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.