When your child is in clinical trials, you become an expert at filling out surveys. One survey that I dreaded every month for almost 2 years was a Duchenne parent survey. The questions were simple by design but deceptively difficult.
One of the typical questions I was asked was similar to this – Can my child participate in recreational outdoor activities with other children his age? It was a multiple-choice question with answers that ranged from “Yes, easily” to “No, not at all.”
Logically I can say that he can play with friends his age. But many things are difficult for him, while some are even impossible. I was surprised that they provided an answer to that. Easy enough. Right?
After a few pages though, I started feeling anxious. There were several pages of questions all related to how my son has difficulty functioning as a typical child would – everything from lifting books to getting out of bed to hiking. I got more distressed the further I read.
In all honesty, answering these questions forced me to really think of the physical ramifications of this disease. I had to transfer my fears, frustrations, and even jealousies to paper.
I started hoping there was a comment box at the end because I had plenty to say. I am aware that our situation isn’t the doctors, clinicians, or even pharmaceutical companies’ fault. In reality, most of them truly want to help find a cure. TJ’s situation is no one’s fault. I know that in my heart. But, AGGHH!!
I wanted someone to ask me how I expect him to be able to do those things. I wanted someone to ask me what I expect to see from all of the doctors’ appointments, blood draws, rounds, and rounds of medicine.
Someone, please ask me what I expect to see after all of the sacrifices we as parents make. I wanted someone to ask me something that would be meaningful as to my hopes and dreams for my son. That question didn’t come, to my utter shock, until the very end.
The final question was if his disease stayed the same as it is “right now”, would I be very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied. My logical mind immediately said “Yes! Very satisfied.” He could live past his teens or 20’s! He would have a chance to become an adult!
The mom part of me wanted to kick my logical mind’s butt and then fill in my own “other” section and say “NO! I’m not satisfied. And do you want to know why Mr. Survey!?”
As you can tell by the other 8 pages of your form,
- My son can’t walk more than a block without needing rest.
- He can’t hike
- He can’t climb a flight of stairs. Heck, he needs help going up a small curb.
- He can’t play competitive sports with his friends.
- He can’t walk at or carry a backpack to school.
- He has to take a fist full of pills every single day.
- And then he has to take a few more at night to help him sleep, counteracting the effects of that fist full of pills he takes every single day.
- He’s never been able to ride a bicycle or skate.
- He can’t even pour himself a glass of milk.
So, no. I’m very DISsatisfied! And while you’re at it, you know what you can do with this form?!? (Okay, so flat out anger hit me like a freight train.)
But then that annoying, but oh-so welcomed, logical side reminds me that I have my son. I prayed for him and his brother since I was a little girl. I remember lying in my bed as a child, surrounded by posters of Michael Jackson and 80’s Hair Bands, asking God to just let me be a mom. God, for some reason only He understands, granted me my wish, twice!
He entrusted me with two wonderful boys – two of His children – one of which has special needs. He granted me the privilege of being their mom.
At that moment, alone in a hospital room, I started to type. With tears in my eyes, I started to pray.
Ultimately, I had to remind myself that one of my two biggest blessings is an amazing and special little boy. I decided to make a different list, a list of reasons we are satisfied.
- He’s happy!
- He has great friends who have amazing parents that support us.
- We have dedicated family, friends, educators, community, and church family who lift us up every day.
- We have more support than we know how to process.
- God has strategically placed even those negative people in our lives to help strengthen us one broad shoulder at a time.
- We have the opportunity to contribute to science in a very real way.
- Even if the clinical trials don’t help TJ and the Duchenne community as we hope they will, it will lead scientists closer to a cure for some boy – some boy that has siblings and parents that love him.
- Hopefully, one day another mom and dad will not have to hear that their child has a 0% chance of escaping this terminal disease.
- Another mom or dad will not have to know the despair of hearing their child has this disease that is 100% debilitating and 100% fatal.
All of those reasons provide more than adequate motivation for me to get out of bed every single day, paste a smile on my face, and strap on my fighting gloves.
What our family is doing now will be a part of history. Eventually what we are doing now will help make Duchenne to not be a part of some family’s future reality.
So, YES I am VERY satisfied. How can I look at my children’s smiling faces and not be anything but satisfied?
We tend to focus so much on what we don’t have in this life that we lose sight of what we have been promised in the next.
Even throughout all of my years in college – through all of the tests, papers, and final exams trying to obtain my degree, I have never been more challenged by a question as I have by this one – “Would you be satisfied if…”?
By the time I finished the survey I still wanted a comment box, but I wanted to say that “Yes, through faith, hope, determination, and love, I am very satisfied.”
Mahatma Gandhi said “Satisfaction lies in the effort, not in the attainment. Full effort is full victory.”
I will teach my children to give it all that they have today. Live life to the fullest, at this moment. Be content with the life you have right now. Because your life is exactly the one you are meant to live.
“For he satisfies the longing soul, and the hungry soul he fills with good things.” Psalm 107:9
Overwhelmed with negative thoughts?
Try This:
When I have a difficult time putting feelings into words or even when the bad stuff outweighs the good in my mind, I pull out an old trick of list-making. I take out a piece of paper and draw a line down the middle.
I start with the list on the left – the suck-list. This is the list of all things that are difficult, depressing, gut-wrenching, or unfair. Personally, it’s not only okay to make the suck-list, but it’s also necessary for me to get them out of my head and in front of my eyes. It helps me to not internalize those negative feelings which give them leverage in my life.
The key is that I always make a rebuttal list. I make a list of why the suck-list isn’t the most important one. On the right side, I write everything that trumps the crap. It’s my love-list.
Friends give voice to your fears and disappointments. They are real and justified. Just don’t give them the FINAL say. Let the love-list reign and take root in your heart.