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.