Life has been moving right along around here. Zack attended his second full week of school, missing only part of one day for a doctor appointment. We could get used to this.
Our new prolapsed stoma has been giving us some trouble and being a real killjoy. Our GI doctor assured us that prolapsed stomas are usually no big deal, but had us call the ostomy nurses and get their recommendations. On Wednesday evening, Zack had an incredibly tough night. His stoma was pretty swollen and he was in a LOT of pain. He wanted to go home from Wednesday night church. Um, they have snacks and play games and do crafts and have FUN. Zack couldn’t walk right and was crying, so home we went. I was going to take his wafer off and check things out, but he would not let me touch him. He took off his clothes and curled up in a ball on the floor, asked for pain meds and moaned. I was ready to take him to the hospital, but he insisted he did not need to go.
You may be asking why I took the word of a six-year-old. Well, this child has told us every time he has needed to be admitted. He can tell you when he needs an IV or when he needs to go to 3 West (the name of his children’s ward). When he said he did not need to go in and did not have a fever or vomiting or any of the other danger signs, I believed him. BUT you would also be right if you thought I watched him like a hawk and didn’t get much sleep.
The next morning, the ostomy nurses paged his surgeon and he wanted him seen. The surgeon was not in the building so we saw a new guy. Zack’s stoma always recedes overnight and in the morning it looked great. He didn’t want breakfast and was a little on the quiet side, so just to be safe we went in….it was the most frustrating doctor visit ever. Z did not behave. His stoma looked fine. I showed them the photos I had taken the night before, they were impressive, but Zack was fine at that moment. I am grateful that he felt better then, but he does not feel better today. His stoma has prolapsed every day since. I think this is normal. The pain is not normal.
I haven’t written on the blog because I have not been feeling cheery. I have been feeling frustrated. Z’s GI doctor feels like Z is on the mend and just needs time for his body to mature and his intestines to shrink and all will be well. I agreed with him for a time because that really sounds great, but something is not right. My child should not be in this much pain every day. Today we went out for lunch after church and as he ate I could see the color draining from his face. He began groaning about his stomach hurting and needing Motrin. After he had some Motrin and some quiet time, he began to feel better. His stoma is still pretty impressive, though.
Could it be a food he is eating? Could his Imodium which thickens his output cause things to slow enough to hurt? Is there some strange, unidentified thing messing with his intestines? We don’t know, but something does not feel right. Luckily, all of our doctors have encouraged us to get second opinions. We just really hoped they would be able to figure Z out without us having to go elsewhere. It appears that the time has come to investigate this possibility for real. We will meet with Zack’s doctors again soon and discuss our options.
As we have walked through Zack’s life, I have tried very hard to be positive. I have tried to talk not only about the hard stuff, but have also tried to engage neighbors and friends in other topics. I’m sure I’m not always fun, but I try hard not to be a negative person. I have some wonderful neighbors and friends who have been very encouraging and I am so thankful for that. Our new neighborhood has been very welcoming and has embraced Zack in so many ways. I can’t think of a better place to live and I’m excited he gets to grow up here. At the same time, my life feels so different from all of theirs…I told you I was having a pity party.
I find myself thinking about all of the appointments Zack has every week – PT, OT, speech. I think about all the doctors appointments we have – although they are decreasing. I think about the IEP meetings and things I need to learn in this new Special Education world. Sometimes it is just plain overwhelming. I often feel as though I am just waiting for the next crisis instead of enjoying today. I’ve decided I have had enough of that mess. It’s time to refocus.
Last week I was fortunate enough to spend time with a new friend who has a daughter with special needs as well. We were able to compare stories and frustrations and just be real about how things can be hard. And that is when I realized what I have been missing. Having another mom to talk to who gets this life of mine. I realized that I can reach out to others. There are two other families at church who have children with special needs. I’m just getting to know them, but I realized I’m not really alone. I’m excited to be able to share my struggles with them and to listen to their struggles and to be a support. I’m excited to have people to talk to about the hard daily struggles that just don’t really make sense unless you are living them.
Zack’s struggles are a big part of my life, but not the only thing I want to talk about. I realized that without having someone to talk to about his struggles, I haven’t been able to be a good neighbor or friend to those around me. I have needed a safe place to vent so that I can leave the issues for a few minutes and focus on other things like Book Club and volunteering in my kids schools and hanging out with the neighbors without having Zack be my only topic of conversation.
I’m actually happy that I was able to have a week-long pity party. It helped me sort some things out. It helped me realize that if this is my new normal, I’m smart enough not to let it consume me. We still have a long road ahead of us, but I’m so thankful that I have a spring back in my step, a plan to take me forward and great friends, neighbors and family members to walk alongside of me.