It’s been a while since I’ve written. If I have my way I’m about to get so focused that you’ll get tired of hearing from me.
Life has become a bit overwhelming. And some days all of this, this whole chronic illness thing, is just too much to handle.
There are days the path looks like this.
There are days when it is easy to wonder, “What now?” or, “What next?”
But that is the very mindset that can find us in a heap of trouble.
So we are trying to work on shifting our focus. Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.
We all need a bridge, a support system of sorts.
With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.
I don’t talk too much about me. Mostly because as any Mom, my needs are second to those of my girl. But, I too get overwhelmed. And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.
I am more than the paperwork and medical records. I am more than the bills and prescriptions. I am more than the scheduling and the appointments. I am more than the mastectomy scars. I am more than the synthetic thyroid hormone.
I am a mom.
I am a wife.
I am a friend.
I am a Christian.
I am a teacher.
I like music. I like reading John Grisham. I enjoy Law and Order. I like to laugh. I CAN’T get by without my Isagenix, and my Ionix. I appreciate photography, and I really, really like to sleep.
And with each piece of my identity, the pieces of my foundation get stronger.
There are things I have to do as a person with Cowden’s Syndrome. There are things I have to endure. There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime. But if I am honest – isn’t that what life really is – for everyone? While the issues may not always be medical, the reality is that despite our best efforts, we have no control. So, we do “the best we can with what we have where we are.”
And as I get my foundation in place. As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.
I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.
We will forever do outreach work. We will forever share our story. We will forever create fund-raising opportunities for research. That will be part of our lives. Cowden’s Syndrome will be part of our lives. But it will not BE our lives.
My daughter has seen more in 10 and a half years than most adults see in a life time. She has been medically poked, prodded, and cut. She has been in and out of hospitals. She has seen doctors hired and fired. She has been listened to and she has been ignored. She has had arteries ablated, and a body parts removed. She has vomited pure bile from a stomach torn apart from pain medicine. And she has pushed each day through that pain. She tries to be like the other fifth graders, but she struggles. She struggles to be understood and to fit in.
But, from my stones, my own developing identity, I can see her clearly. Perhaps more clearly than she sees herself some days.
I don’t profess to know all things. She’s a bright preteen. There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.
What I see when I look at Meghan is not Cowden’s Syndrome.
I see a beautiful smile. I see a kind heart. I see compassion. I see love. I see competitiveness. I see a swimmer. I see a singer. I see a reader. I see someone who loves to play hard, and relax just as hard. I see raw determination. I see high standards. I see someone, a young woman who makes me proud to be her mom.
This summer we are going to work on building. I want to be able to provide her stepping-stones. And then I want to help her build her bridge, with a healthy mix of guidance and independence.
I want her to see she has Cowden’s Syndrome, but it does not have her. It is an inconvenient part of our lives – but not our entire lives.
We are going to make memories. We are going to create situations that have nothing to do with doctors or hospitals. We are going to laugh and play. We are going to continue to “Live Deliberately.”
And we are going to write it down. It sounds so silly to think that we have to write down having time for fun, but we do – for now. Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.
It’s not going to happen all at once. There will be days we have to remind each other. But, we will get there.
And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.
Because as we become empowered, we will be rid of the others. Positive influences only. We deserve that.
She made swim practice tonight. No small feat.
The pain – evident, but managed.
Endocrinology consult Thursday.
A balanced thyroid certainly would help a few (dozen) things…
7 thoughts on “Building Bridges…”
I love Bender. 🙂
And, just as I’m about to write a post about how frustrated I am with my current state, I read this spectacular post.
We all- us included- get frustrated. The writing for me us so therapeutic because it helps me weed out the junk and focus. Hang in there!
hi Lori, just wanted you to know that this post helped me. I have Cowden’s. my four year old doesn’t, but my two year old does. My sister was born with an av fistula of the brain which eventually killed her but I have not had really any ill effect until now. I am 37 and have breast cancer. my double mastectomy is upcoming, my reconstruction will be after that, and then my hysterectomy. all this to say that even though I wouldn’t wish it on anyone, I am comforted to know that there are others who have been in my situation and come through with flying colors. I also identify with your own identity struggles. My struggles are not the same as yours, I haven’t had to fight for my young daughter, however my sister’s medical issues engulfed our family as I was growing up. And as the mother of two young children, it is so easy to lose oneself. I’m a couple of years behind on your story, but thank you so much for sharing it with me. God bless you and Meghan.
Kathleen I wish you all the best in every endeavor Cowden’s throws at you. You are stronger. Trust me. Please continue to keep me posted, and if you use facebook, message me through the Beatign Cowden’s page there. Good luck to you.