Ethan had been crying throughout another 2 hours of homework event for the 3rd time that week. Dave and I sat him down to talk through how it is tough for him but that is why he has to try harder than other kiddos. Ethan looked up at us through tears and said "I'm stupid. I'm too far behind. I'll never catch up. Isn't there a medicine that can help me the way Logan's medicine helps him?" My heart broke. Dave and I were trying so hard to avoid medication, to teach him coping skills to enable him to work through his diagnosis, but hearing him call out for help in such a mature way we both felt we needed to respect his request and try to find the right medication.
Over the course of the next 2 months we tried 3 common ADHD medicines. While they enabled Ethan to focus in a way he had never been able to do before they caused excruciating joint pain to the point he could not walk. We took him to a rheumatologist who diagnosed him with hyper-mobility syndrome, a condition that causes his joints to hyper extend, insomnia, and coordination of basic physical activities like running to be very difficult. The stimulants in these ADHD medications exacerbated his condition causing swelling and inflammation in every joint of his body, including his spine. This was uncovered at the beginning of April. With Logan's first surgery occurring at the end of April Dave and I sat with Ethan and requested his permission to allow the rest of 3rd grade to happen without medication. We asked him to do his best and allow the family to focus on Logan for the next few months with the understanding that his condition is just as important to us as Logan's. Ethan agreed we could try medication again after Logan's transplant. As promised, in the last two weeks we have uncovered a new ADHD medicine that does not seem to impact Ethan's joints and does give him additional frontal lobe control. He requests his medicine even on the weekends so that he can "hear what we are saying without asking 'what'?".
Between PKD and ADHD I have often felt saddened by the thought of my children's lives being tougher than others. This brings me back to my epiphany. I realized this morning that my job as a parent is NOT to keep them from having struggles or protect them from having bad things happen to them. My job is to teach them how to dig deep and find their inner strength to overcome these struggles they are going to experience throughout their life. As a parent I need to teach them how to cherish truly happy moments because they will know the converse of hardship and pain and struggle and to provide them the tools to laugh even in those hard times because life is too short for self pity. This concept, as easy as it is for me to grasp now, has been evasive for the last 5 years. Maybe it is seeing my children grow into boys versus little kids that has enabled me to take on this new idea so seamlessly. A child at 2 years old versus 7 or 9 years old is drastically different in their mental, emotional, and physical capabilities. Or maybe the idea has presented itself to me because I have grown over the last 5 years as well and know that I am capable of providing my children more than just a mama bear protector.
This new idea does not preclude the desire as a parent to wish easier life paths for my children, but it does remind me that hard times are presented to everyone throughout their life. I owe it to my kids to show them what they are made of, not continuously show them what I am made of.
The family as a whole is doing well. Logan is growing stronger every day and while we are still on 11 medications the dosage continues to decrease. He is gaining height and weight and does not look like the same child from 3 months ago. Dave has quit his job so that we can manage all of the appointments between both kiddos and I honestly believe is enjoying a summer with his boys. Overall, we are finding a new rhythm to our new norm and are certainly cherishing these happy times.
Thanks for supporting our family. We couldn't have gotten this far without you.
Ann & Dave
