By SARAH TUFANO
Monday, November 12, 2018
We were new parents thrown into a world of endless doctors' appointments and procedures, endless decisions way outside of our expertise, and 24-hour gut-wrenching worry. We felt like we were drowning.
At the age of nine months, our son was diagnosed with a rare, life-threatening blood disorder.
Statistically, there was a good chance he would die from hemorrhage or infection at a young age, get lymphoma in his teens or 20s and, if he even made it to his adult years, they weren't sure what quality of life he'd have. The only cure was a bone marrow transplant, which meant chemotherapy followed by a transfusion of donor stem cells.
Some time during all of this, I was trying to figure out my identity as a new mom. I wanted so badly to fit in at my mother's group. To discuss diaper rash creams, homemade baby food recipes, fear over spiking fevers after vaccinations. To share in the communal worry over teething pain and sleep regression. I always felt on the outside looking in. The other moms would send me apologetic looks after venting. Like the mom who is stressed about her child undergoing general anesthesia for the first time because of the supposed adverse health effects. The way she catches my eye as if to say "sorry" because she knows my child has been sedated too many times to count. The mom who is worried about her child needing glasses and the social stigma it might carry, and how she looks at me afterward and says she should be thankful to have such small problems, knowing my son has been teased numerous times for having to wear a helmet when he plays. Somewhere along the way, I had become a living reminder for the group to be thankful for their own healthy children. I always found myself wondering: Where does that leave me?
Without question, I have struggled deeply as the parent of a child with complex medical needs. I have known so much anger over the past six years, sometimes I have felt like it is going to completely overwhelm me. Anger at having to watch Matt feel pain from injuries and medical tests, anger toward doctors who don't know how to help my son feel better, so much anger at watching friends and family around me living a "normal" life, and feeling like my entire world is punctuated by my son's illness. Angry at how life seems to go on for everyone else, but for us it feels like it never does. It's one medical decision after another, one heartache after another, one worry after another.
Do all parents of ill children feel like they might go off the deep end if one more person tells them God gives sick children to the strongest parents because He knows they can handle it? Do they also feel as invisible as I do when I go out with a friend who tries to cheer me up by taking me out and saying medical conversations are off limits? As invisible as when a family member doesn't mention our latest late-night ER run because they assume I don't want to talk about it? My life is dealing with my child's illness. Having to function in circles where people don't know what to say and therefore stay silent makes me feel even more alone in my parenting journey.
This past winter our son underwent a bone marrow transplant. His baby sister was his bone marrow donor, a perfect 10 out of 10 match; a true miracle conceived in one IVF cycle. (Just one cycle, mind you, we had to throw nearly our entire savings into the procedure.) The whole process ended up costing more than US$35,000, but it was well worth it when we took our beautiful daughter home from the hospital, beautiful in her own right and a perfectly matched donor for her brother.
At nine months of age, she was able to safely make a bone marrow donation. I spent two months in the hospital with our son to help him through every step of the transplant journey - the 10 days of high-dose chemotherapy, losing his hair, the nausea and vomiting, and the dreaded stage of mucositis when nearly constant suction is needed for pain relief. I spent two heart-wrenching months in the hospital with Matt, and - for the first time - I found myself willing myself to let go of my anger. There was no other choice but to let go to the medical process. To trust the doctors and nurses to take care of him, because all you can do is help him get through the pain and discomfort in the moment.
As I held Matt's hand, cleaned up after him, read book after book to him, I was able to stop and just watch him.
My favorite parenting guru says the secret to being a happier parent is to learn to love the child you have. I had spent so long worrying about losing him and mourning a healthier version of my son that I hadn't stopped to see that he is a remarkable child.
Even on the days when Matt was too sick to eat anything, he never once gave up, telling me he'd do anything to fix his blood disorder. Even when he was in so much pain that he was kept on a continuous morphine drip, he managed to find this positive spirit again and again to get through the day. The nurses would joke that they would argue in the break room over who got to be our son's primary nurse for the day because somehow, he managed to be brave and kind in spite of it all. My father, who was treated for bladder cancer as my son struggled with his illness, took inspiration from his grandson: "If Matt can get through everything he's been through, so can I."
One morning when he was feeling particularly ill, he looked at my permanently furrowed brow and said, "Mom, you worry about me too much." I laughed and cried, and told him how right he is. In that moment, I knew I didn't want to be angry anymore. I didn't want to live in fear of losing my son, but to live full of joy and love for the person he is.
I don't know what the future holds for our son.
He is only eight-months post-transplant, and there are many cases of transplants failing or instances of secondary cancers and other complications. But I do know that I am thankful for this boy who has touched the lives of so many people with his strength and spirit. I will keep holding onto my brave son's hand and hold on to hope.
Sarah Tufano lives in Littleton, Mass.
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