One of the greatest gifts I have received from having a child with developmental and physical delays is that I no longer take things for granted. During my pregnancy with Justin, I devoured the What to Expect books like Crème Brûlée. They were treasured maps and guides. When Justin not only met but exceeded what I was to expect, I was full of pride. As though his development were a direct reflection of me. In my naivety, I believed all my children would ace every developmental benchmark. I took for granted that Justin was neurotypical.
Emily came along and forced me to throw out the manuals and books. She did not meet any of the what-to-expect milestones. Years went by before she did. I recently shared that Emily finally learned to drink from a new cup at twenty-two. This week, while doing some new year cleaning, I found a Polaroid of Emily drinking from her cup for the first time. It reminded me that Emily has always done things on her timeline and in her own way.
We take for granted that our kids will walk, talk, read, and write. We believe they will grow into adulthood and make their own decisions. They will live independently. Until Emily was born, this was my belief. Emily has opened my eyes and shown me that each human has a unique path and route to travel, and sometimes there aren’t any books that can help you.
When most adults need routine medical checkups and lab work, it is not a big deal. We pull up our sleeves for the blood draw. We follow directions as we are probed and prodded to get valuable information that will give us information to improve the quality of our lives. If we are low on Vitamin D, we know we need more sun and maybe a supplement. When our iron levels are low, it directs our providers to the next step in our care to optimal health. We take for granted how lucky we are to be able to access this vital health data. At least, I know, I did.
I cannot remember the last time Emily had routine labs. Most of the time, even getting Emily’s blood pressure is unsuccessful. It has been years since she has been weighed at a medical appointment because not a single doctor’s office has a scale for wheelchairs that is easily accessible. When she was young, mom and Emily both got weighed. I weighed first and then held Emily and got back on the scale. The nurse then did the math. I can no longer do this. (Now Todd or Justin perform this task at home.) As she has aged, her physical and cognitive delays have compromised the quality of medical care Emily receives.
In December, we found out Emily has a wisdom tooth coming in and that it will create issues. Before the procedure is scheduled, Emily will need lab work. I was on the phone with her primary care office and began to cry as I requested a physical and blood work. The nurse was caring and empathetic. She asked follow-up questions. I explained that the labs Dr. Hertel had ordered at her last physical exam never happened. The technicians were unable to get a blood draw. In my meltdown, I expressed that there has to be a better way and that my daughter was not getting the preventative care she deserved. And, if that wasn’t enough I added that I was failing as her mom. (Ah, the poor nurse.) Nancy made the appointment for the physical exam and kindly jotted down notes to relay to the doctor.
Later that day, Nancy called to inform me the doctor was going to put in authorization for a mobile service to do the blood draw for the lab orders at home. I was relieved but also angry. I had to have a mini-breakdown on the phone before anyone offered an alternative.
The obstacles to providing Emily with routine medical care are challenging. I prepared myself for barriers to entry for Emily with her delays and inability to walk, but I never expected her medical care to have some of the highest ones. I will fight to continue monitoring her health in any way she will tolerate and allow. I will fight for changes to make it easier for her (and me too). I am grateful that I can fight for her, but disappointed that I must do it. Maybe one day the inequities in her care compared to a neurotypical adult will not exist. I hope that day comes in my lifetime. If it does, you can bet that I won’t take it for granted.
Conversation for Change 