I’ve been wanting to write this post for over a week now, but any time I’ve had any time to sit and do it, exhaustion wins and I’ve done, well, nothing.
I’m really struggling right now, both physically and emotionally.
Right now I’m sitting in my room listening to Grayson scream his head off in his crib. He’s so tired and desperately needs a nap, but he refuses to lay down and go to sleep. These days, Grayson is a really difficult child. Sleep has been awful. He barely takes naps, and is taking over an hour to fall asleep at night. He wakes up multiple times a night crying. And during the day he cries/whines/fusses off and on all.day.long. It’s really frustrating- on him and me. Most of the time it’s because he’s either tired (because he won’t sleep) or he’s frustrated with the lack of cooperation of his body. I’ve said before- he desperately wants to crawl and he’s so close- but his front just won’t coordinate with the back. So he cries. And I can’t say I blame him, because I would be mad too, but sheesh, listening to it all day gets really old, fast.
Medically, he’s doing pretty well. He hasn’t had any seizures (that I’ve witnessed) in weeks, and he hasn’t been sick. He still throws up relatively frequently, but it’s better than before. I wish we could push his bolus feeds to a higher rate so he could be off the pump more during the day, but I’m grateful that at least he’s not on it 22 hours/day anymore, and he’s still gaining weight. We are STILL waiting on his genetic testing- the supposed 15 week turnaround was up June 23, so it’s been more like 19 weeks now. That’s a long time to wait for results from one vial of blood. I talked to someone Friday who said the testing is actually complete, they are just waiting to sign off on it and release it to our doctors- whatever that means. She said it should be early this week. We’ll see.
I think all this would be easier to handle and more tolerable if I felt better and had more energy. But I feel awful most of the time and have zero energy. When I’m not eating or just ate, I feel either famished or nauseus. I’m still throwing up regularly, and like I said, have no energy to do anything. I have so many things I would love to do, but I’m just so tired.
This pregnancy has been hard. First of all, it was totally unexpected, which has been a challenge to come to terms with. I felt like prior to this summer, we were finally in a place of acceptance and being comfortable with the unexpectedness of having a child with special needs. While Grayson is a lot of work and our path looks different than most, I was in a good place. I had support, knowledge and a plan going forward. The genetic test we are waiting on was supposed to be a big answer as to whether we should even have any more kids. Now, well, we are having another kid not knowing much about our chances of Mito recurring in our family. It’s scary.
With Grayson being so difficult at the moment, I question a lot how this whole thing is going to happen in February. And I know it will, because we don’t have a choice. We will make it work- I just wish I knew exactly how so I didn’t have to worry about it. I’m upset that this pregnancy has already taken so much time and energy away from Grayson, and I worry how much more time a new baby will take away from him. I’ve heard from so many people what a gift a sibling will be for him, and how he/she will probably motivate him in his progress, but I know it’s still going to be hard at first. Really hard.
All that being said, I am excited about this baby. Although I am definitely NOT ready for the arrival yet, I know that meeting him/her for the first time will be amazing and he/she will be the perfect addition to our family. I told my mom I feel horrible for having some negative emotions about such a blessing, but she said just because something is a blessing doesn’t mean it isn’t hard.
In a few weeks, Grayson starts school and we will have to be in more of a routine than we have this summer. It will be a very good thing. I know hard times like this don’t last forever, and things will get better. There are so many good things to look forward to- I’m just trying to push through and survive this season.