In the summer of 2016 we were busy with road trips, days at the pool, evenings around the fire pit with friends, festivals, and all the rest that summer had to offer. But one August morning I took our three-year-old son to the pediatrician for some peculiar bruising, and by that night he was admitted to the hospital receiving blood and platelet transfusions. The little boy who days before ran around with his friends at our church picnic was now in a hospital bed, in isolation, because he had no immune system. Our son was diagnosed with Severe Aplastic Anemia, a rare form of bone marrow failure, and was fighting for his life.
The coming months brought some of the scariest moments of our lives but we did come away with some valuable lessons for anyone facing a serious or life-threatening diagnosis for their children.
1. Nobody is the [fill in the blank mom] until their child is diagnosed.
At first it feels like you’re in that dream where you’re taking a test for a class you’ve never been to, but you will catch on pretty quickly as a newly minted cancer mom, autism mom, etc. Every mother who helps her child through a diagnosis gets a crash course in that disease and becomes an expert. You will advocate for your child as nobody else can, and your inner mama-bear will show up when required. This brings me to my next point …
2. Nobody is strong enough to handle this—until it happens to your child.
Although all moms who care for sick or special needs kids are extraordinary, there was a time before her child’s birth or diagnosis when she wasn’t strong enough to handle it either. However, a mother’s heart is a special place where strength and resolve will grow in direct proportion to the needs of her child. Medical stuff has always made me queasy (even a wiggly baby tooth is too much). Then my son needed daily injections to stimulate his immune system so that’s just what I did, albeit sometimes through tears. While you’ll find a steely resolve you never knew you had, remember —
3. You will have days where you fall apart, and that’s okay.
Many people see a mom doing amazing things for her child and will comment on how “strong” she is. Indeed, she is surpassing anything else she has ever had to do and may put on a decent front. However, in the privacy of her home or the quiet of the night, she falls apart. When my son was getting worse, there were many hours of the day I couldn’t do anything except lie on the couch with him. The grief and fear couldn’t be pushed aside, but rather had to wash over me so I could come safely to the other side and be there for my kids. Giving myself permission to fall apart allowed me to ultimately come to terms with what was happening, so I could do what needed to be done for my son and his sisters. And for those times when I couldn’t …
4. It’s okay to let others help in every way they offer.
Many people near and far started to reach out almost immediately after my son was hospitalized for the first time. At first I was reluctant to accept help, but those closest to us gently coaxed us to let them do all sorts of things for our family. We had people dropping off meals, treats, presents, taking our other kids on outings, and even school shoe shopping. MOMS Club International organized a blood drive, marrow registry drive and benefit on behalf of my son. My sweet group of friends hired a cleaning service for us so everything would be sanitized for my immunocompromised kiddo. It was amazing how good people were to us, and accepting that help was the only way we could’ve gotten through it all. When people offer to help it’s because they really want to be there, so just say yes!
These are all valuable lessons, but possibly the most helpful thing I learned is this …
5. It will not be as bad as you imagined, and everything will be okay … someday.
I don’t mean that you will never experience setbacks or tragedy, and for some of us, our child will never recover. What I mean is that you will eventually settle into a new routine and life will sort of feel normal again, even if it looks nothing like your old life. Furthermore, not every minute of every day will be hell for your child, and you will see her be happy again, even if in brief, fleeting moments. The worst moments don’t last forever either. Your sick child will have times where he is sleeping peacefully, you will see something funny and laugh together as a family, or some angel will sponsor an experience for your family and you will forget for a day that anything bad can happen.
While being a mom of a sick or special needs child is never easy, there are many of us out here on the journey as well who have trod where you are headed. There is no road map because everyone’s path is unique, but we are all bound by this universal fact—a mother’s love can bring a family through anything.