So.Much.Big.

 “The days are long, but the years are short.” I’ve heard this phrase throughout the years, and it takes the breath out of me at times with how much truth there is to this. Our sweet little humans turned 9 and 11 recently. I mean, just, no thank you. Stop growing, stop time.

We continue to be in a place that is less than ideal. Henry’s infusions are keeping him stable. We have improvement here and there, with big steps back in between. It is a constant dance day-to-day, sometimes minute to minute. We are currently many steps backwards: about 2.5 years… back into crisis mode. I’m being intentionally vague regarding these extreme symptoms as many of the things we are dealing with are very sensitive. To say we are thankful for his team in Denver and the fight for his infusions and treatments, is a massive understatement – without this medicine, we would be back in the hospital and in an even scarier place. However, to keep a positive headspace and not go down the rabbit hole of disappointment and sadness and grief is a cognizant and intentional choice. Every single day. To watch his symptoms spiral and flare to such a degree as this, is devastating to watch. Especially when we are working so hard for even minor improvements and our brains are on 100% alert each day and moment, is just beyond exhausting. The physical and mental fatigue is extraordinary.

What do you do when energy use is your worst enemy? It’s a question that we deal with every day; this is reality for Henry. We have spent the last few years trying to support his system enough to be able to hopefully build stamina in the hopes that he would be able to use more energy, little by little, without it bringing on such severe symptoms. This is not working. Bottom line is that energy use and consumption is Henry’s biggest trigger and biggest battle. The other (of many) is heat; that being from air temperature or from body temperature rising from movement. We have had to come to grips with the fact that this being one of the worst things for his body, is not going to change, at least for the time being. Therefore, we need to provide a way for him to be outside, get just enough movement to keep his muscles healthy, and then he needs a way to satisfy his desire to stay outside, which we want to wholeheartedly encourage as this is where our happy place is as well. We have been entertaining the idea of a hybrid/motorized bicycle as it is now a love of his to ride a bike, but he can only go a few minutes. And hills are out of the question. (anyone have one laying around?)

After this recent trip to Denver and meeting with his team, this is turning from less of a wish to a need – and being one of many unique changes. Additionally, we came home with meds to double and add, not take away. We are adding more to the day, which feels incredibly impossible, but of course, we will do. And while we came away with a new plan, new-ish reality – we need to do this and order that and add that and find a way to change a lot of our home outside area and are thankful we have a team that never gives up – we also just stare blankly and come to grips with the fact that there’s, again, more money to spend, things to do and add.

Beyond this, other parts of our life do not stop and we try our best to pour our all into each member of the family and other parts of our life as it swirls around us and develops. Our giggly, tender, sweet, thoughtful, joyful Miss Ellie girl, has had years long struggle with her ears. She had tubes put in when she was 2 year old; that means 2 years of missing all her early quiet sounds. She has been in speech therapy for many years and reading has been a very difficult task. This does not come without an incredible amount of effort from her, her speech therapist, and me and Daniel as her teachers. We have suspected further issues for some years, but she wasn’t quite old enough to test for these possibilities. Last summer, we finally reached that point. We were recommended an audiologist, near Denver, went and she was, without question, diagnosed with severe CAPD (Central Auditory Processing Disorder). “Central auditory processing is what the brain does with what the ears hear. Our auditory system is complex—it first must detect the sound and then process the information before we can understand it.” Central Auditory Processing Disorder – Johns Hopkins All Children’s Hospital (hopkinsallchildrens.org) “To a person with Central Auditory Processing Disorder (CAPD) the sounds of speech are muddled together because the speech processing centers of the brain are unable to distinguish one speech sound from another. Even if their hearing is normal, people with Central Auditory Processing Disorder (CAPD) have difficulty understanding speech. The problem is especially pronounced in situations with background noise. Their brains have difficulty discerning and processing the sounds. In other words, the brain cannot hear, even as the ears are fully functional.” Central Auditory Processing Disorder (CAPD) – facts about Central Auditory Processing Disorder (CAPD) | hear-it.org

It’s been daunting, but tremendously enlightening and gave us much needed tools that enable us to help her much better. She has an ear filter (not a hearing aid) that has been life-changing, she wears noise cancelling ear muffs off and on throughout the day to give her ears a break, we changed her school room so her desk and mine is positioned optimally, changed up her reading program, understand when she needs breaks and so on. Her audiologist is simply wonderful and told me, “Ellie has been working so hard. She is exhausted by 10am. And she still manages to do school as best she can and do her day; she is so happy, and is so tough and amazing!”

With that said, we now know the signs and symptoms and what CAPD means and how it affects life so immensely. And then our heads swiveled to Henry. Long story short, he fit the parameters, he was tested and, yes, this is a piece of his pie as well. He also has CAPD, was issued a filter and it has helped him as well. His diagnosis is not as severe as Ellie, but definitely, especially on his harder days/moments, it is affecting his life. And on yet a further note, she told us that half of her patients are adults… Daniel just looked at me. He got tested. He is now diagnosed with CAPD and has a filter on the way.

As hard as it is to talk about any family issues and hardships, I think it’s always hardest to talk about yourself. I want to be fine and healthy and able to handle all that life has to throw at me. But that is not reality. We all have things. Albeit, I do feel like we have a lot of freaking things. All that to say, I have been dealing with many health issues – and I’m mad about it. I don’t want it. If I ignore it, it will all just resolve itself and go away. That’s, unfortunately, not how that works – my health has been declining over the past several years and I don’t have time for that. But I’ve been forced to make time. I’m still in the thick of it, but have finally found 2 out of state doctors that are seeing, listening and helping. I’m in the midst of more testing and trialing medications, but so far I’m dealing with Celiac (which I have known for many years), MCAS, Lyme, Lupus and likely more autoimmune, auto-inflammatory/vascular disorders. To top it off, I’m allergic to dairy and eggs. I cannot tolerate onions and garlic. And I’m on an anti-inflammatory and no nightshades diet. It’s actually probably easier to list off things that I CAN eat. I miss food. And sugar. But I’ll get over it. My plethora of symptoms are constant and debilitating, but they can’t be as life goes on around me and our family’s needs are so great.

Talking about our situation is difficult. Reaching out, being vulnerable and honest about how hard and devastating things can be throughout the day, has become beyond my scope of capacity. Which seems the easiest in the moment, and then a year or more goes by and we know it’s not. I think most people, when things are in crisis mode or extraordinarily tough, even if unintentionally, hunker down and power through. But when it’s ongoing and years long, this becomes a never-ending cycle and it’s exhausting. And I think it feels a bit pointless, in our exhausted, not-able-to-think straight brains, when no one can come into your home anyway due to our severe immune-compromised, lockdown reality.

And beyond the feelings and the exhaustion, is the black and white part of life. To buy things, you need money. There’s no way to sugar-coat that. It’s not something we ever feel comfortable talking about, nor do most people. Unless maybe you have a lot of it. But even then, it’s an uncomfortable topic. We dance around the details and the numbers. We ask questions that aren’t really questions. “Are you going to be able to make that work?” Which is understandable. We will always figure out a way to make it work. To be perfectly blunt and honest, it feels so impossible at times, it takes our breath away. But we do make it work, although to do so puts us so far past our comfort zone. We have been deep in medical debt, had to refinance our house to break even, and are now heading back down that road as we still make the same amount of money and the medical expenses and unique needs keep, incredibly, rising. We are smart and responsible with our money, but no matter, this is just beyond that. To give a very vulnerable, exposed idea of one medical trip to Denver, which we have to do several times per year – gas expenses, doctor visits, lab tests, new medicines; no costs on restaurants, excursion or extras – this last trip came to $6,000. And it most definitely wasn’t Disneyland. This doesn’t even include the existing medicines and supplies and infusions and labs and other doctor appointments by phone and whatnot of our day to day, to which we also don’t break even. So there’s that dreadful topic and detail that most often just leaves me feeling incredibly icky.

At the end of the day, when I’m shutting down the house, I’ve typically been on my feet for 14 hours, often speechless at the events that unravel constantly throughout the day. To try and convey the amount of essential tasks we have to attain daily, is beyond me. It’s difficult to be in this place of extremity for so many years, and we are still here. I tire of the sound of my own voice and feel such fear that others do as well, that we often resort to just saying, “We’re hanging in there, how are you?”  And we are. Between Daniel’s 10-14 hour swing shifts, infusions, meds, speech, auditory awareness, teaching, we are very aware and very intentional about, at the end of the day, being thankful for our amazing children and giving them as carefree, joyful, and playful life as possible. We pray we shield them as best we can. But include them in the reality of life when we deem necessary. We keep going and will, but we have been handed a full plate and, at times, it seems an impossible task.

“Joy is not the same as happiness”. I heard this phrase a few months ago and it really resonated with me and has stuck itself in my brain. This is the best way I can describe how I keep moving forward. I have deep-rooted, true joy in my faith, my family, my friends – my life. Does this mean I feel happy all the time? No. But my base of joy is always there and keeping me motivated. Keeping me grounded. Keeping me smiling in the moments. Keeping me silly. Keeping me dancing. And when I’m not- when I’m sad, feeling lost, feeling devastated, feeling defeated, feeling bone deep-can’t-keep-pushing-exhausted- it keeps me being me.

Here, there, and everywhere

Ohhhh 2020. Where to begin, where does anyone begin right now? With an UM. Or a blank stare. Or a stutter. Or a swear word. A meme with an explosion or disheveled hair in the middle of a house where a bomb went off, OR….. Take your pick, I know we have all done all of them, I know I have… well, the disheveled hair is everyday. But whatever.

Up until March, we were traveling to and from Denver, for docs and infusions, an obscene amount –  home 10 days, gone 10 days. I’ll never forget our drive home from Denver as COVID was hitting the U.S. I remember being in the middle of Montana, looking at Daniel and saying, “I think this is happening; we need to order some food and supplies.” We nervously chuckled, feeling ridiculous, as we found stock of food items and such on Amazon and placed our orders, feeling a little bit weird, but thinking, “Well, if we are over-prepared, so be it, we’ll eat it anyway.” Within a few days of us being home, quarantine started and, well, we have all been a part of that nightmare.

Our next 10 days were chaos of trying to get infusions approved for home through docs and insurance and the home health company. We were on pins and needles, as it was home infusions or no infusions at all. All the while, trying to make sense, with the rest of the world, of what was happening. Miraculously, it all came through. Silver lining for us, was that we got a bit of a breather. Just to be home. And home. Oh wait, and home. 

In August, Mayo Clinic rescheduled Henry’s much-needed clinic week to hopefully get further testing done and specialists seen. We also needed to be seen by his docs, current and new, in Denver. It was risky to go. And it was risky to stay. So we loaded the motorhome with enough food and water and supplies to last us the entire trip, so that our only stops would be for gas and ice, and, of that, we were successful. What a surreal time to be on the road. A crazy amount of people were out in some areas, and then some were eerily quiet. It definitely has been the year of RVing – campgrounds were more crowded than we’ve ever seen. And, truly, we have decided we would rather travel alone in the winter months (minus slippery roads) with just us and the truckers, camping in snowy closed campgrounds (unbeknownst to us), liquor store parking lots, truck stops and Walmart parking lots and empty campgrounds. HA. But, no, really.

Our route was home to Denver to Rochester, MN to Denver to home. We calculated that we drove almost 5,000 miles in 3 weeks. UM. The weather during these weeks also matched this surreal time – above us on the freeway were flashing “Ozone Alert – combine car trips and fuel up after 5pm, stay indoors” signs in Denver, 100 degrees, thunder that shook our motorhome, lightning, downpours, severe wind and a few random beautiful days where we got to go a few walks. Our kids were rock stars. They love being on the road, in the motorhome, no matter the outside insanity. Never once complained of a driving day; it was the opposite. No matter what the day looked like, they were happy we were together. Ellie said, “This is the best motorhome trip EVER.” Winning.

It’s daunting to try to summarize and explain the outcome of these appointments. We had multiple appointments per day, and the days without appointments, we were driving. There are so many moving pieces to Henry and his care, that I feel like a ginormous roadblock is in front of my brain when I try to speak about it. What I will say is that our ultimate, always ultimate hope and prayer, is that we will find a specialist, get a test done, get results and they will say, “We found it. We found the ONE thing causing all this havoc. We have our smoking gun and here is the fix.” We will never stop hoping and praying for that as we know miracles can happen. However, as of now, Mayo testing has resulted and final consultations have been had – there is no smoking gun. Did he confuse Mayo Clinic? Yes. Per usual, his test results don’t quite ever make sense – “This is abnormal, usually when this number is low, this other number over here is high.” And so on. They confirmed some issues we knew about, they ran tests that only their lab can run, they ruled out scary things. And they had some new findings. One of which was an issue that, when low, can cause neurological issues of varying degree and a plethora of symptoms. We just started a trial of a medication for this, which can be complicated as it involves getting the right type and dose to cross the blood brain barrier – but, since his symptoms so severely overlap – we just don’t know if this is the cause. We, again, hang on that fine balance of having hope, but having practical, realistic expectations so we are not crushed if it doesn’t work. It’s a very tricky place to be.

When Henry’s rapid decline occurred summer of 2019, it likely kicked off a number of issues that we have uncovered and will continue to uncover. We were fully aware that we could walk away from Mayo Clinic with no new answers, which was such a risk to us. But also a risk to not find out. Our prayer was that if we didn’t get a foul swoop answer (which was a long shot, to say the least), to walk away with at least a few more puzzle pieces to click into place. We did not walk away with nothing. We have a few more pieces to add to our puzzle, for which we are thankful, and yet again, a few more pieces that bring more questions, that aren’t quite ready to click in yet. Now, can I say that I haven’t felt horribly disappointed and discouraged and tearfully angry? No. Was it necessary and beneficial to go? Absolutely.

So. We are back home. Ellie is doing what she does best – finding frogs. No metaphor there, just literally, searching the property, nooks and crannies, for tree frogs, holding them, poor things, chasing them, squealing with joy EVERY time she finds one (even though she finds several a day), naming them the “best names ever” (Greenie, Jumpy, Cutie, Spotty), making them homes out of anything and everything, then letting them go – and we have to say goodbye out loud to each one. She is a combination of unicorn, mermaid, princess and frogs and mud. OH this girl, there just aren’t enough words. She is so loved. Home infusions have been re-approved. We have started homeschool for the year. And in doing so, my mind was brought back to last September when we started homeschool. Henry couldn’t even start. He was in such a scary place, and still is in many ways. However. He did all his first day lessons. In the first day – what a drastic change to last year. His team in Denver is amazing – he is where he is today because of them. As a team, we discussed his percentage of improvement since we started the IVIG program. Overall, he is at about 50% improvement, considering all areas. This is no small victory; this is huge. This is while still on 24 hr IV and long IVIG infusions every other week (which I am now mostly administering myself) – and this will continue for the unforeseen future. I have days where I want the rest of him back. RIGHT NOW. And it’s sad and devastating if I think about how far we have to go and what I miss about my son that is sitting right in front of me. I miss him so much that it physically hurts. Then he’ll pop into a moment of clarity and I’ll hear his sweet little voice and he’ll give me just a long enough hug that I can take a deep breath and keep going. 

Storm

I keep waiting for the moment when we know everything and every test has resulted and I have a nice, neat package of information and updates. Not. Going. To. Happen. So, here we are. We are honestly sitting in an overwhelming, stinky pile of poo. I keep waiting for the pile to get less stinky, less icky, less daunting, I keep walking around it, not wanting to deal with it, because it’s gross and no one wants to talk about stinky poo. Well, tough bananas, I guess, because it’s just getting stinkier.

This will be as concise as I can make it, and I don’t have a lot of information regarding the details of the plethora of changes and spirals and results and such.

In July, Henry had a very rapid, very scary onset of neurological decline. Within 8 days, his brain, as we have known it, was not the same. Memory loss, age regression, forgetting how to walk, could not hold a conversation…. Then he came to a catatonic state. He laid in his hospital bed for 6 hours at a time just staring at the wall. Could not talk, could not look around. Then his other health symptoms took a spiral, and for 6 days, he was either sleeping, staring or vomiting. The doctor teams got larger and larger every day. They finally, at our insistence, worked with our docs in Denver who pushed for them to try one last thing, an infusion of other people’s antibodies into his. He did a 5 day course of this infusion and it popped him into talking a bit. But he was still having a severe amount of neurological issues. They sent us home and told us to ignore it. Um. NOPE.

We have been to Henry’s docs in Denver 5 times since August. In that time, his care team has grown. They are angels and have been working around the clock to tear apart his health history and address the many holes in his testing history. Henry has had so many abnormal results and scans over the past 6 years that I have been fighting tooth and nail to get looked at further and re-scanned and re-tested. His team is doing just that….. their words: “Um, what is this test? Why has it never been followed up on?”… over and over and over and over. YES. PLEASE DO IT. So they have started the arduous task of following up on ALL the abnormal tests and scans. Below is what we have. It’s not awesome, we are processing slowly and have a very long road ahead of us.

We have learned that Henry’s body does not have enough antibodies, T-Cells and Natural Killer cells to fight infections and viruses properly. He is officially highly-immune compromised. We are in the beginning of this next cold/flu season. Not good. At this point, along with everything else his body has going on, he is very fragile. We have been directed that he should not be in public places, (except for going outside): no church, no airplanes, no stores, etc. Our system of life has to change dramatically.

Henry has also tested positive for Lyme disease, along with 2 co-infections of Lyme. At this point, this is highly affecting him, but we cannot treat these infections right now as he is too unstable.

Glucose (sugar) has always been an issue for Henry. He has always tested low or on the lowest of the normal range, even when getting his infusions of dextrose (sugar) every night or even continuously. It has been something we questioned in many doc appointments. We now know, with recent test results and looking at specific genes in his raw GNOME (DNA) data, that he has some sort of glucose disorder. We know that he is not getting enough sugar to his brain. Your brain NEEDS sugar to thrive and provide basic function. It is so important. How do we get sugar to his brain? We don’t know yet. Can we get him back all the way? Did we catch it in time? We don’t know yet.

Henry had an abnormal liver scan about 5 years ago that we questioned continuously. It finally got rescanned last week. It did not come back with good news. Since he has had low glucose issues, we have learned that this has damaged his liver. Your liver pulls from your glucose stores. Henry has not had enough glucose stores, so his liver has been pulling from his fat stores. Your liver is not meant for that. He now has fatty liver disease (he has the liver of an alcoholic) and we have to stop the damage right now. The liver specialist needs to do a liver biopsy (mid-December) to determine proper treatment.

We have fought docs and those skeptical of his port and the need for his D10 (sugar) infusions for most of his life. We knew it was the only thing that worked and only kind of knew why. When your child is struggling before your eyes and you know that something makes him feel better, you just freaking know. Now we know and have been told that our push for D10 has most likely saved his liver and his brain until this point, but it just hasn’t been enough of it and his body is completely exasperated and exhausted.

We have also had Henry’s mitochondria (energy powerhouse cells) function re-tested. To put it simply, they are not functioning properly. He has some that aren’t hardly working at all, and he has double the amount that a normal person has (when this is the case, this means that his body is trying to make up for the lack of function, but in the wrong way). Mitochondria cells are how we make energy and they also tie into the immune system, the liver function, etc. 

There have also been other recent test results that prove overall that he is in the middle of an autoimmune encephalitis (his body’s immune system is mistakenly attacking healthy brain cells, leading to inflammation of the brain – which brings on various, often severe, neurologic symptoms).

Overall, his team is systematically trying to figure out which of all this comes first, what is leading what, is this a big domino situation, are all his health crises independent of one another (most likely not). We are talking clinical trial options, treatment options, waiting on other tests, etc.

What do we know? We know that we have access to 24 hour D10; his body needs more glucose RIGHT NOW. We will be running that continuously for the indeterminate future. Insurance has also approved a higher dose of IVIG (other people’s antibodies; the hope is to help his immune system – but we won’t know for about 9 months if his body will react well, if at all to it) infusions. At this point, he will be doing infusions of this every 3 weeks. The doc calls this our “tune up period”, where we are trying to find the perfect dose and then, subsequently, the perfect spacing between doses. Once this is determined, we hope to be able to get his infusions closer to home, but that is another kind of insurance approval and we all know how long that can take. For now, we will be driving to Denver as often as necessary as flying is no longer a safe option.

What else do we know? Stick with your gut, parents know their kids best. They JUST DO. Keep fighting. Docs are just people and they don’t know everything. Some admit this, some do not. If something doesn’t feel right to go home and ignore, don’t. Be pushy. Be annoying. Piss them off. Call them 15 times a day. You are their only advocate.

We are in the middle of a stinky shit-storm, I’ll just say it. These new diagnoses and findings are ON TOP of the other 18 known issues, so these new issues are even trickier to work on. We have some more answers and more tests are still pending. Our baby’s body is a disaster and we hate it so much. We are thankful that we have an amazing team in Denver who genuinely cares and wants to HELP. We are trying to process what we need to do and how to best do it. We feel like we’ve moved from our community, but yet not landed in a new one, right now we are just kind of “gone”. It’s a very strange, weird, disconnected place to be. We are sad and we hope and pray that we can get our sweet boy back. Our emotions flip flop all day. We try to figure out how to get a smile on Henry’s face when he feels well enough, although Ellie and Louie (our dog) can still pull it off, sweet things. DId we plan to have a nomadic life and upbringing for our kids? No. But we are all together, so for as long as we need to, we go. Ellie hugs us a million times a day, so excited for our adventures. Homeschool on the road, new scenery, and all the while in disbelief at the constant curveballs. YET, God is still showing up in many, many ways through random kind people and closing gaps on crazy situations, somehow always providing for our basic (and not-so-normal) needs. We don’t know where we would be without God, our amazing families, church family, and wonderful friends that have stuck by our side and, along the way, we have been continuing to learn to humbly accept help when offered and to ask when we need. We all want to be so independent, prove we can do life on our own, put on that brave face and power through. Well, our power has been used up. Thank you to those that we can lean on, even when we can’t communicate, reciprocate, have half written texts back, and are mostly gone and away. So we keep on keeping on, and that may include stopping at a Llama farm along the way. Because. Well. Llamas. Here come the Ottens, in all our disastrous glory. 

Here’s what I got

You know, I don’t even know. I don’t even know how to describe these last 6 months. People ask how it’s going and my mouth opens and closes a few times like a fish needing air, and no sound comes out. Which I guess is appropriate given that I feel like we are gasping. All.the.time. I’ve literally had no words to describe this hellish time, and I’m still reaching for the right ones.

It has been a hot, smoky, emotionally draining time. I’ve had to access and have Henry on IV fluids numerous times. We have travelled a lot this summer in our car, for various events and family gatherings. We were mostly, literally, stuck inside due to the heat and the smoke. We had 7 days notice that we got into a new specialist in Denver, that had been booked out 5 years. So we had to go, obviously. It was a 3 day whirlwind trip, with temperatures nearing 100.

Henry has declined in new ways. I didn’t even think this was possible. Well, of course I knew it was possible, I just didn’t think we could possibly handle any more. Wrong. These past months have brought a myriad of issues that I would never wish upon any parent. Ever.

Brain fog. It’s a thing. I’ve heard the phrase. It’s one of those, “but is it really a thing?” Holy mother. It’s a thing. Brain fog is one of the biggest symptoms of MCAS that Henry has been struggling with… Webster dictionary defines brain fog as “a usually temporary state of diminished mental capacity marked by inability to concentrate or to think or reason clearly”. Well, let me tell you. In all the health stuff over the years, we have always had our Henry and his super smart brain and his funny and his giggles and his chatting (when feeling good). Or we at least had that in between the health spiral cycles. This summer, that part of him that we always had, went away. We lost him in that way. Ellie has lost her playmate. He literally can’t hold a conversation, look at us, remember very simple tasks and directions, basically function. He paces to distract himself from feeling crappy and then can’t remember that he shouldn’t be doing that because it makes him feel crappier as it uses energy uselessly. It has been devastating to watch and makes us heartsick. We have felt helpless. He has been a flat, ghost of himself and the only thing we have been able to do is snuggle him – he just heavily melts into us and takes a deep breath, like it’s a relief.  Oh my heart. I just love him. And I MISS him. Even though he is right in front of my face.

As we are constantly fine-tuning Henry’s care and routine and figuring out his body’s boundaries and limits, it gets harder and harder to explain the depths and severity of his situation. I think that the toughest thing for us to get across is the fullness, constantness, the totally-completely-on-alertness- of my brain, the tightrope we walk, the balance we absolutely have to have every minute of every day, the lightness we still try to have in our house…. of our day. It’s just a freaking lot. Every day. All the time. And unless you live here, in my house, I cannot express to you how MUCH it really is. This is stuff no one sees. That every decision is two, three, or four-fold. We know that most people do not see Henry when symptoms are present. Or when he is in a spiral. Or having a Mast Cell attack. This is because of an excessive amount of picking and choosing, an extreme amount of planning, deciding which consequence is the best of the worst, which after effect will last days vs. weeks. And then sometimes, it still lasts weeks.

And this is the hard stuff with Invisible Disabilities (sometimes called Hidden Disabilities), which is really what we are dealing with at this point. Yes, when he struggles with vomiting, hives, flushing, etc, or if you are around us a lot, there are most definitely visible symptoms present all the time. The little things that you will start to pick up on… the fog, the black circles, the flat demeanor, the pacing, the eye itching, the exhausted stare, the heavy lean against you when you give him a hug… Breaks my heart.

There is so much pressure to balance his life, of course as with ANY kid, but the pressure of what to choose because he can literally do 10 mins a day of anything new, maaaaybe an hour out of the house, is ridiculous. I hate that we have to be the ones putting boundaries on him. But the huge realization I had over these past months, is that we are NOT the ones putting boundaries on him. His health and body are putting boundaries on him. Not me. Not Daniel. God gave us Henry to protect, keep as healthy as possible… that’s our job.

We have a new MCAS specialist out of Denver, CO, that is amazing. She is delving deep into what of his 12 disorders is triggering what. As always, it’s going to take time. Awesome, I love things taking time. And the long and short of it is, that this may be what it is. Do I have hope that it will get better? Absolutely. But for my brain, I have to be realistic and call it what it might be. It has been a huge grieving process. And still is. Every day, sometimes every minute, is hard. Some minutes I feel like a can’t breathe. I feel like it’s insane to say that I miss what was last spring as it was a different kind of full and huge and heavy. But there are times that I do. We are chipping away and have some improvements. But this new stuff. It’s just shitty. No different way to say it. Right now everything continues to just be so damn big. I am redirecting and providing different distractions about every 10 mins (which Ellie thinks is ridiculously fun, and Henry hardly even notices) with a covert reminders every 30 seconds of what we are doing and to stay on task, making sure to word it many different ways. And then we pace. And then stare off. Remind again. Pace, stare, remind again. All day. My brain.

On top of those things, I’ve learned that I most likely have a mild form of MCAS and Ketone disorder. And I’m going through early onset menopause. Awkward. And just super. Um. I can’t even. I’m just going to shove that to the side and pretend I don’t know, because, just, no thank you. I saw this quote the other day, “A perfect metaphor for my life would be – someone trying to stand up in a hammock. Yep, yepper doodles. So I’ll see everyone soon, in a tank top in freezing temperatures, my eye twitching.

Reality

Being in a humble and vulnerable place is so hard. I tend to just power through and do it all myself. I got this. And most times I do. But then there comes a point, when letting go of “I got this” and letting someone else take some of the load off, becomes necessary. I don’t like that. I don’t think any of us do. And we have been in this struggle for such a long period of time at this point. We want to finally be in a place where we can say that things are getting easier and life is getting a little less crazy, we totally got this again. God says, “not yet”. “Fine. What do you want from us?” We know we are in a place of learning. In a place of accepting God’s will, whatever reason that may be. It allows us some peace, knowing deep in our hearts that these trials mean something, even if we don’t know what yet. We know they mean something, because we still see Him working. We see doors opening, things falling into place, and though they may be small things, it keeps us going and keeps our hopes up.

However. THIS IS HARD. I tend to retreat within myself and hide a bit when we are in a unsettled place. Sometimes it’s not even intentional, I’m just powering through, balancing all the responsibilities with being totally present with my kids. It’s easier. But is it really easier? After awhile, there is a loneliness that settles in when those around you think things might be getting better, when in reality, we are fully maxed out. When I talk honestly about our day to day and the authentic struggles, (including but not limited to Henry), I feel like I sound like a broken record, a whiner, “woe is me”…. but then a friend said something to me last week that struck a chord. “But this is your reality”. So simple. But it’s the truth. There are more struggles in our lives than Henry’s health, but I get so tired of hearing my own voice or even thinking about all the hard, I just shove it down. But the reality is, that the past 7 years have been a great big marathon with no breathers. And don’t get me wrong, I am a doer. I love projects and getting things done and not stopping until they are done…. however, I hate running. Like a lot. I also hate drinking water, bananas and coconut. But I digress.

All this to say, our struggles are long, real and heavy. And that sucks. We are givers. It’s what gives us joy. It makes us feel like we have purpose. That was the first 7 years of our marriage. Then fertility issues, health issues for the first born, high risk pregnancies, drained savings and maxed out credit cards due to drained savings from paying for all our constantly rising issues. Furthermore, Ellie has had major breathing issues since she was 18 months old, has been ambulanced to the ER while turning blue and has landed in the ER several times a year. Her specialist finally pinpointed what is going on and what was blocking her airway – she has been on medication since last summer and is doing great. Not one breathing issue since diagnosed. Praise the Lord. She also had severe issues with fluid in her ears – she landed in surgery to put tubes in at the SAME TIME that Henry was being ambulanced to Mary Bridge in Tacoma. We literally had 5 minutes to decide on logistics, daddy went with Henry and mommy with Ellie… ready set go.

On top of those things, I have had various health issues the past few years. I had a major surgery a couple years ago, invasive testing done, another procedure at the start of this year, along with that a lot of pain. The last few months, my body finally said, NOPE, I’M DONE. I have had to address some things that require time and rest. Something of which I have SO much.

…… and then to now. Where we are on the receiving end of giving. We don’t like this place much. A dear friend of ours started a You Caring fundraiser for us, which feels so unsettling. Though we are beyond thankful for it. We are blown away by the support. Thank you. And humbled. And vulnerable. It’s feels so unnatural. And icky. It feels like failure, like we did something wrong. We didn’t save enough, we didn’t pray enough, we didn’t give enough. But I’m realizing it’s the opposite. A friend asked me how it felt to give and reminded me that there have to be receivers for there to be givers. This time of our life is to be receivers. Ew. I don’t like it. But I get it. And that brings me some peace. Makes me take a deep breath. I know in my heart, it will change again and we will be able to give back more than the small ways we can now.

I haven’t even had time to think about this place that are presently. Once I do, it is the image of glass shattering all over the place, a rollercoaster, and the image of a house that refused to sell in the middle of high-rise buildings (the movie Up is one of our favorites). I can’t pick up all the pieces, while going incredibly fast up and down and spinning all around, in our own little world of it’s own in the middle of chaos. Anyway, welcome to my brain. We are now in the aftermath of Boston and the whirlwind of trials and changes and more changes, and still in the middle of trials and changes. Yes, Boston was life-changing. Henry is doing much better than before… he has had longer times between IV rounds and his symptoms are significantly improved. I think what’s been earth shattering, is the fact that we didn’t get to take any of his already high amount of medications away. We doubled them. DOUBLED. His diagnoses have increased, we didn’t take the rest away and replace it with one main issue…  No, they INCREASED to 8. Our son has 8 health diagnoses. Are we thankful that we are not just shooting in the dark? Absolutely, don’t get me wrong. But really? 8? I mean, come on. 8 is so complicated. And if I am honest, it brings a bit of shooting in the dark as symptoms overlap and medications get insane and treatments that are good for one, are bad for the other. We are on a CONSTANT tightrope. Give too much of something and oh shiza, that now has set off the other thing and oh wait, not enough of that and oh crap, we set off something else. Energy use is terrible for Mast Cell, but better for POTS. And on top of all that, all these medications have side effects. But we have concluded, along with his team of doctors, that the side effects are better than the symptoms. That said, below is a list of times that we are giving a medication or treatment of some kind to give an idea of our day. This does not include times when he is accessed and getting IV treatment at home. Or having the literally burn the bad raw skin off on the inside of his GTube hole. Or his machine beeping at any time, multiple times per night. Or watching constantly for early symptoms signs, which happen all throughout the day and night.

• 6:30 am
• 7:00 am
• 7-9 am
• 10:30 am
• 11:30 am
• 1:00 pm
• 3:00 pm
• 4:30 pm
• 5:30 pm
• 6:00 pm
• 8:00 pm
• 9:00 pm
• 9 pm – 5 am

Totally normal, right? We try our hardest to make his life fun and as “normal” as possible. Henry is in cub scouts and Ellie is in preschool and doing gymnastics. They are both so proud of these things, which is exciting.  We are constantly questioning if he is behind socially, which he is and that is just the way it is right now. At the end of the day, I’ve realized that we can’t ask that question like every other parent. Or work on it like every other parent. My mom said to me the other day, “With all that he has going on in his little life, that is the least of your worries. It will come.” I think that is what’s hardest. No one around us has these issues, or even anyone that we have heard of… we can’t watch him with a friend and compare the way he interacts like other kids. He is here. He is alive. His brain is almost smarter than mine. He has more health responsibilities in his day than most adults. He has medication side effects, is tired and feels icky a lot. So when he says, “IT’S NOT FAIR!! I just don’t ever like it when I don’t get my way! I will never, ever, never, ever, never do that! NO! NO! NO!” Says Henry as he stomps AS LOUD as possible all the way to his room. Yep. I get it buddy.  Don’t we all want to say the same thing, sometimes all day? Even us adults. Ok, especially us adults. Except we add bad words.

And that’s just life, God didn’t tell us that life is fair. But try to tell this to a kid who has had serious health issues his whole life and has to do an extreme amount of things he doesn’t want to do. We have to explain that we each have our own walk and blah blah blah and at the end of the day we don’t know why we have an extra big load of crap. We just have to do our best to hang in and see what God has in store for us. Well….. Henry doesn’t care right now, he is just mad at that moment. We have to constantly have such BIG conversations… about self control and who controls his body and how he reacts and how to channel frustration and anger appropriately…. at 6 years old. Adults can’t even do that all the time when they feel like crap. Or just any day. Because at the end of the day, we are all born jerks. We have to learn to be kind and nice and have grace and understanding… and most of the time, that goes out the window in times of stress or crisis. All that to say, Daniel and I have to have a LOT of self control ALL THE TIME in our situation. It’s exhausting. However, we are on our way to being perfect with all our practice. Right….

Doubt as a parent is the worst, whatever your situation may be. And it’s always there, gigantic or tiny. And then these little moments happen, that get us through and keep us going, and give us some much needed confidence for, like, 5 seconds. There have been 3 things said to me over the past week, that I desperately (unknowingly desperately) needed to hear. 1. We were watching a movie about happiness and that you have to find happiness within yourself. Sometimes I wonder how much of the concept gets through to them… however, Henry turns to me suddenly and says, “Mommy, I’m always happy. Louie though (our dog), is just always pitiful because he doesn’t get our food.” He makes me laugh a lot, and with this one, brought some tears. My worries about how much he may feel frustrated about or angry about came to some peace. That’s how he truly feels about his life. We are doing something right. For now. 2. I was making a snack for Ellie and chatting with her and getting her water, because as a mom, that’s pretty much all we do, and she suddenly looks to me and says, “Mommy you give me so much attention. ALL the time.” My heart exploded and I again, received some peace in knowing that all our awareness of giving her just as much attention and making sure she doesn’t feel like the “sister of a sick kid” (which he totally doesn’t think about himself, which is so awesome), is working. 3. I met with Ellie’s preschool teachers the other day. She is struggling with her speech due to her ear issues and is now seeing an amazing speech therapist who is working wonders. They said to me, “Ellie is such a joyful girl. Not just happy, but joyful. That isn’t something we can teach her. We care more about that than her ABC’s. We can just see how secure and how loved she is.” Oh.My.Heart. This little babe is a gift to us. This little sweetie who wants to have her brother lay in her lap while I put a needle put into his port. Or, worse, has a nitrate treatment and is screaming and sobbing from the pain. She is patting his head and rubbing his cheek, saying “it’s ok Henry.” He is happy and she is joyful. And boy are they, despite the heavy realities of our life. Thank you Lord for those reassurances this week.

Our life is full of unknowns. Full of questions and doubts. Day by day or hour by hour. Sometime minute by minute. My brain is always on, moving and thinking, planning and checking. What I DO know is that Henry is the bravest, strongest boy I know. And Ellie the most empathetic, sweetest, strongest girl I know. So in my moments when I doubt every single parenting thing that I am doing and questioning every discipline, every reaction, comparing to other kids (that I know we shouldn’t do, but we all do – which does nothing except make you feel like crap), I am trying to remember that our reality is heavy. It’s so damn heavy. And hard. And unending. I worry that my kids feel this heaviness. Feel the stress. We do our best to shield them. I take most doctor calls away from Henry. I don’t talk about it in front of Ellie. However, there is also real life and this is also the reality of their life. I know they will be strong. I know this has brought us all closer. And I know they are happy. I’ll take it.

 

 

 

 

 

 

 

 

 

Breathe

We are all holding our breath. The biggest trip of our lives is over and under our belt. Boston is done, doctors have been seen. Some tests have been completed. Some tests are still out and won’t be back for 4 more months. My brain is still in a whirlwind about what happened and still is happening. Which isn’t that different than normal. Our whole life is a big emotional, comical, factual, my-eye-starting-to-twitch whirlwind. We just can’t keep up. Our to do list has so many small things on it that take up such little time. But yet they are still on the list. Driving me crazy. But they still have to wait as we have and will continue to have bigger things to deal with. Some exciting, but mostly daunting. Such is life.

Henry is being treated for something called Mast Cell Activation Syndrome. Every doctor we met with in Boston came to this conclusion. Of course it’s something weird and I literally have to google most of the words in every sentence I read about it. Everyone has mast cells. Mast cells are a type of white blood cell and are derived from a specific stem cell that is part of the immune system. Mast cells contain histamine and play an important role in helping defend your body tissue from disease. With Mast Cell Activation Syndrome (MCAS), Henry’s body has an immunological condition where mast cells inappropriately and excessively release chemical mediators (mainly histamine). This results in a myriad of symptoms, many of which are hard to assign to MCAS as they are so broad and can be symptoms of so many disorders. This is about how much I understand of this syndrome. And I actually feel pretty proud of that because of all the googling I had to do to just get that much and translate super smart doctor speak. Feel free to google Mast Cell Activation Syndrome and read up on it. We are having a hard time finding a MCAS specialist in our area, so for now we have our main team and Boston as a contact for now. And google.

You know how when you google a disease once in a while, or every day, and at the top of the search results usually shows a list of symptoms? And if someone has the disease, usually you only have a few, maybe half, of those listed? Below is the list of possible symptoms of MCAS:

swelling/edema
flushing
itching
abdominal pain
nausea/vomiting
diarrhea
wheezing
shortness of breath
heart palpitations
anxiety, difficulty concentrating
headaches
brain fog
low blood pressure
fatigue

Henry has almost ALL of these symptoms. Every day. We have felt so crazy. And frustrated. And not able to describe our day to people. Well here is some of it. All in one list..

Almost 2 months into this trial and he is still improved. We are still holding our breath. We are scared. We are scared to discuss it with anyone, tell anyone that we are encouraged. That we are hopeful. What if treatment stops working and we have to yet again, say “never mind, we take it back and starting over. Again.” Hence the delay in writing anything down. It makes it permanent and out there. Being open and vulnerable is so hard. But is is so necessary as we don’t know how we would be doing any of this without support and prayers.

We have had a set-back in the last 2 weeks. One of the medications he was taking was have a terrible side effect of rage – in my face, within an inch, screaming at me about something minor. Up to 5 times per day. By the end of an episode, my sweet, empathetic, caring boy would be sobbing. Not able to control himself. And know it. It has been so shocking and terrible. We were told to hold tight those first few weeks and see if the side efffects would wear off. They had not. We took him off the medication and he has not raged one time since then. However, now we are seeing symptoms break back through. GAH. Seriously? We have to choose between rage and symptoms. I don’t say very often that my life, his life, our life is not fair. Because life just isn’t fair. But really? This just isn’t fair. Come ON. The other night, he didn’t feel good and was really tired. He is just exhausted, in so many ways, to his core. Daniel talked with him about it before bedtime. Daniel said to Henry that he was sorry he was so tired and then asked Henry how he felt about being so angry the week and months before…… Henry said, “Ya daddy, this week I feel tired and last week I felt so mad and didn’t know why. I would rather feel tired.” Then again last night, he felt icky and said “but I would still choose this over being so mad.” Punch in the gut and BREAK OUR HEARTS. He has to choose at 6 years old and knows it. He is my little superhero.

With all that, we still have improvement. Seeing him play and run around without having to make him sit down every 5 minutes to rest is beyond-words-amazing. He has not vomited since the plane ride home. We are blown away. At the same time, I am still emotionally disconnected from what I am seeing. I can factually talk about it. I can recognize it. I KNOW what I’m seeing is night and day, but it will still be awhile before I can trust it. The fact that our lives (for now) have changed drastically and this could be a mainstay is still totally foreign to me.

Now, this does not mean that the other issues and diagnoses that he has necessarily go away. On top of that he still has Periodic Limb Movement Disorder, Restless leg, Severe Reflux and mostly likely another disorder that has to do with an extremely good response to a high carb diet. Henry is still taking all previous medications and G-Tube feeds along with this new treatment. The new treatment adds a bit (more) coordination and scheduling and timing of medications to our day. The goal at this point is to hold steady and slowly try to wean out other meds/feed to see if his body can handle it. It will be a very slow, tedious process. The next 6-8 months will be long. But at least in the meantime, he can play. He can learn what he likes to to do. How he likes to play without interruption. Or at least without as much interruption – he has a 4 year old sister who is giving him (and us) a run for our money. We are going to start him in cub-scouts this year. This is the first time ever that we have even been able to discuss a group commitment. Huge things are happening that seem like such small things to most people, but we try to see our blessings and recognize them (as it can admittedly be hard to do so sometimes).

Which brings me back to Boston. To say it was a blessing, is the utmost understatement. I’m not saying that I liked the city of Boston. I know those that live there, love it. So no offense, but I’m good here. I like the rain and the green and mountains and the water and the fresh air. All the stereotypes of Boston = true. Hot and smelly when it’s hotter = true. Intense (using a nice word) = true. Crazy streets = true. Super friendly people = not true. They are super proud of their city, and that is great. But again, I’m good here. However. Boston Children’s Hospital? I cannot, I repeat, cannot say enough amazing things. Every. Single. Person. = AMAZING. We were completely blown away. We were cared for, we were people, not patients or a number. We weren’t crazy, they heard and understood and validated everything we had to say about Henry and our situation. Henry wasn’t the first they have seen with these symptoms. If MCAS turns out not to be his diagnosis, they are actively researching kids with symptoms like Henry’s. Holy wow. We aren’t alone. There is not an appropriate support group that we have found yet, but they are working on it. Every nurse = wonderful. Every doctor we encountered = genius. Everyone was so compassionate and truly wanted to help us. And then we left the hospital and took the T (train/subway thing) downtown on our day off. Not so amazing. Very interesting and different and Henry was in awe of the busy streets and the T. For like 10 minutes. But then we finally got to our destinations (Legoland and the Aquarium) and it was worth it. His smile makes anything worth it. We loved that we got to have a fun day and have a fun take – away. Henry still talks about it, which was our hope. He loved flying. We were blessed by some amazing neighbors of my parents, Robert and Linda, with miles for first class tickets. We can’t thank them enough. Such a huge blessing to have more room for Henry’s pump and meds and more attention from the flight attendants. And, yes,  I had Bailey’s in my coffee. It may have been the best perk.

We ended the trip with terrible hives and vomiting on the plane ride home, which further confirms possible diagnosis and resulted in IV fluids the minute we walked in the door, but he remembers it has being awesome. He remembers Billy. Our Godsend and Henry’s best bud in Boston. He was our shuttle driver from the hotel to the hospital on the days we weren’t admitted. Billy was friendly, cared about what we were doing, had a thick Boston accent (which made us all giggle), talked to Henry about his day and his favorite things. Which of course, is LEGOS. I think Billy learned more than he ever wanted to know about legos. Billy drove us to Target because we needed to get some food and random things (and of course other random things that weren’t on the list, because, it’s Target) and then picked us back up, loaded all our crap up, while parked where your are not supposed to be on a busy street in Boston. Henry remembers the fun day and the T and the hotel room. And his new lego sets. We were so blessed by so many people that prayed for this trip and contributed to this trip. Thank you.

We had to make one of our hardest decisions ever about Ellie. We wanted to bring her. We had planned to bring her. My mom was going to come along to help on the flight and at the hotel. But then, as we were ironing out details and what we would be doing…. we started doubting that decision. She would have way more fun at Grammy and Papa’s house playing in their kiddie pool, than being shuffled between hospital and hotel room. We talked with her about it and she was SO excited. Smart girl. She had such a great time… we could rest our minds and focus on learning all this crap that we are still learning about. We could rest easy knowing that she was loved on and happy. Although, I learned the hard way that FaceTime with her before bedtime = not happy. It made her sad. Which then made me sad. Well, sadder because I missed her like crazy. All that to say, we talked during the day and she kept literally hugging my mom’s iPad to hug us. And my mom would send pictures of her lounging in a huge adult patio chair, with a sun hat on, eating a snack…. oh my heart.

Since we have been home, we have been pushing Henry a lot. Doing a lot of activities, getting him more active, getting him overheated. We have to see how he responds to treatment and what his limits can be. We have gone to water slides, been camping, attended a dirt track car race, have had guests, and PLAYED. He has responded well to most of it. We have never had this before. I have tried to enjoy it, and have, but find myself holding my breath as I observe and report back and adjust and report back again (to the doctors). I need to remind myself to breathe and enjoy the things we are doing that we have never been able to do with as much ease (ok, maybe not easy, but so much different). In general, I think it can be so hard as a parent to enjoy the moment as there is just always SO MUCH GOING ON. The other day, I read a meme (those funny little phrases that people come up with – I finally learned what they were called) that said – Men, if you ever wanna know what a woman’s mind is like, imagine a browser with 3,241 browsers open. All. The. Time.  Yep. ME. And most women I know.

Now. I have all that in my brain. Maybe take a breath and a break? NOPE. Now we have to start this school thing = craptastic.

On such a happy note, Ellie started preschool at a little gymnastics place in town. I totally did the mom cry thing during orientation and felt all those emotions us moms feel all the time…. yay they are growing up, oh no, they are growing up, they are getting so big, but they are too tiny to leave at school…. etc. I do just LOVE HER TO PIECES and am so proud of her. I thought she was going to be so nervous and bury her head in my neck on the first day… but she slowly walked in and went up to the teacher, did what she was asked to do and then sat down facing the right way to listen to the story being read. I tapped her on the should and said, “bye sweetness, I love you, I’ll be back soon” She looked at me, said “bye mommy”. My mouth dropped open. I think like literally dropped open. She loves going and loves all her teachers and says she wants to be a teacher someday… but still says, “I missed you mommy” when I pick her up. And that makes it perfect. Little feisty sweetiepie.

Henry is starting a homeschool program through something called MP3, through a public school. In a nutshell, I’m teaching him, but I have guidance on curriculum and how to schedule our day and a contact to call if I don’t know what the heck I’m doing. Which is pretty much all the time. He checks in with her once a week and she keeps us accountable and tracks his progress, which is great. I feel much less bewildered – I’m now just down to feeling daunted and tired, but not alone. Our contact at the school is great, he has been getting his curriculum ordered and his actual homeschool space is almost done. Of course in the midst of creating the homeschool space, we decided to switch their bedrooms, let them pick paint for their walls and steam clean the carpet (because, well, so much vomit has happened). Henry is excited, which is so fun. And Ellie “loves her new room, because she didn’t like the other one anymore”. Ya, because that’s why we switched them. We can let her think that I suppose. She is closer to us and Henry has more quiet. Both important things.

Well, you just got a glimpse of my brain. Which is all over the place. All the time. But we are trying to make sense of it all and remembering to take breaths. It’s looking promising that we have a working diagnosis of Mast Cell Activation Syndrome. We have prayed for this for so long. The road won’t be easy.  He will have to take breaks from the meds for this disorder at times and feel like crap. The symptoms could change. He could get worse. But he could also have a more active life. Not playing football active, which I’m ok with. But it’s at least possible to see him be a kid and be in cub scouts and go swimming and play tag. And laugh. We have heard him laugh more these past 2 months than ever before. Remember when you were little and got the giggles when you were supposed to be quiet and then kept giggling because you were giggling? Henry has been doing this. For the first time that I can remember. Ellie also follows suit and it’s like music to my ears. We are trying to clear our brain more and breathe and giggle with them. Because it really is the best.

Self doubt

I think self doubt is the worst feeling as a parent. It has been weighing on my mind lately as I think most of us parents feel it most of the time. Which is unnecessarily stressful and draining. A friend of mine posted this on facebook (THE biggest network that provokes and instills self doubt in everyone, ever):

 

OMG, TRUTH.

In our house, we don’t have time to overthink all of those things, most of the time. Except at 1:00 in the morning, when we should be sleeping. But can’t sleep. And then stress out that we aren’t sleeping because the kids are sleeping and are going to wake up in 2 hours ready to play and we are wasting precious sleeping time at 1:00 in the morning and then we are so stressed thinking about the fact that we aren’t sleeping, we can’t sleep EVEN MORE. GAH.

There is so much pressure to do all of the above. But most of the time, I say screw that; ain’t nobody got time for that. We are at a place where we have so many different things to be concerned about. My brain on any given day: Is Henry swallowing well? When was his last feed? When was his last snack? Snuggle Ellie time. Make Ellie eggs. Henry’s ears are getting red, need to get him carbs. Ellie play time. Is Henry gaggy? If so, is it time to admit him? How many days has he had a hard time eating? What rate is his feed? Do we think that is working well? Ok, might be IV time. If so, call the dr. Discuss rates of IV. And how long to do it before we need to come to hospital. Ellie and Henry playing…. time to calm Henry’s activity down (literally 10 minutes after he started, or he will start getting symptomatic, which then leads to vomiting)… let’s keep Ellie active though, what can I find for Henry to do while she keeps being active… good job Ellie!….. oh phone calls from  5 different people regarding med orders, formula orders, appointments. Lunch time…. what to  feed each kid. Ellie, your body needs protein, Henry you need carbs…. and they both UNDERSTAND this. So awesome and weird at 4 and 6 years old. And repeat. Oh everyone needs dinner? Nah. Cheese and crackers it is. Then on to bedtime with meds and snuggles and books and songs and more meds and machine beeps…..  Remembering to breathe and trust and have faith. Then nighttime talks and thoughts about, are we doing this right? All of it? Nope, probably not. But we are doing the very best we can. And most of the time, we are at peace with that. With a lot of God. Without Him? Yeah right.

Henry has been admitted twice in the past month. He has been a sad boy, which is the most heartbreaking thing of all. Toward the end of the last spiral, he was crying to me saying, defeated, quietly with tears in his eyes, “mommy, I’m just so tired of feeling icky and I’m just so tired of feeling tired”. My heart broke. Henry does not whine about his situation. He does not complain. He is amazing. So, to get to this point, was truly one of the hardest things I have ever heard. Hence, hospital again. We have been trying to balance Daniel working in order to save sick time, seeing Ellie, and so many conversations with doctors and nurses, trying to get Henry back to an acceptable baseline for being at home. A dear friend came by the hospital, got caught up on Henry and our situation and how bad, ok how horrible, it has been the past bit and said, “Khari, this is a nightmare. It’s ok to say that it is a nightmare.” And in those words, there was a unexpected release for me. We always try to be positive and, even in our heads, try to not be negative about any of this, not use the hard words, not use the words that make this so real. And I think that is a dangerous path, because I can see how that would make us numb. Numb is so much worse than mad and sad and feeling.

Henry is a medically complicated child. A chronically ill child. An immune compromised child. A holy shitballs, brain on all the time and watching/discussing/deciding/preventing/band-aiding/rescuing, child. I don’t like any of these words. This is not the life I thought I would have. This is not the life Daniel and I planned to live. We are doers. We are hikers. We are spontaneous. We love to travel. We love to be active. We love sports. We wanted to do all of those things with our kids. We want our kids to have the best opportunities in life. We chose to live on 5 acres with the dream of what we would be able to DO as a family with that amount of space.  And the past few weeks, I have been screaming in my head….”IT’S NOT FAIR”. We are mourning the loss of what we thought we would have and what we thought we would be able to do. And this is a continuous process as our situation keeps evolving. If we aren’t careful, this mindset and tantrum can stay and become us. And change us. And make us bitter, resentful, completely UNfun people, spouses, parents, daughter, son, friends…. We have to be cognizant of letting ourselves be mad…. to FEEL mad. It’s ok to be mad I’m learning, because otherwise we just explode. But we need to be mad for a bit and then move on. Being mad isn’t going to change anything for the better. But it will make us more authentic to ourselves and others and be able to move on to the happy. And fun. We used to be so much more fun. We have been losing our fun a bit. Ok, a lot. We don’t like it.

So then we start to talk about fun. We have forgotten a little how do this. I think it’s easy as parents to get lost in the everyday, the schedules, the feeding, the sleeping, the bathing, the reading, the discipline, and for some of us, the added medical parts of our day, with our children, and then at night process the day and doubt if we did anything right at all. With all this – we forget. We forget to take a minute to look our kids in the eye and have a conversation, to have a tickle war, to engage with play time. We forget to be intentional. Intentional fun. What? Right now we are in a place of trying to have intentional fun. Sounds weird, well super weird, but I think it may take some practice to remember how to have fun and be fun. So, like anything else, we just need to practice. We look at our baby girl, not so much baby anymore, in her purple rubber boots, purple coat, pink and purple helmet on her pink and purple bike with a pink and purple LEOPARD print bike seat (yes, really)…. learning to “go so fast, I beating Henry”, with her mouth wide open in a joyful belly laugh…. and I shake my head and giggle, because there is so much good and so much fun. We have very joyful children. I mean truly joyful. I need to let them show me fun again and learn to turn off the serious in our life. Hard to do, but so very necessary as we have to refill our reserves and get energy for the next step.

BOSTON – HENRY GOT IN (We applied to a program at the best hospital in the country and he was accepted for a week as our last hope, for now, of a clearer diagnosis). Thank the Lord. How do we feel about this? We don’t even know. Relieved and so very thankful and emotional. While simultaneously overwhelmed and daunted by what is about to come. So much talking, traveling, getting Henry stable enough to travel, organizing funds, arranging sick time, who comes, and so on… The overall stressor of are they going to find anything, is this all worth it, what if nothing changes after all this? I feel this sort of odd pressure (that I totally put on myself), that SOMETHING has to be found, that we need to get a diagnosis, that this program/visit needs to change our daily life for it to be worth it. We have so many people praying for us, asking how they can help, taking this burden on with us; holding out so much hope and trust that this big program can improve our quality of life… If this changes nothing, will people be disappointed? Will they feel like it wasn’t worth it? Will WE feel like it wasn’t worth it? Self doubt is a devilish thing. It can get in your core. We are constantly fighting it off. There is a high chance that this program won’t find anything new with Henry. There is a high chance that our daily life will not change at all. This is so scary. But as a parent, you fight. We have been fighting for him for 6 years. We will keep going. We have to know if the best in the country see something else. We know that they will now have his information forever and will constantly be seeking answers as new gene information is discovered. And that alone is enough to make it worth it. Any chance of diagnosis or treatment is worth it and there is a chance. As quoted by an all time favorite movie:

And if there is any chance at all, we are going for it.

My sister and I were discussing how sad it is that our kids won’t understand how funny Dumb and Dumber is….I think of my childhood and I laugh all by myself at HOW HARD we would laugh at this movie. And it’s so very dumb. And so amazing. So.Many.quotable. lines that we have used for our lives.

So it’s up to us to find the funny again, and teach our children what real funny is….

And teach them this game:

And they need to be able to interject to anyone at anytime with this:

It’s just our duty as parents. You’re welcome, children, we taught you the important things. No doubt. And to those who haven’t seen this movie…. this is your next movie night. You’re also welcome. We just made you funnier.

“Sadmad”

There is a movie called “Home”. It’s a favorite at our house. It’s funny. Sweet. Has good life lessons. It’s somewhat sad. Makes the kids think about how others are feeling. There is a part where the main character, an alien, is trying to figure out how human’s feelings work. And why sometimes someone can seem really angry or mean or lashing out. He figures out that the real reason behind all of that, most of the time, is sadness. He then says…. so humans-girl is “sadmad”…? The ice is then broken and the girl opens up about her multitude of feelings. About everything. “Sadmad” is now a part of our family’s vocabulary. It does everything from make the kids giggle in a heated, big feelings moment, to make us all cry because it breaks the ice of the big serious everything going on all the time.

And really, so much of our life if serious. And hard. But in that, we have such weird crap, that it also makes it a comedy routine. Recently, I walked with to the mailbox with the kids. Both in superhero capes dashing around. Which in turn meant, I was dashing around as Henry was hooked up to 2 medical lines – GTube and his IV bag. We were in the middle of loading the car for an errand when plans changed. We don’t typically run errands or even leave the house with Henry when he is on IV because it’s such a huge amount of stuff he is hooked up to…. however… I’m still chuckling about the picture of crazy this must have been… Ellie whooshing (making that exact sound) around in her bright pink cape with her hands behind her… Henry in his bright orange cape, draped over his feed backpack, making his car fly and dash… me running beside him holding his 2 medical pumps in 2 different bags, making sure he didn’t step on a line… oh my stars.

OH MY ELLIE. She is such a joy. And almost 4. HOW IS THIS POSSIBLE. Stop it. I feel like I don’t have moments with kids, where I am speechless that often when it comes to discipline or explaining why they can’t do something or what to do when they do a certain naughty thing. Not anymore. She makes me speechless. And laugh so hard. I have to hide my face all the time. She is talking a lot. Which is SO good, but makes all the above harder yet. Because she is just funny. People just watch her and hear her and just look at me with a grin and giggle and say, “omg”. And I say, “right?!”. She is also a little superhero, swooshing and flying around the house. And a little mommy. And a little care-warrior. She loves her family so much and cares so much about how we are all feeling. And she LOVES her brother. And argues with him and puts him in his place. What a little light of ours. And a little smartypants. Henry has had an engineer geared mind from the moment he could sit up and play. Ellie is now showing that side as well, which is super fun and super daunting. They are going to pass me in the smarts department sooner than I would like.

Henry loves to learn. He is whizzing through his workbooks that we have him doing…. he knows the logic behind what he knows in math. He hasn’t just memorized addition and subtraction and some multiplication, he can actually tell me why 2×4 is 8 and 4×4 is 16. Holy smokes, pretty soon he is going to be doing fractions. Which I totally despise and can’t do…. here we go daddy, you’re up. Henry is super into (I mean, SUPER into) sea life and the ocean and what crazy creatures live in the deep. Along with this, he loves anything to do with space. He is also my snuggle buggle and emotional boy. Anywhere from snuggling completely with us, to just putting his feet on my legs…. to inching his bum to just be touching me if we are falling asleep in the hospital… This is an emotional life we have here. We run through so many feelings; thankful that we have this amazing boy, with this incredible brain and wonderful personality. Along with, if we are honest, total yearning for a life for him that could be running and playing with no suppression and restrictions.

No one ever wants to admit jealousy. I think it’s a natural feeling that gets to everyone, but most of the time, we feel it, deal with it and move on. I read something the other day from a parent of a chronically ill child that resonated with us. He admitted that he was jealous of other families. Other “normal” kids. Kids that didn’t live in and out of hospitals. Families that could just get up and go out the door with normal kid crap in tow. And that that feeling was OKAY, because of course we feel jealous. But it never means we are upset with anyone else. Or that we don’t want to hear how our loved ones are doing and what is going on in their lives. It’s the opposite. Discussing our lives and hearing about and being a part of other lives are what keep us going. What brings support and love and relationships. To which, we are so thankful.

Henry’s latest endoscopy done in December showed that Henry has a bleeding esophagus. Awesome. He has had so many of these procedures done, that we actually know exactly what the inside of his esophagus and stomach is supposed to look like. Dr came out and put the pictures on the table… Daniel and I pointed to some spots and said, “what’s that?”. Dr just said…. yeah… that’s not good. So, typically, in an endoscopy procedure, they take samples and it can cause some upset on the esophagus walls…. but he told us that he hadn’t even taken any samples… his has just been sitting there bleeding :(. All that to say, our buddy is a tough little bugger. I would be way more pissed off and grumpy than he had been. Although, we knew something was off. He wasn’t eating (even less than normal), super gaggy, very sad and pretty angry off and on.. duh… no wonder. This also means that we can no longer keep him off the bad medication. Our choice is to put him back on, with the risk of severe side effects later in life, or keep him off and his esophagus gets worse and Dr said that he would be at risk soonish for esophageal cancer. Cool. Back on the med it is…. big prayers for health and no side effects. This may be our most worrisome decision to date. All we can do it give it to God and know He has a plan. We just wouldn’t mind knowing what that is…. Like really.

DNA results from last summer’s surgery all came back normal. Currently, Henry’s specialists are going through all the data of all the testing that has been done, to see if anything else connects to each other. Most likely, he will one that will not be fully diagnosed. At this point, we know of about 5 disorders. And on top of that, an overall Mitochondrial disorder. We know that at least a dozen of his genes are abnormal, they just do not know why or what they do. That said, we are now to the point in his journey, where we need to go big. We have applied to a program at Boston Children’s that specifically targets undiagnosed diseases. We will know within a couple months if Henry gets accepted. We need this. He needs this. We need some big prayers going that he gets accepted and doors are opened.

We are currently admitted at Mary Bridge for a few days. This is our 3rd hospitalization since the end of November. We are tired to say the least. He has been vomiting intermittently for most of January. I have accessed him three times this month and run fluids at home. Time to get more eyes on him as he has been vomiting, along with other severe symptoms, since Saturday. We also need to change up his GTube feed recipe and regimen and work on a different set of IV fluid plans. The amount of dextrose going into his body with the current regimen is becoming unsafe at this point. This also means that we have to accept a more sypmtomatic normal. Even when he is on IV. This makes my brain hurt and breaks my heart. Makes me sad for him. Sad for our family. Our life is full of compromises, as is everyone’s, but when it has to do with your child’s happiness and health, it sucks. And this is just so hard.

With all that is going on, often people ask what we need or what we need help with….. This is probably the hardest question to answer. For a couple reasons.

Number one: This means we need stuff and help. This is a very humbling place to be. Something that I think God is trying to work in our lives at accepting and getting over pride. Ugh. So tough. Very thankful. But still a very weird place to be. I think it’s hard  for most everyone to accept help or admit that they need it… the first 6 years of our marriage, we were the helpers, the doers, the donators of time and money. Then God had a different path for our lives mapped out for a season (we hope it’s a season and that the season has a change soonish… ). Infertility, Henry’s health issues, high risk pregnancy with Ellie as Henry continued to rapidly decline, more serious Henry health issues, major surgery for me and now continued health issues, and Henry’s symptoms progressing with no further answers.

Number Two: We have no idea how to respond. We don’t know what we need. Or I should say, that most of the things we need, can’t be helped right now. We need rest. More than just physically. Our brains need rest from all the serious day to day decisions and nursing care. Yesterday, Henry’s doctor said, “you know that decision fatigue is a real thing, right?”. Well that’s good to know, because to say that we are worn out, is an extreme understatement. Figuring out meals. Ugh. I hate dinnertime. Although, I think most parents of young children hate dinnertime. It’s just a big ball of crazy at this time of day when kids are tired and hyper (at the same time). I hold guilt, because I should be enjoying family dinner time, catching up, talking, etc… oh wait, in my head I’m saying, “just eat your freaking food, so you can go to freaking bed”. All this to say, we don’t know what we need. Some nurse friends we know are trying to come out once a month so Daniel and I can go out for a few hours. Friends bring meals now and then. Others go to Costco for us. Some are a listening ear. These are all great things, and we are thankful.

But I still have my moments. I had a small temper tantrum myself the other day. Ok, maybe a big one. Yelled. Slammed the door (HARD, like, shook the house hard), actually asked the kids OUT LOUD if I was invisible. Thinking about this makes me a bit ashamed, but mostly makes me laugh at how ridiculous I was…. the kids were pretty much just staring at me. And then moved on to playing with whatever it is that they were doing. I came out and apologized, had a chat with them. Henry then asked me if I was just “sadmad” and gave me a hug.

And in all of this is my rock husband, partner, father, leader, friend… I know he is tired. I know that he feels like he can’t do what men do: FIX things. Can’t fix anyone at his work (inmates), can’t fix his first-born, can’t fix me…. and on top of all that, has to accept that we need a village. More than some. So then we laugh. Because this is all we can do at times. And it’s our favorite thing to do together. And we know that in all this super serious shit, is a plan. And on that we feel safe. So when we remember to feel safe, we just giggle at the insanity that is thrown at us. Because this really is insane.

Take the good and take the bad, this is the only time we have. I heard this on a song today. I struggle with feelings of guilt whenever I need to take care of myself or take a break or am at my limit. Because I don’t want to miss anything. I want to be there for all of it and, on top of that, appreciate all of it. Because they are only little for so long. And in the deep of my brain and my gut and the pit of unknowing exactly what is going on with Henry’s body, I grasp the time we have. I have a deep fear (as all parents do), of the limited time we have with our children. And in Henry’s case, if we hadn’t caught what we did a few years ago, he already may not be with us today. What else have we not caught? For now, he is stable. Everything we can test checks out. At this point, the unknowns with him are not dangerous, but then again, they are unknowns. The unknowns are, to an extent, the same with all of us not knowing what each day will bring. So then I again, have to take a deep breath, give my kids a huge snuggle and kisses, laugh with them, discipline them, take breaks, and biggest of all, give it up to God.

For now, this is it. This big jumble of complicated crazy that we try to keep reigned in. We will continue to make it up as we go, deal with the feelings, frustrations, complications, blessings and the multitude of other things that come with it. “sadmad” and all.

Normal… ?

Legos have officially taken over our house. I know, it could be worse. And let’s be honest, it’s actually kind of awesome. Daniel and I love to do them with our kids. Or stay up until 11 pm doing them. All by ourselves. And for us 11 pm is LATE. Legos are awesome… until you step on them. ALL DAY. Henry drops them on the floor all the time. But instead of picking them up like a normal human being, with his hands… he uses his toes to grip and get them from the floor and THEN gets them with his hands from his toes. And I don’t even notice that this is weird right away. And whose fault is this? MINE. Oh my children. I’m sorry for all the weird crap you are learning and will continue to learn from me.

I think that is life though, right? We all have our weird habits, different daily routines, fears, and insecurities. We all try to act “normal”, whatever that is, and put on a brave, “we have everything together” face. And that’s a bunch of BULL. HA. We are all just fumbling along. I am thankful that I have the Lord to rely on as my rock, because without it, I would be a hot mess. Well, even more of a hot mess than I already am…

All this to say… I have “normalized” our life so much in the past few months. I know it’s a self preservation tool to survive the ridiculousness of our days. Until the other day, when one of Henry’s doctors totally called me out on it inadvertently. Thanks my friend, for pointing out that my “brave, normalizing” face is a bunch of crap (in not so many words). He may have actually laughed at me, saying something to the effect of “oh right, discussing a port and GTube and meds and change of meds and constant symptoms and different hospitals and nurses and pharmacies…. and then try to add school in there… all in one kid”. Ok, so laugh he did. One of the many reasons I love Henry’s doctors. They KNOW him. They KNOW us. Amazing.

It’s just all too much. WE ARE TIRED. Every part of us is drained. You know how a decision-making process is exhausting? Like, when the decision is finally made in whatever it is that you have to decide, is done? You think, “Whew, that’s over, let’s rest and then let’s move on”. Well, in our family… TOO BAD. Tired? Too bad, God is going to give you the strength to make another big decision. And another. And another.

We have had some test results trickle in over the last couple weeks. The results are confusing, relieving, sad, frustrating, and hard to explain; Mitochondrial cells and function are tremendously complicated. And the test results are not all in yet. There was a huge kerfuffle with one of the tests that was supposed to have been sent out; the DNA test on the muscle biopsy. And it hasn’t been sent. And the hospital that is currently holding the sample in their lab is refusing to send it out. Ask me how we feel about that one. Henry’s doctors are now in the middle of obtaining ownership of that sample and sending it out themselves. All that to say, it will still be a couple months in the least before we have results of that test.

Here goes my attempt to explain test results, bear with me:

• The first test from the muscle biopsy was to physically look at his Mitochondrial cells; their size and shape and make sure they are FORMED correctly. This part looks great. This is good news.
• The second test from the muscle biopsy was to watch HOW the Mitochondrial cells function. Your body has 5 Mitochondrial complexes – this is how we get energy. Each one of the 5 complexes plays an important role in the chemical process that produces energy for our bodies. We were “hoping” to find a deficiency in one of these as that would be the easiest, most possible thing to “fix” with a Mitochondrial disorder. Henry’s came back with 4 of the 5 in OVERDRIVE. They are functioning between 150% and 200%. This is a red flag. His Mitochondrial complexes are working way too hard, yet his CoQ10 levels are low (another energy source in your body), and he still has very little energy. This is not good. This points to a bigger problem. Most likely in his genes/DNA. This is sad, because sometimes you can “help” the complexes along if there is a deficiency, but you can’t take anything out. And you also can’t, yet, fix genes/DNA. However, in our world, this is also emotional because these are numbers and results that validate that there is something wrong. His body is just not working right.
• The third test that we need from the muscle biopsy is the DNA test. This is the one that has not been sent out and will not be sent out until Henry’s doctors obtain control of the frozen sample. This is a very important test and it BOGGLES MY BRAIN as to how and why this test is such an issue where it currently lies. Most of your DNA lies in the nucleus of your cells. However, there are a dozen Mitochondrial cells that hold DNA in them. This DNA in Henry has not yet been touched or tested, because you cannot test this DNA in a blood sample. This could be a huge test to put a name to what is going on with our sweet Henry. It could also come back normal as Mitochondrial diseases can be so hard to catch and diagnose.
• Henry was in the hospital again a couple weeks ago for another upper endoscopy procedure. This was to take a look at the inside of his GTube button hole in his tummy and see how his Eosinophilic Esophagitis  (EoE) is looking (EoE is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of white blood cells called eosinophils. Because this condition inflames the esophagus, someone with EoE may experience difficulty swallowing, pain, nausea, regurgitation, and vomiting). We have been treating this condition with a strong PPI (reflux medication) and a steroid swallow twice per day. However, new research is showing that the PPI medication he is taking can be very dangerous in the long run if used for longer than 2 years. He has been on it for almost 3. Insert: panic attack for parents. His esophagus looks pretty good, but the inside of his tummy is looking red and irritated…. most likely from the bad medication. SO, we now have the most awesome choice of: A: leave him on medication that is keeping the EoE at bay, but risk the very bad damage in the long run. B: Switch to a different medication that will most likely make his acid reflux feel worse and put his esophagus at risk for further damage. Super cool. We are a few days into trying option B. So far, can tell he isn’t feeling as well (although typically very hard to pinpoint from which disorder his symptoms are stemming). We are also committed to another endoscopy procedure either Dec 5th or Dec 19th, to ensure his EoE is still under control.

We are a few months into his new baseline without IV fluids. His overall new normal is tired, cannot do much for over 30-45 mins, dark circles under his eyes, not sleeping as well, and not eating as well. The summer has been awful and a huge struggle. The heat amplifies every symptom for Henry, therefore our time outside was very limited. However, he had to play some, so therefore some ketones built up at times the past couple months. We had to access his port at home a couple times for 3 days of home IV fluids. The new process worked to keep us home and out of the hospital for elevated ketones.

Thank goodness it is now Fall. This is my favorite season! And even more so now that the weather is cooler and we can be outside… However, with this season, comes school. Until last week, I thought that we would be sending Henry to school 3 mornings a week, I would have some Ellie time, and it would be a great fit for him. Oh ya? Just kidding. Not that easy. We received the test results, squashing, for now, the option of help with his lack of energy. Over the summer, his ability to exert energy has been lowered with his new baseline. In addition, we are changing up medications and have yet another procedure scheduled in 2 months. I started suddenly, getting this nagging feeling in my mom-gut (which is annoying, because this is my indicator of what needs to be done…. God trying to tell me something feeling, therefore I better listen)…. that school was not going to be a “given” for Henry this year. Or maybe ever. I don’t like this particular feeling. I never wanted to homeschool my kids. No offense to ANY homeschool moms or kids. I just selfishly, stubbornly, never wanted to be my kids’ teacher and plan their education. Well, TOO BAD. Daniel and I have talked a lot to each other, Henry’s teacher, his doctors, his nurses, friends, and family in the past couple weeks… and prayed. A lot. Mostly because I wanted the answer that I already knew, to be different. Nope. Here’s to another tough decision. We are homeschooling our kids. For now. For at least a few years. But we know it’s the right one. I have to get over my big, bad self and stop having a temper tantrum (inside my head and out). But, at the end of the day, once the decision was done and processed and made, we are relieved. We are thankful for the tools and support and new journey ahead. We are at peace. And we are tired.

It’s hard to look at Facebook lately as it’s full of back to school pictures and school buses and desks and recess. This is not our path right now. And that’s hard. We worry about Ellie missing out or being deprived. But at the end of the day, she just wants to be with us and with her brother. So, she is quite happy with this decision regarding school. My sister told me recently: “remember, they are little, they don’t know any different. This is their normal. They don’t worry or think about missing out.” Thank you sis, these words are so true and ring in my head all the time to ease some worry. For now, we do a lot of Legos, board games, hide and seek and book reading. And our babes are happy. For this we need to feel thankful and at ease and joyful. We need to focus on enjoying these things and the lengthened time at home with our precious children. At times, this is easier said than done, as so often we are so drained from the bigger, harder things… so often we feel so tired from the bigger things, that we don’t feel we have the energy to just have fun with them, to grasp the sweet times.

We have so many mixed emotions. All the time. We are currently listening to Henry’s congestion get worse, watching his ears get redder, his irritability get higher, his waking at 4am, his lessened appetite … this is the start of a downward spiral. Our conversation then turns to, “How far will it go this time”… It’s just sit and wait and observe… Will we need to stick a needle in his chest in 2 days to access his port and do IV fluids? Will he just hang out here with these symptoms for awhile? Part of being the parent of a unique, chronically ill child, is that we can never turn it off. And that is so exhausting. We always have an ear listening and our eyes watching out for the signs.

In all this, Henry and Ellie are such amazing little people. Henry is a trooper and tries his very best to power through and be 5 and have an imagination and play, all while feeling like crap. And Ellie, always knows when he feels worse. And she is the most sensitive, sweet sister to Henry. Rubs his cheek, gives him hugs…. says “come on, Henry” and plays rescue vehicles with him. And then, in perfect 3 and 5 year old fashion, they fight. They are so annoying when they fight. Henry will say “Ellie shush! You are singing (which is really yelling. And hilarious) too loud!” Ellie says “Henry, YOU shush. Shush face!” Again, I apologize, children for the weird things you hear me do and say…. But the thing that is the biggest punishment to them, is when they are apart. Even when in trouble. They simply have each other and love each other so much and that is a most wonderful blessing.

We are in constant amazement at the strength of our children, along with the comic relief they provide. And for us as a family as a whole. We are still going. Daniel and I still like each other. We still laugh at the same stupid things. We will still like to go on adventures – this just currently may be to the store instead of up a mountain. We like to quote dumb movies lines. We love to narrate what dogs (and babies) are thinking; in the voices we deem fitting. We dance as a family. We build forts. Board games are becoming a main request from the kids. We have picnic dinners; mostly inside as the weather has been too hot. We started taking the kids to see movies in the theatre (has air conditioning!) and watching the kids laugh and eat treats and Ellie eat “mommy’s popcorn”… makes the daily tasks melt away… even for a little bit.

It’s back to basics for us, back to family time, not stressing about what we SHOULD do. We are thankful for all the support of those rallying around us. Prayers for the DNA test yet to be sent, for strength for this daunting, seemingly never-ending journey, and for energy to be spent enjoying our daily life. And more sleep. Even just an hour more. Or maybe a nap.

Hugs