Our Journey Toward Hope – A Story About Aidan

Aidan was such a sweet, carefree baby; until he wasn’t.  Around one year old, he developed bronchitis and pneumonia frequently, and no doctor could tell us why.  We were shuffled around from specialist to specialist and test to test until an ENT told us he was aspirating his formula, which was causing his pneumonia.  Even more worrisome, as if that was possible, was the size of his head, which was abnormally large.  Because our oldest had quite a large head, we had not been overly concerned. 

Eventually, after CAT scans and MRIs, we were sent to a Neurosurgeon, who told us Aidan had hydrocephalus – an abnormal buildup of fluid in the ventricles (cavities) deep within the brain.  This is a very rare neuro congenital disability that offers a bleak outcome.  We were devastated, unprepared, and becoming more hopeless by the second.  By two years old, our days were filled with appointments.  We saw many Pediatric specialists…Neurologist, Ophthalmologist, and Gastrointestinal specialist; and began addressing Aidan’s therapy needs. 

Running around exhausted and stressed didn’t improve our hopes; in fact, it seemed to make the dark pit in my stomach bigger.  While we were encouraged not to limit Aidan to his diagnosis, it was hard.  We were often left with the impression that he would never talk, walk, feed himself, read, or write.    Still, I fought to give him access to therapy and more specialists.  I didn’t do this because I was hopeful about his future.  I did this because I didn’t know what would happen if I didn’t, and I could not handle any more uncertainty in my life.  As illogical as this was, I kept packing the schedule to make it through the day.  I didn’t realize this yet, but I had become an angry person moving through life in survival mode.

When Aidan was almost four years old, a work colleague talked about his son with a disability, and I was eavesdropping.  I wanted to ask him if his family was as depressed and scared as mine, but I didn’t have to.  He turned and asked me how my son was doing and when my eyes welled with tears, he told me about Family Hope Foundation.  His family had found this amazing organization to be a source of solace and a truly comforting community, free from any judgment we often felt in the community. 

I was immediately astounded by the activities and scholarships for therapy they offered and promoted for families like mine.  I didn’t know Family Hope Foundation would become a constant light in our lives, impacting morale, fellowship, and resources.  I finally had a place where I could ask questions about life as a “special needs” family.  And, if the answers scared me, there were words of support and courage to follow, ALWAYS.  We were surrounded by a community that celebrated their loved ones and saw each bit of progress as success.  I finally let go of some of the distrust, discouragement, and despair I had been holding on to.  This shift toward hope changed me, and everyone around me felt it.  I started to see confidence in my courage, real (not fake) strength in my determination and resilience in our frustration.  Aidan’s progress began to reflect the shedding of my hopeless, angry skin.  He gained good momentum from a newfound appreciation for my ability to advocate for his needs.

When Aidan was six years old, we had an appointment with a new neurologist.  After he checked and rechecked my son’s scans, he looked at me with confusion and couldn’t believe the person whose brain he was looking at could walk or talk.  In fact, Aidan was climbing up on the chair the doctor was sitting in, chatting away about his new little sister.  This was the day my life and my perception of caring for a child with disabilities changed forever.  That doctor reminded me that my hopes and dreams for Aidan fueled my dedication to fighting for this amazing child’s best interests. 

That original shift toward hope had snowballed into a whole new mission.  We were learning to stop running toward a finish line and enjoy the little victories among the hurdles.  This race analogy is cliché, but it is true.  Focusing only on making a final destination doesn’t create more speed or endurance; it only results in missing the awesome stuff on the way, the stuff that feeds hope.  Hope keeps us going and growing out of survival mode.  Hope changes outcomes.

Aidan is 15 now.  He can do many things doctors said he wouldn’t.  His accomplishments are primarily due to his tenacity, but I will accept some credit for my hopeful advocacy.  AMB Movement Therapy has made the most significant difference in his abilities and the quality of his daily life and ours.  We have been so fortunate with the scholarships we have received from Family Hope Foundation.  Without them, we couldn’t afford to keep Aidan in this specialized type of physical therapy that is not covered by any insurance. 

Aidan continues to build on his many gains due to his work with ABM, and we see the progress daily.  Aidan walks, talks- a lot, feeds himself- a lot; and is growing in every direction and a thousand ways we never imagined.  The kid is funny.  He criticizes my driving, makes nuanced jokes, and uses sarcasm in context.  He doesn’t read independently, but his vocabulary is incredible and probably one of his most fun attributes.  He has a special bike he can pedal.  He dresses himself, usually with all his clothes right-side out and not backward.  He takes his meds without help except for reminding.  He takes out the trash, helps empty the dishwasher, and loves to carry heavy things for us. 

All of these things give me joy and hope for the future, one I couldn’t even imagine in a positive way a decade ago.