Medical Equipment and Mixed Emotions

This past week, we've entered a new phase of X's development where he's ready for medical equipment. An order was written and submitted for him to get a bath chair, wheelchair and stander. Another order was written for him to be fitted for DAFOs (a type of brace for his feet/legs). An example of the bath seat and a DAFO are below.

A bath seat

DAFO

As great as these devices are for X, I experienced some very mixed emotions about them at first. The day we were told the orders for this equipment had been written, I found myself a little misty-eyed off and on. I've become used to hearing hard things. I think it just goes with the territory when a child has special needs. Still, there are times that hearing something I knew was coming catches me off guard and I'm not always prepared for the range of feelings and emotions that get brought up.

Having a special needs child is - for most parents - not anticipated. In X's case we had no way to know or prepare for what his needs would be. There are still a lot of unknowns even now that he's 18 months old. Much of his development and abilities depend on him. We're doing our very best to see that he receives the right care, support and devices to give him every opportunity to reach his fullest potential. This equipment is one of many steps that need to happen to help him achieve the best possible quality of life that he can. 

Over the past few days, I've had time to think and reflect on my feelings about him needing medical equipment. The sadness that hit me initially has dissipated and now I feel nothing but excitement! What a wonderful time we live in to have these devices available! I'm excited to see how having these devices will improve and enhance X's life. He'll finally get to experience things in a way that he's not ever been able to before. 

I'm sure there will be many other times in X's life that we'll be told something that brings up more mixed emotions. I learned a long time ago that this will happen often and when I least expect it. The best thing to do when that happens is to face those emotions and allow myself to feel them. It's ok that I'm sad sometimes; but at the end of everything I've always been able to find a reason to be thankful.

Dear Life: BRING IT ON! I accept your challenge!

Choices

One of the hardest parts of having a special needs child who is medically complex is the constant need to make choices regarding their care. It's not an easy task. It's not as simple as choosing a good pediatrician,  deciding whether or not to vaccinate, choosing cloth vs disposable diapers, etc. I remember those being the (at the time) daunting choices we were making before X was born. After he was born, our choices became much more critical; even life and death at times. 

As X has grown older, it seems like those decisions we need to make become increasingly difficult. We've had to choose over 20 providers for X. We have to weigh the risk and benefit of several medications. We have to make choices regarding what tests and procedures are beneficial and which aren't; knowing that often times even the necessary ones are painful and difficult for X. We have to choose which surgeries are in his best interest and which aren't. There's so much we constantly must make choices about. The difficult part is that we aren't the only ones who have to live with the consequences of our choices. X does too. 

This past week, X was acting very abnormally. He's typically a very good sleeper. He's usually very happy. A few nights ago, he went to bed happily. Four hours later, he woke up screaming and crying. He was inconsolable for 4 hours despite trying everything that usually works. We knew we/he needed help, so we called his wonderful pediatrician at 2am. She asked questions and after hearing the level of discomfort he was in, she suggested we take him to the emergency room. She was concerned that he may have a possible bowel obstruction.  

We were instantly faced with the choice of taking him in or waiting it out. The roads were bad from a snow storm so getting to the closest children's hospital 45 minutes away wasn't possible. This meant taking him in would mean going to our local hospital where they really aren't equipped for the needs of children; especially special needs children. It meant an exposure to illnesses and germs that his weak immune system may not be able to combat. It nearly certainly meant having to watch him endure tests and procedures that would be hard on him. Or we could wait it out and risk a potential disaster. Nothing about this was an easy choice. It never is. 

We opted to take him in. He went through hours of tests and procedures. He was miserable and crying. They finally figured out he didn't have a bowel obstruction, but he did have some other issues that in the doctor's eyes needed to be addressed urgently. Around 8am, we were given two choices: they could admit X and transfer him to the children's hospital or we could go home and see his pediatrician later in the day. We opted to go home and see his ped later. 

I'm sure the doctor thought we made the wrong decision. But, we know X really,  REALLY well. The issues the ER doctor was convinced were urgent are "normal" for X. We deal with them all the time. With no bowel obstruction, it was best to go home. So we did. It turns out X is just fine and was having a harder night with some of his regular challenges. 

We've made many hard choices the past 17 months. There are many more we'll still need to make. We try to do what any good parent does: make the best possible choices for our child that we can. The picture below perfectly sums up what making these choices is like: