The Limo Ride

At some point during my son’s first year of life my husband and I stood blurry eyed looking out the window at Riley Hospital. We were watching a family leave the hospital in a limo. That family was celebrating the fact that their child was well and that they would not be back. My husband looked at me and said, “let's plan to do that”. We agreed that leaving the hospital without all the stress, fear, and heartache would be “limo ride worthy.”

I tell this story because we never had that limo ride. For our family, the journey to answers and understanding of what turned out to be a lifelong disability was long and painful. In those early years, the doctors were stymied; alternatively hopeful that a treatment or surgery might solve the problem, and pessimistic with doom filled predictions of a very short life. I envied the family in the NICU next to me; their baby had Down Syndrome. They knew what they were dealing with, had a bag full or handouts, and referrals to support groups. I had a mystery. As we bounced around for years without a diagnosis of an underlying syndrome, it seemed impossible to plan for the future, to know what to expect; and it often seemed like life had become a series of medical crises without resolution. Some answers did eventually come by the time my son was in kindergarten: we had a syndrome name and a clear understanding that we were in it for the long haul—our limo was not coming and we had gotten over waiting for it sometime in the preceding years.

This journey did “teach me” and I hope some other family “wandering to a diagnosis” might benefit from my road:

• Your gut is right I have never regretted the nights spent sleeping on the floors of hospitals when I knew something was not quite right (I have prevented the wrong meds or the wrong test and I have learned about what works best for my child

• HOPE is your right I know that people have wondered about my family's “denial issue” from time to time. But my “terminally ill son” is alive today; and his college plans are just as realistic as all of his peers

• Don’t let a lack of diagnosis stop you from applying for things We waited to “know for sure” and paid for our mistake with extra time on waiting lists

• Don’t let predictions of a shortened life span prevent you from accessing services I remember one of my first moments of empowerment—I refused to put off First Steps any longer even though our pediatrician indicated that my son would not live long enough to reap its benefits

• Learn from ANY group Not having a clear diagnosis forced me to interact with lots of different disability and medical advocates to piece together the information my family needed. Today I find this to have provided me a HUGE base of knowledge and connections. I am even thankful that I had to go beyond one support group.
  

If you are among the lucky ones whose time dealing with a child’s serious medical concern is short and resolved, you should celebrate-take the limo ride! But please also remember what you learned from your experience. I bet your new perspective can help to make the road smoother for others.