New Normals and a Crazy Awesome God

I feel like every mom could write a post about being exhausted. Never enough sleep, constant worrying, always on alert, etc. Being a mom of a kiddo with special needs, seems to have a whole new layer of exhaustion. I am by no means discrediting the exhaustion of every parent. Being a parent is flat out exhausting. But because the only lens of being a parent I have is being the parent of a special needs kiddo, that's what I have to go on. In a "normal" week, Bren has at least two appointments. He either has speech and a weight check or speech and PT. Sometimes, all three of those line up on the same week. Thankfully those are just in a neighboring town and we don't have to drive the hour to Madison. Some weeks you have to throw Madison appointments on to those already standing appointments. Some weeks we have to throw an extra appointment on if Bren becomes sick. Some weeks he has his WCC. Those are just the appointments for Bren. That doesn't include any of my o...

Since the time Bren had his MRI we knew there was a high likelihood that Bren would be diagnosed with Cerebral Palsy at some point. Bren had been doing so well and defying all other odds that we were beginning to think he would defy that one too. Then I started noticing things that weren't quite "normal". Now, Bren is our first child but I had done enough babysitting and working with children that I knew something was off. Bren started having arm movements that seemed involuntary. His arms were becoming tighter and he fought me a lot more when I tried to move them. His head control started to decline a bit. It was at that point I knew, Bren wasn't going to defy the odds of having a CP diagnosis. March 13, 2018. This was the day that Bren's physical therapist gave us the unofficial diagnosis of Cerebral Palsy. Even though we knew it was coming, it was still hard to hear. We weren't shocked. We were hurt and angry. Specifically, I was mad at God. Why had God a...

Since Bren has been born we have always had doctors or specialists telling us what we can and cannot do with Bren. We've been told how much he needs to eat and how he needs to eat. We've been told what activities and therapies to do with him. We've been told that he has to be on certain medications. It's never felt like we have had a choice in any of this. We didn't have a choice in whether or not our child was born with special needs. We haven't had a choice in any of his treatments. We haven't been given the freedom to let Bren show us what he can do. We so desperately want what's best for Bren. We trust that the doctors and specialists know what they are doing far better than what we know. But, there are days that I wish we could: -Let Bren tell us when he is hungry rather than feeding him on such a strict schedule. -Let Bren tell us how much he wants to eat. -Let Bren be a kid and not have to worry about different therapies and doing them throu...

EEG. That acronym is one that I never want to hear again but will likely have to hear it a few more times throughout Bren's life.  EEG = Electroencephalography. Or I as like to call it, the thing that makes my child cry uncontrollably. When conducting an EEG, they have to put leads on your head. These leads require glue, lots of glue. They also require pressurized air. Bren HATES the sound of the pressurized air and he screams and screams while they put them on. Then when it comes times to take them off, he screams from them pulling his skin and what little hair he has on his head.  The EEG measures brain activity. Bren's would tell us if he was having seizures. I think that was the scariest thing. Finding out that my son was having seizures was scary and hard to deal with. I had no idea how to handle seizures. I knew there was medications but that as about it. I had no idea how to physically tell if my son was seizing. So in a way, the EEG was helpful, but I wish my son w...

Bren had quite the big month at 3 months old. He learned how to roll over. He started eating almost everything orally. Bren learned that he had a voice and that when he used it, he got attention. He learned to smile and laugh and by golly they are the best. He showed us that he was going to develop as normally as possible for a 3 month old. At three months old, Bren was experiencing reflux and abnormal brain activity. His abnormal brain activity essentially meant that he was predisposed to seizures. One week towards the end of month three and the beginning of month four, Bren was experiencing silent choking episodes. What I mean when I say that is, he was visibly trying to get something out but was not coughing at all. One night he passed out after one of these episodes. He wasn't breathing for about 30-45 seconds and I couldn't wake him up. It was scary. Gut wrenching scary. I was home by myself and didn't know if I should take him to the ER or not because he seemed to b...

I mentioned in a earlier post about the support we have received throughout this adventure. We've said it a million times and we will continue to say it, it takes a village to raise a family. And by golly, we have the best village there is. To our family- Thank you. You've been there for every phone call, every text, and every picture. You consistently check in on Bren(and us) to make sure things are going the best they can. Even though we mention how overwhelming your support can be, we really appreciate it. To our friends(who have basically turned into family)- Thank you doesn't feel like enough, primarily because it is not. You've made us meals, helped pay for medical bills, bought us gas, and coffee(lots and lots of coffee). You visit. You check in on us. You help care for Bren. You've learned the uniqueness of Bren and how to feed him. You've endured many rant sessions about medical decisions. You've sat with us through the tears and listened to our...

Most of Bren's first month was spent in the NICU. There was not a lot that was focused on during his first month. We got use to being at home with a newborn. We had appointments right away with his primary care provider, and by right away I mean the second day we were home. He had weekly weight checks but that was about as much doctor interaction we had, which was nice. We had lots of visitors, it was like Bren was a celebrity. Month 2 hit and that's when we realized the craziness that was going to be our lives. Bren started speech therapy. Which I thought was crazy, how on earth do you do speech therapy with an infant?! The amount of times I have been asked that question, only validates that I was not alone in my questioning. So let me tell you what you do in speech therapy with infant. The ST watches him eat. While she does that she is checking his swallow, his suck, and his lungs. The first few appointments, Bren was not able to eat from a bottle and so we did taste tria...