A funny thing happened today as I was being interviewed for this blog. I was sitting down Pediatric Home Services to discuss my advocacy and mission in sharing content on this page. It was a candid conversation about how the blog was born, my journey as a special needs mom, and my thoughts for the future. Then came the question that almost made my heart sink to the floor.
“What do you hope for your child’s future?”
On the surface, it’s a very innocent and innocuous question. Most parents dream about the future of their children. All of us have thoughts and visions for the way we see the future. Some of us imagine high school proms, graduation, going off to college, and many think about our children settling down and starting their own families. Then I realized, I don’t have those thoughts, feelings or dreams. When I think about my son’s future, I feel complete and utter fear. The kind of fear that makes your heart race, hands sweat, and where you want to hide in your closet and close the door. The truth is I don’t want to think about the future of my son.
My son isn’t typical of everyone else’s kids. My son has so many medical conditions it can fill a small journal. His medical records at age two were more than a 4 inches thick. Last year when we needed to provide our insurance information to the state for his medical claims, the claims measured two feet tall and two feet wide. My son is medically fragile, with multiple systems either completely missing or failing. The truth is it’s hard to envision a future because I honestly don’t know if he will live.
Uttering the words that my son could possibly die in his childhood, gives me a knot in my stomach so tight I feel like I could throw up. However, it’s a grave and genuine reality in our life. We know that at any time one of his compromised systems could just quit working. We are aware that he’s on numerous medications that sustain his life, and his body could stop responding to any of those drugs. His heart is slowly failing, and over time we will need to have his chest opened for open heart surgery. He can’t eat by mouth without choking, and he can’t burp on his own which causes him to gag and choke. This is not a place where you think about the future. Most of the time I’m just living day to day.
When I look beyond today, it is hard to make plans. It is hard for me to get comfortable in a “normal” routine because I know that everything can change in an instant. I know from experience a common stomach virus will mean a hospitalization for my son. Viruses like influenza or pneumonia could kill him. There is so much out there in the world that could take him down I never have time to think, plan or dream about his future. I am too scared to even have dreams about his future because I don’t want to live on false expectations or in denial.
There is sadness in the fact that I can’t just get excited to dream or envision the future, but it is likely a scenario that many families in the medically fragile world feel every single day. Of course, we want to have dreams for our kids, but we know all too well that there are so many obstacles standing in the way of that future. Many of us have seen our children on life support. Others of us have watched our children clinically die and come back to life. The harsh reality for all of us is that sometimes dreaming is simply too hard to bare.
My mind races to the fact that even if he grows to become an adult, the reality is that he will never live fully independent. Not only does he have multiple medical conditions but he is also Autistic. He will need support and help to manage his health for the rest of his life. Instead of thinking about where he will go to college, I am already thinking about obtaining guardianship of him when he turns eighteen. Then I begin to wonder if he will live in our home or if a group home would be better for his self-esteem. No child wants to stay in the nest forever. They are supposed to grow and spread their wings. Some kids never, ever leave their homes. Some kids even though they grow up biologically they never mature emotionally or mentally. How do I dream about a future for him that is beyond what I could even imagine?
If he does survive and lives into adulthood, who is going to care for him when I die? My son has multiple medical needs and daily living skills that he will require assistance with for his entire life.
Who is going to manage that care?
Where will he even live?
Will they love him and care for him with the compassion and tenacity that I do? Will he have an adulthood that is fulfilling and full of dreams?
These are the questions that make that ball in my stomach get tighter and tighter. This is why it is so hard for me to think about the future. I want for him to stay a child forever where I can protect and advocate for him. I don’t want him to have to live in a world where his disability deems him incapable of employment. I don’t want him to have the heartache of not having friends, a wife, or children. For me, the future is so hard to consider that I just push it out of my brain entirely.
The truth to this question is actually very, very simple. When I look to my son’s future, I want him to live. I do not want to bury my son. I know it seems so basic and elementary, but it is my truth. I want him to grow up and live to be an adult. That is what I want for his future. For some parents in our community, I am sure that they can say the same thing.
Please tell us what makes it hard for you to think about the future of your medically fragile child. Comment below.