Celebrating a Milestone Birthday When Your Child Has a Rare Disease

We have been talking about my son’s upcoming 5th birthday lately. He has been so very excited about planning for it, but for me it has brought some mixed emotions.

When I first looked up MPS and Hurler’s syndrome, the first thing that slapped me in the face was a five to seven year life expectancy. At the time I couldn’t imagine my son dying before he really lived. That was one of many things that pushed us to try the bone marrow transplant (BMT) treatment: to give him the best chance at as long of a life as possible. Rationally I know that even three years ago those numbers were outdated. Rationally I know between his various treatments we have increased his chances at a longer and healthier (which seems weird to say given all the meds and stuff we are still on) life. I know MPS1 patients in their teens and even young adulthood. I have every reason to hope and believe that my son will be in that category and yet…. him turning 5 is messing with my head and bringing me a flood of emotions.

Every day I struggle with holding him close and savoring every moment and yet living life as though he is not sick. Wanting to cuddle on the couch for hours and yet needing to get up and clean or take care of his siblings. Wanting to instill good qualities and good routines and wanting to treat him to things while I can. Wanting to expect him to follow directions and wait his turn and wanting to give in to him because he is still here. Expecting him to have a long life knowing that any surgery or sickness could take him from us.

It is a struggle living in hope, but knowing that reality can be harsh. It is celebrating all the small milestones and being grateful for where we are and yet struggling with jealousy (as well as happiness) when your friends and their MPS kids don’t appear to have quite the long bumpy road as you and your son. It is watching other MPS kids not make it through transplant or to suddenly gain their angel wings and your heart breaking for them and their families, but also being grateful that it isn’t you and your family. Every day there are battles that I am both feeling and undertaking when it comes to my son, but also when it comes to his brothers. Trying to meet each child where they are and with what they need while helping them understand their oldest brother isn’t there yet. These are not unique struggles to me and my family, but they are often overlooked or forgotten about if you’re not in them every moment of every day.

Thanks to COVID we have been hard locked down for over 300 days to protect him. I know the toll it is having on him, on his brothers, on my husband and I and on our family. I struggle with protecting him from COVID and letting him live and enjoy life while he can. There are no easy answers and we won’t know if we made the right or wrong choices until after the fact. As this birthday approaches I am very aware that he has only been able to celebrate with all of his family around him two times since he has been born. I realize we don’t know where his path will lead or where it will end (or anyone’s path for that matter).

Whether it is due to being in lockdown for almost 10 months, the end of one year and the start of another or just that five to seven year life expectancy ringing in my ears, for right now my son turning 5 is hitting me. with all the emotions and all the feelings, and for this moment those feeling and emotions are heavy. The reality of our day to day life and the fears and worries and stressor of a kid with MPS are heavy. I know for those of you still reading this it is a lot to hear and possibly process. I know because I live it every day. And for now the heavy is loudest but soon the hope and optimism will be louder. My gift to myself in all of this is that my optimism and positivity always end up shining through.

Who know turning 5 would be so….emotional?