Waiting

Waiting is hard. For your entire life you learn little lessons in patience. They build up and are supposed to help strengthen you. As a child you eagerly await Christmas morning. As a teen you eagerly await the day you can get your driver’s license (unless you were like me and pushed it off as long as possible). As an adult you wait for all kinds of things.

I am finding all of the lessons in waiting that I experienced to be completely useless. We have waited so much with figuring out answers for Alexander. The more I end up having to wait, the less patience I find myself having.

This week we received the rest of his blood work. Alas, the waiting for that is over. Everything else came back negative for IgE allergies. I was definitely overjoyed about that. We are still not giving him bananas or avocado as he has had FPIES reactions to those. As a precaution we are avoiding kiwi, because kiwi is closely related to both of those foods. Eventually in a controlled setting we will test for them, but that time is not now.

This week we have had a bit of a setback with his bowel movements. His diarrhea has returned. I have been monitoring him all week. There have been worse diapers and better diapers. Today has been worse all around. We are up to 4. One was on the floor while he was airing out because the rash has also returned. After the second diaper today, but two of many this whole week, I made the decision to call and schedule an appointment with a Pediatric GI. I need to get some kind of answer in order to help him. Unfortunately, there are no appointments until nearly the end of April. More waiting.

After the 3rd diaper I decided to call his pediatrician and update her on the return of the diarrhea this week. I know she is out on Thursdays, but she is usually in on Fridays, so I intended on leaving a message for her. She will not be back until Tuesday. More waiting.

Waiting is not getting easier. It gets exponentially difficult. I feel overwhelmed with helplessness because I just want to give him a life that is as healthy as possible. I want him to be as healthy as possible. I don’t want him to get rash after rash from loose diaper after loose diaper. I feel a tightening in my chest at any given moment in a bad digestive day. I sigh a lot. I just stare at him and feel my heart breaking for his tiny little body. He has grown to detest diaper changes. I ache for him when he freaks out over that. I have started to let him watch videos on my phone in order to calm him for every single diaper change, even regular pee ones. He just freaks out. Today, that has not helped. His aversion to it is so strong, knowing he has these BMs, that he loses his mind.

I have Jackson, my helper during the days. He is quick to act if I need help with something. Today it was cream while I wrestled a screaming Alex down after he pooped on the floor. A 5 year old shouldn’t have to be my saving grace during a moment like this. My poor sweet oldest child. The other day at his school his teacher asked if he wanted breakfast when arrived. He had eaten at home but said yes. She mentioned there were bananas. Then he said “just don’t give the bananas to my brother. They make him puke.” It is so wonderful that he is so caring but it also breaks my heart that we are even in a situation that we had to drill that into him. He is amazing. His heart is huge. I am definitely way too cranky and short with him way too often. I keep my conversation open, explaining why I am sometimes so stressed out, especially on bad digestive days. I tell him how hard it can be and how I am feeling. I listen to what he has to say about he feels about it. We hug.

Sometimes after naps, Alex wakes up hysterical. Inconsolable for at least 30 minutes, sometimes longer. Nothing can settle him down. There were at least 2 days this week like that. Today and yesterday were better. Those hysterical afternoons are hard. I hate not being able to soothe whatever is clearly causing him distress. More waiting. Waiting for him to ride it out and I try to hold him and comfort him and offer him whatever he needs.

I hate waiting. For once, it is not from our instant gratification society. For me, it is because after 17 months of bumps in the road, I want answers for my baby. I am tired of waiting. I want to help him. I want to have the proper tools to help him. I don’t want to just keep him comfortable and his butt slathered in cream. But it seems for now, waiting is in my foreseeable future. I will be waiting until Tuesday. I will be waiting until April 21st. I will be waiting for his next diaper, anxious to see if it is diarrhea or not. I will be waiting to see if he wakes up happy or hysterical from his naps. Waiting for my answers.