Sweet Simple Shower

As a mom of a special needs child I often find joy in things that would seem menial to most. Milestones come at different times for our children, and sometimes things that seem like minor achievements for average children are like climbing a mountain for our kids. When one of those goals is achieved by our children it feels like a miracle happened; like we are kids on Christmas day. Today was one of those days.

This has been a big week for Zeke on multiple fronts. He started using new words this week which is huge for him since his primary expressive language has been sign language for quite some time. His newest word, and quite possibly his new favorite, that he started this week is “no”. When my other children started telling me no, I will admit I was annoyed. It seemed like complete and total sassiness in a pint sized package, and seemed like an awful foreboding sign of what was to come as they became teenagers. With Zeke though, this milestone brought a complete different set of feelings. It didn’t matter that he was saying “no, no, no” when I asked him if he was ready for trach care; to me it sounded like the sweetest heavenly response of “no” I had ever heard. With every new word Zeke is able to verbally express I get more excited for his accomplishments.

To top off all the feels of having Zeke tell me “no” yesterday, today he continued the pattern of growth. We have started trying to desensitize him to wearing a cpap mask. This is the next step to see if he can tolerate it, to explore the possibility of it potentially being a way to manage his sleep apnea without the tracheostomy in place. Our nurses haven’t had much success with getting him to wear it for more than a minute or so, but today he pushed the limits. After I got home Kyle tried it on him, and I proceeded to try to make it a game of taking a silly picture of his mask. He kept running around trying to hide from my pictures, and managed to wear the mask for over 5 minutes, which is the longest he has ever kept it on. SUCCESS!

The absolute biggest, most shocking, wonderful achievement came before bedtime. Our night nurse Melissa was taking Zeke to use the restroom, and I heard her call from the bathroom asking if he has been using the shower. I laughed and said absolutely not, he still hates the water. Zeke has literally hated bath time since birth. The only way I could get him to even remotely tolerate the water pre-tracheostomy was to have him in the shower with me while I showered. I have often described it by saying that when I would put Zeke in the water, he would act as if I was dipping him into acid. His reaction was quite literally that severe. Do you think I’m exaggerating? Check out this photo from Great Wolf Lodge; fun times.

After Zeke got the tracheostomy the thought of him being in water became terrifying not only for him, but also for me. If he were to submerge his trach in the water, then water would literally go straight into his lungs if he were to inhale. Between his hatred for the water, and my fear of him drowning from water getting into his tracheostomy, a traditional bath time just wasn’t worth fighting. It wasn’t worth his tears, or my mental state. So Zeke has been getting baths in his bedroom with a wash tub on a bath mat for the past three years, with the occasional kitchen sink bath that is a mixture of a screaming banshee, wrestling an oiled pig, and feeling like you are going through a drive through car wash with the windows open. Tonight though that all changed.

After Melissa asked if Zeke has been showering I walked into the kids bathroom to see why she was asking. She told me that Zeke had pointed to the shower like he wanted to get in after he got through using the restroom. I was surprised he asked to say the least, but since it was his idea, I opened the shower door to see what he wanted. Zeke proceeded to point at the shower head and signed please. I asked him if he wanted me to turn it on and he said “yeah”.I proceeded with caution, but thought if he wants it, I’m going to do it. I turned on the shower, handed him the shower head, and he immediately began to giggle. I WAS SHOCKED. Zeke was wanting to play with water! I let him spray it for a little bit, and then he pointed at this little tub that the girls were playing with in the shower. I told him he would have to get in the shower to play with that, and believe it or not, HE GOT IN. My mind was officially blown at this point. He stood there for a bit spraying things down, and sprayed his shirt. This annoyed him, so I took off the shirt. Now he’s standing in the shower, in just a pull up. As he continued to play, I took the shower head and started playing with him and spraying his feet. I intentionally sprayed his pull up to annoy him and see if I could get him to want it off as well. It worked. So now I have a naked Zeke, in the shower, with the water on. Is this a dream? He continued to play, I continue to spray him, and eventually he decided to sit down and play. He ended up spraying himself down and really enjoying it. I asked him if he was done and HE TOLD ME “NO”!

Finally I had to get him out, it was time for treatments and bed. He was not happy at all to get out, but I asked him if he wanted to play again tomorrow and he said “yeah”. I got him out, dried him off, and we proceeded with his bedtime treatments and routine. As I did trach care I thought about how crazy I must seem to people viewing my snapchat to be SO excited about Zeke’s first time in the shower. Zeke is almost 4 years old, and here I am losing my mind over a shower, but for him it is SO much more than that. This is a battle that I didn’t know if we would ever win, and Zeke just decided on his own tonight that he was no longer going to be afraid of the water. He decided on his own that fear is a liar. He LOVED the water tonight, and to me that was nothing short of a miracle. Tonight I saw God in an almost 4 year old telling me “no” when I asked if he was ready to get out of the shower. God is SO good, and his goodness looks different for different people. Tonight His goodness was seen in that sweet simple shower for my son.