What It's Like to Watch Your Grandchild Live With a Rare Disease

It happened again — another line infection. As we walked into Avery’s hospital room we watched as our son held down our beautiful and beautifully rare grandson as the phlebotomist tried her hardest to draw blood. Our son, Josh, knew blood was not going to be taken that day or any day. It had to come from the Broviac itself. Avery has too much scar tissue to have blood drawn through a vein in his arm. But, Josh did what they wanted until Avery’s screams became just too much. Just like Josh wanted, the blood was taken from the line. We’ve seen our son go from business owner to caregiver, to a really great father in the world.

Like a broken Japanese vase, our hearts are filled with gold, holding the broken parts together for our son and our grandson. Our son’s vase is broken too, but the gold that holds his together is solid and true. We watch as he gives Avery the most normal of lives. We watch as they run errands together, play puzzles and games and pretend to be various Thomas and Friends train persona. Then night comes, and the enormity of microvillus inclusion disease rears its head. TPN, lipids, SMOF, numerous medications, bolus feeds, leaks and messes. Let’s not forget the Narcan for all of the liver issues associated with TPN, the growth hormone shots and all of the vitamins. That is what we see, but we’re sure there is more. The fear of sepsis and total liver failure is real. The worry about getting that phone call saying the transplant team has found organs for a potential three organ transplant. No part of it comes easy.

Our vase is not reconstructed quite as well. While we normalize our visits with the little boy who is our inspiration for all we do, we have the same worries with one added and huge worry — our own son. The financial hardships of rare disease are overwhelming and while we help the best we can, we cannot fix it. The fear and worry our son experiences daily, we cannot take away. When Avery has to have a particularly difficult procedure, we cannot take our son’s or our grandson’s fear and pain away.

So our hearts are filled with gold, but we are the grandparents, not the parents. We are a step removed. We are there for our son and grandson, emotionally, physically, and financially when we can. In truth, we wish there was someone there for us, at times. We fall apart too, but try not to show it to the two who need our heart the most. We don’t just worry about one; we worry about two. That is OK. We wish we could take all of the pain and fear away from our son and his child, but we can’t, and it feels like a failure. Our gold is not as strong as we would like. We cannot possibly do what is impossible to do.

With each crisis, we pick up the pieces and mend our hearts preparing for the next unfixable moment.

Avery has taught us to live life just like he does. He lives to the fullest enjoying each new wonderment with the awe only a 4-year-old can show. He makes us laugh and takes our hands to play hide and seek or see the ducks down at the pond. What he has really taught us is that the gold holding our hearts together is really hope, and there is plenty of it. That is what we must remember and hold tight. Vases can be fixed. There are a few scars along the way, but they hold up and can hold onto a bright future.

In Japan, they often mend vases with gold to show their beauty and history. We do the same with our hearts.