You may have heard by now, Isaac has another bronchial esophageal fistule – this means that he once again has a hole in his esophagus, that connects to his lung, that connects to his trachea. Seriously – like clockwork this is happening.
In good news, he is totally not sick. We’re not sure how or why, as this always makes him pretty sick – we may have caught it really early or he miracles are happening. Either way, he’s not letting this get him down. The doctors in Ohio, who once thought we were imagining these fistulas did get to see them, and they finally agreed that the fistual does exist.
We talked to them a few times, and decided as long as Isaac is healthy and happy we’re not rushing up there. We are already scheduled in a few weeks, we’ll see what that brings.
Remarkably, Isaac has had a great week. He has run the park, taken a few walks and particpated in Vacation Bible School. To see him dance and sing at VBS is always a spiritual experience, he LOVES it. His joy is palpable.
For now we will keep on trudging along, fingers crossed that the healthy streak continues!
… as much as we can handle, that’s how the saying goes – right? Special needs parents hear this one and variations of it a lot. It’s a hard one to respond to. Another hard one is “God gave you Isaac for a reason”, how do I respond to that?
Deep down, when somebody shares one of these with me I know they mean well. I know that they are complimenting me. I also suspect that they are thinking something to the effect of “Thank God I’m not her”, and I’m really okay with that. I have many of those “there but for the grace of God” thoughts – I often realize how lucky we are.
I also know that these kind words can make me pretty crazy, it took me a while to figure out why. It comes down to a realization that MY God wouldn’t have put Isaac through so much as a compliment to me. I don’t think God thinks so very highly of me that he made Isaac more complicated than most. What I believe has actually happened is that Greg and I have handled what God gave us.
For a long time I wondered about God, not just because of Isaac – I simply had doubts. I believed in a higher spirit, but I didn’t put it all on God. For the first year of Isaac’s life I never prayed, I saw no reason – the doctors were going to fix Isaac, not God. During this time though I heard a lot of people tell us they were praying for Isaac, and it started to mean something to me. I wasn’t sure how those prayers were helping, but I know they were making us feel loved – and that was meaningful.
Over the past few years I have grown spiritually, and I feel like that allows me the right to believe that MY God gave me the gift of 2 children, not because I was more able to care for a kid like Isaac, but because I wanted two beautiful kids.
One of those kids happened to arrive with some crazy issues, and we have moved mountains to make sure he gets the care he deserves. When someone tells me that I have Isaac for a reason, or because God knew I could “handle” him I want to ask them what they would expect from me? Would they expect us to give up on him or ourselves? We are doing nothing that nobody else would do. I know that anyone of my friends or family that was faced with what we have been faced with would have responded the same – because that’s what you do when you have a child, you move mountains. In fact, if I didn’t believe you would do what we have done we probably aren’t friends, because I can’t think of one person who wouldn’t rise to the occasion.
We have hard times, and we have moments that make us wonder what we are doing and how we’re going to get through it, but get through it. We are not any more special than any other parent. We are raising our children under extraordinary circumstances.
I have to admit, I’ve been a bit on edge lately – Isaac is about due for a major illness. It makes me jump at every sign of a maybe illness. So, last week when he developed a sudden high fever and proclaimed “I don’t feel well” we rushed to the doctor….. only to find out he has strep throat! We’ve had some issues with fever since then, but have had two really good days now with no panic 🙂
During all of this chaos and worry I recalled a recent conversation with Isaac’s horseback riding instructor/therapist. She has three disabled children, and we started talking about our kids – and what makes them what they are.
She brought up an interesting thought, that maybe our kids do so well because we have accepted them, and their diagnoses for what they are. She talked about facing some scrutiny for continuing to have children from those in her medical circle, and her feeling that she would get what she would get (by the way, she has 4 healthy boys at home as well). She said that in a way she felt sorry for these parents who just stopped. Who then devoted their lives to altering and saving the life of the one child they had. There is a fine line between accepting what you have and still fighting, and crossing into an area where you fight so hard that you forget to accept the beautiful child you have.
We can’t change our children’s diagnoses, we can’t change what they were born with or even how they are looked at.
We can ACCEPT them, we can accept their abilities and disabilities, we can encourage them to do everything they set out to do, and we can still fight for the best care and the best services offered. In accepting them and the life they have brought us, we can find their happiness, and a lot of the time that happiness will lead to our happiness.
A few years ago I saw a contest that was titled “Snot your average kid”, sponsored by a company called Boogie Wipes. If you’ve never heard of these they are pretty awesome……. they are great for kids with runny noses, and they are also great for cleaning the neck of a very cute kid with a trach 🙂
In the end, Isaac was one of three kids chosen to grace the packaging of Boogie Wipes! His story of being the “unofficial trach spokesman” in the hospital won him the honor. Amongst other things, Isaac has always been really great at showing off his trach to new trach families and easing a few of the fears that come along with a new trach (for moms, dads, and kids!).
Since winning the contest a few years ago we always make sure to check the Boogie Wipes container when we visit our local stores….. yesterday a friend from Florida sent a picture – she found Isaac at her local Target!!
We were so excited, after visiting a few local stores we found some to bring home for Isaac. He kept saying “that’s me”!
Next time you visit your local Target or Walgreens keep an eye out for our boy 🙂
Isaac had an incredible 6 month stretch with no illness, it all came to an end late last week 🙁 I’ve kind of been waiting for this, because we are so used to the recurrent illness when it comes to Isaac.
He suddenly seemed more tired on Wednesday, then required oxygen overnight – not typical. A quick trip to the doctor confirmed the beginning stages of aspiration pnuemonia 🙁 We’re coming to terms with the fact that this just going to be a way of life for Isaac for a while.
Luckily, his typical antibiotics have done the trick, after a few days of nasty fever our boy is back this week, just in time for last week of school fun in preschool 🙂
In true Isaac fashion he just COULD NOT miss a friend’s birthday party on Saturday, he had a blast and is so thrilled to have school friends this year – it’s pretty awesome when we can talk about that cool stuff 🙂 He paid for the party with a temp of 102, but I’m pretty sure in his eyes it was totally worth it!
I knew when Isaac woke up Saturday morning he wasn’t feeling well, but the lure of that party was too much – he had been talking about it ALL week. The part of me that holds all common sense said he should stay home and rest, but my heart just couldn’t do that to him.
Isaac misses so much because he is sick, or in the hospital, or has a stupid PICC line…… it’s just not fair. When we can patch him up enough to get him to something fun, we have to. Our sweet boy has spent holidays, his own birthday and months on end in the hospital – when he should have been at home opening presents, playing with his friends and siblings, or running outside.
What we’ve learned is that when we have the chance to have fun we have to grab it.
Isaac has now decided he would like a summer birthday party so he can have an outdoor party (that’s hard to do in November!), and of course because he is Isaac he would like a “Frozen” party (again, outside in summer!)….. so, the planning for an outside Frozen birthday party with a bouncy house has begun!