The Irony of Being Too Busy With Medical Needs to Discuss the Healthcare Bill

My wife, Melissa, brought up an interesting piece of irony to me last night.

Having a daughter with a newly discovered genetic disorder, we had numerous friends in our rare disease community calling their legislators all day yesterday to discuss the House healthcare bill. Ordinarily, we would have been a part of that group. Instead, our day was spent like this:

Our daughter, Adair, woke up and there was something that just seemed off, so Mel tested her blood sugar. It was 56, which is not good. We got fast-acting sugars into her to bring it up rapidly. One of the major risks of low blood sugar is having a seizure, which is a fairly serious consequence of managing her hypoglycemia.

Adair is having major hip surgery on Monday, so it was all hands on deck because of this blood sugar incident. We were on the phone with the endocrinologist on-call at the hospital before office hours. We spoke with Adair’s normal endocrinologist during regular hours. We spoke with urology. We spoke with the special needs clinic. We spoke with the pre-op staff…all because of low blood sugar and surgery.

We spent a ton of time trying to get a brief dental exam scheduled during her surgery as well. When your special child goes under general anesthesia, you try to schedule as many things as is safe. We already have ENT scheduled to come in and redo her ear tubes. After many phone calls and texts were made, we are still unsure if it will happen. Thankfully, a dear friend is working on it!

We spent a boatload of time talking to Special Needs about having something called a care conference. We want to get cardiology, endocrinology, genetics, dental, infectious disease, urology and ENT all in a room together to discuss Adair. Her genetic disorder creates a bunch of complications with how these disciplines interact…and so does her hypoglycemia…and so do a few of her other complications.

We are also trying to mentally manage the fact that our daughter is having her 13th surgery in two and a half years. She almost died during her last open heart surgery a few months ago, so this one is especially weighing on our hearts and minds. That, coupled with the fact that she will be in a cast from her armpits to her ankles for six to eight weeks post-op, is a mental and physical burden which is sometimes difficult to bear.

The day was just so incredibly ironic. There was this vote that dramatically impacts our lives if it ultimately becomes law, and we didn’t have a moment in our day to contact our legislators about it due to Adair’s special needs. This is what it’s sometimes like having a special family member or being a person with special needs. Their immediate needs often take precedence, and all other aspects of life get put on hold.

We are some of the fortunate ones too. My wife is able to stay home with Adair, and my job is flexible enough that I can help on days like yesterday. But what happens to the families that don’t have that flexibility?

My wife and I are very thankful that no matter what happens here, though, God made a way for us to be with him in perfect harmony in heaven. Faith in that fact is what gets us through.

Some days are tough. Yesterday was one of those days. Adair’s surgery day will be another one of those days. The subsequent six to eight weeks of a spica cast will have some of those tough days, but our savior is with us every step of the way. He knows what we are going through, and I’m so thankful for that.

God bless you all for reading this, and special blessings to all of you other extra special families!

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