(posted July 7, 2021)
“Strength grows in the moments when you think you can’t go on but you keep going anyway”-Unknown
If I have learned anything about life it’s that nobody ever promised that it would be easy but I do think that our struggles in life are what builds character, it makes us dig deep into ourselves and once we finally see the light at the end of the tunnel we can then enjoy the taste of success even greater knowing that we didn’t give up on our goals and dreams. That we ultimately believed in ourselves that we could achieve what we originally set out to do. Andy was my dream. He completely changed everything about my view on the world, my parenting style, my level of patience, how to advocate, have faith and how to persevere …for him…to make his quality of life better.
Andy was born August 11, 2006, weighing 6 lbs, 4 ounces in Cleveland, Ohio but his story begins before that when I was still ever-growing pregnant with him. At a routine doctor visit, it was discovered early on that Andy’s limbs were not measuring in the “average” range and that there was a high probability that he might have Achondroplasia or Downs Syndrome.
The best advice at that time was to have an amniocentesis done to better prepare us if he had one of these genetic disorders and to get in front of any potential health problems he would have.
The results were inconclusive but Andy didn’t have Downs Syndrome. The standard test did not include 22q and it was never mentioned to us to test for it. So we rolled the dice and decided to just take everything as it came to us and when Andy finally arrived we were thrilled when our pediatrician did not see anything wrong with his proportions.
Andy was a very happy and healthy baby and loved his big brother, Jack who was six at the time. He hit all of his milestones on time but slowly started falling off the growth chart as time rolled along. Andy was a relatively healthy baby and wasn’t overly fussy but at the eighteen-months, he developed an ear infection. It wasn’t anything noteworthy and we were seasoned parents in this department and had already endured tubes with our older son at this stage. Unfortunately, routine tubes in the ears lead one day to an urgent call from Andy’s daycare that he was sick. I rushed to pick him up only to find that his ear was draining in the color of gangrene which I knew couldn’t be good. One ENT led to a second and then a third opinion and multiple hospitals after discovering that Andy had a perforated eardrum. The perforation was so large that our focus changed from having tubes put in his ears to just letting his ear drain normally since the eardrum wasn’t intact. As a mother, I searched through every local magazine and talked to other parents to get references trying to get a leg up on how to improve Andy’s quality of life. Finally, I came across a pediatric ENT at the Cleveland Clinic that was a godsend. We still didn’t know what 22q was or how this could have played a part in Andy’s 60% hearing loss. This doctor tried repairing Andy’s eardrum with foam to see if it would generate new cells to allow the body to repair the eardrum along with a longer tube in his ear. That surgery didn’t work.
In the meantime, Andy was falling more behind in his growth, was three or four years old, and wasn’t talking. We were trying speech therapy but Andy was also becoming more aggressive and having a hard time listening and sitting still. We decided to have Andy tested for ADHD and did a clinical trial for medication to see what medication worked the best for him.
Again, as parents, we were fighting symptoms but we didn’t know what the bigger picture was or anything about 22q.
We took Andy for a routine eye exam and since he couldn’t hear in his left ear his language skills were way behind so he couldn’t articulate what he was seeing so it was hard to gauge what exactly he could see. Over the years Andy’s glasses have gone from what resembled “coke bottles” to a reasonable lens that was able to correct the onset of a lazy eye.
Somewhere during this time frame of being on ADHD medication, coke bottle glasses, hearing loss, and lagging language skills; Andy had a sleep study that showed that his slow growth might be attributed to a loss of oxygen when he was sleeping. Somehow Andy would stop breathing while he was sleeping and it was recommended that his adenoids and tonsils be removed to alleviate this problem.
This surgery was a big one. Not only were they going to remove his adenoids and tonsils and draw blood to check other potential issues but another ear surgery was going to be done. Andy had these pits on his ears that would drain, these would need to be cauterized at the root. In addition, a skin graph would be taken to patch his eardrum once and for all. I can’t even begin to tell you how traumatic these experiences were for Andy and how hard it was on us as parents. Andy became a pro at it though and he preferred to be put out completely than have something happen while he was awake and have anxiety about it. We had a routine for the days of surgery. We tried to be upfront with him and talk to him about what was going to happen but in the end, he really didn’t want to be given much notice… it gave him too much anxiety thinking about it. So I would pack a special stuffed animal for Andy, a monkey that his great grandma had bought him. He knew if we were at the hospital and the monkey was in there that he was going to have surgery. The hospital was nice enough to let Andy keep the monkey with him throughout the process. It is heartbreaking as a parent to see your small child in a hospital gown, a diaper with his monkey. Once Andy was prepped for surgery and the operating room was ready I would carry him into the operating room and the staff would let me sing him to sleep while he went under. I insisted to be the last person he would see when he would go into surgery and the first person he would see when he woke up. The surgery was a success for the most part and Andy became acclimated to a hearing aid.
Andy’s next hurdle was a Kindergarten screening. I held my breath as to what the results would be, after all the struggles, I tried to convince myself that everything would be ok, but then I was crushed to be told he was not ready for kindergarten. Thankfully, we were able to put him in a school that was more fitting for him with a child psychologist and Kindergarten teacher that to this day is our favorite. At this time Andy was genetically tested and we found out that he had 22q Duplication. Once we were able to educate ourselves on 22q we were able to see that all of his medical issues along the way made sense.
Since Andy’s diagnosis, he has taken swimming lessons, played on a baseball team, traveled to various historical sites across the country, visited Lego Land in Florida, and is currently getting ready to start high school in the fall. He loves LEGOs, Star Wars, Marvel movies, and learning about history. In high school, he plans on taking woodshop class and his long-term goal is to live independently in his own home.
Andy has been faced with many obstacles in his life, just like the rest of us but he greets the world with love, kindness, determination, laughter, and moxie. I can honestly say that everyone that has met Andy has fallen in love with Andy. He is a quick-witted, funny, compassionate young man. He takes pride in himself and in taking care of himself. He loves to help people and is especially attentive to those that don’t have a voice of their own and he is willing to advocate for them. I am truly blessed to have Andy in my life and I am so excited to see where life takes him and that is all that a mother could ask for.