Dec 19, 2016
From the start Cody has had to fight to be here. He was born at 36 weeks. That was as long as I could carry him. Just a little guy at 5 lb. 1/2 oz. because of the meds I had to take for my crazy blood pressure. Two days after he was born, his bowel perforated due to long segment Hirschsprung's Disease. His large intestine was there, it just didn't function. (Another story for another day...needless to say, full of it's own miracles and a whole lot of wonderful people who have helped my boy. He is meant to be here even though his path has been a little bumpy.)
His health for the first couple years was a roller coaster of running to the hospital. Sometimes it takes a whole lot of physio just to do "normal" kid things. We made it fun. We celebrated his own special milestones like hopping on one foot. People might have thought us weird parents for cheering for a 5 year old who was swinging on the playground and smiling instead of being terrified. It meant he had the abdominal strength to control his torso with the motion of the swing. I have to believe anyone watching would be cheering too if they knew his story. He had abdominal surgery at 6 months and had to learn to sit again.
He's had digestive issues and eating issues. We still struggle with getting him to eat these days, but for other reasons. His meds don't help his appetite.
A year ago near the end of September, he started refusing to stand on his feet because they hurt. My little cross-country runner was crawling across the floor at home. That was when the arthritis started, but we didn't know it until a couple months later and some medical tests later. I took a lot of flack from people saying he just wanted to stay home from school, that this was life and for him, it was going to be hard, but he needed to be in class. He took a lot of flack for not wanting to do things. As a mom, I knew there was something more going on with my boy. I am a gentle person, some well meaning people suggested that I should be tougher with him.
This is where I will add, they did it in love, but sometimes we hurt those we love even with the best of intentions. I am a patient person, but it didn't mean that the well meaning suggestions didn't sting a bit. I am a proud mother of 2 kids and my children are my treasure. I am not a pushover. I am doing the best I can with my boy and I live with him. I see the pain he goes through and I see the little boy antics. He is like any other child trying to get away with things, seeing how far he can push. I have walked with him through the tough stuff and been there when there is nothing more to do than hold him and try to be a comfort when life hurts. All I trying to say here is all those of you blessed with healthy children, be gentle with your words and parental advice. Parenting a child with health issues whole other challenge.
My Cody loves cross country and he was so excited to run the Mickey Mile in Florida this January, he had just run a great cross country season at home before the arthritis hit and it hit hard. My husband and I debated whether we were going to let him participate in the Mile. This vacation we had to rent a wheelchair after the first day because the walking all day was too much. Cody insisted he could do it. He had done the mile the year before in a little over 9 minutes. This year though, after 200 metres, we had to walk. It was a struggle. He was crying and leaning on me for a good chunk of it. In that moment, the reality of his health and what had changed hit home. It took a few months because he is such a tough kid with all that he had faced before that. A volunteer asked him if he needed to stop. He didn't want to. It was heartbreaking for him. He didn't quit though, Cody and I crossed the finish line together. I was both extremely proud and sad for him. Cross-country is his favourite sport.
After our vacation, we have seen some wonderful doctors and with some meds, Cody was able to participate in cross-country this season and run his best season ever with the warm September we had. His goal was to come in 100th at regionals and he came in 81st. I got to watch both his races, bursting with joy and pride because I know his story. It was beautiful. Some days we can run and others we have to walk. And other days we wonder if we might have to find a new sport.
Since this fall and the return of the cold, his arthritis has flared up again. He stopped playing outside again. We're in the thick of battle. We have some good doctors and we've had to switch medicines and sometimes my boy has no energy. I see in him a different strength, a strength of spirit and I see a person of strong faith. He doesn't give up, even though some days he is too tired and nauseated to go to school. We're still in transition between medications and despite side effects, he has been able to play soccer with his friends at recess so here's to hoping this flare up will fade. We're learning how to work with his new "normal" right now. Part of Cody's path is finding creative new ways of getting things done with the energy level/joint issues he has that day. iPads are awesome and equal less printing. His hands get tired easily. He needs help carrying things because most things are too heavy for him to lift when he is sore and he's still learning to speak up when things hurt instead of struggling through.
Sometimes Cody amazes me with his perspective on life. With what he has gone through, there are little windows of light where he shares wisdom beyond his years. We have shared many special days of taking the lemons and making lemonade by reading books together, watching epic Lord of the Rings and StarWars marathons. We are both huge fans. I have made him an Obi Wan costume, a Legolas costume and a Finn/Poe jacket. He helps decide the details he wants. I love his quirks. It had to be the Legolas costume from the Hobbit movie because the jacket is better.
I am naturally a very strong, athletic person, but I am also cancer survivor, so I know to a certain extent what it means to feel utterly exhausted and weak. I have had to walk and not run. I had my times when I had to get up, eat breakfast and then go back to bed and sleep until noon so that my body could heal. At the same time, I knew if I rested, my strength would return. He is one of my driving forces when I run.
With my son, I see the fatigue and I can't tell him it will go away. Instead, I give him a hug, try to encourage him and pray with him for healing because I know his juvenile idiopathic arthritis could go into remission again. It may not and he will need heroic strength to get through. It may be something Cody walks through for the rest of his life like his surgically altered digestive tract and the issues that come with it. Either way, I am going to be there for him and he needs to move forward and make the best of life that he can. I see the moments when his health wears on him and weighs heavy, when he tries to hide his health issues from his friends because he doesn't want to seem weak in front of them. If only they could see what I see. Maybe, he will feel comfortable telling them soon. They're good kids, but they're kids. And this I leave up to Cody. He is dealing with it and he knows his teachers and I are there for him. Thank God for good teachers! His school has been great about his health.
Cody has a quiet internal strength. He is my 11 year old Superhero/Elf Warrior/Jedi. (The Force is strong in this one! Sorry, I couldn't help myself.) I write this today as much for myself as anyone out there reading this because it's better to let things out than hold them in. I am learning how to parent a child with JI Arthritis and it is a process too. God Bless!
No comments:
Post a Comment