Keep Swimming… Just Keep Swimming

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend ūüôā

This image has been on my mind all week. ¬†Truth be told there is an awful lot on my mind, ¬†and I apologize that most of it is likely to come out jumbled. ¬†When I don’t get to the computer regularly there is all this stream of consciousness stuff…

invisible illness 4 dumptruck

My girl feels cruddy. ¬†And I know, “its a big surgery,” and “it takes time to even things out.” ¬†But it really stinks. ¬†Her thyroid numbers are way out of whack. ¬†The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them. ¬†If my thyroid numbers were as wacky as hers you’d be scraping me off the floor. ¬†Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too. ¬†Good thing I live in a big city. ¬†I might well run out of doctors otherwise.

It is so hard to watch her  Рfeeling betrayed by her own body.

She is bright.  And kind.  And super rational.  She gets the whole idea that people have it worse.  She is grounded.

But sometimes she is 10. ¬†And she doesn’t understand why she can’t keep up. ¬†Cognitively she can dance. ¬†But physically…

She has to decide on a Friday if we are busy on Saturday morning. ¬†This way she knows if she can play gym. ¬†She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover. ¬†She played last week. ¬†She had the time of her life. ¬†Good thing the school staff doesn’t have to watch her get out of bed on Saturday.

And running. ¬†How she LOVES to run. ¬†And she’s fast. ¬†But she can’t. ¬†Not for long anyway. ¬†Tendonitis, inflammation. ¬†And forget it this week as we TRIED to lower the Celebrex.

Never mind the swimming.  She belongs to a team that practices 4 times a week.  On a good week we get there twice.  Not for lack of trying, but exhaustion gets in the way.  It is CYO season now, so she is with a more recreational team too.  Some fun times.  But she wants to be faster.  And she could be.  But her body betrays her.  And it makes her angry.

And now the headache. ¬†The migraine ¬†returned 2 days ago despite the recent medication increase. ¬†She is just so very tired. ¬†The neurologist called me tonight. ¬†Increase the Celebrex. ¬†See if that helps. ¬†So much for less medicine. ¬†Let’s pray for relief.

Hope-can-grow-from-the-soil-of-illness

I think alot about the others. ¬†I think about the other’s with RARE Diseases. ¬†I think about the ones less fortunate than us.

I also think about the other’s with Cowden’s Syndrome. ¬†I have never met them – any of them except my own girl. ¬†But, we “know” quite a few. ¬†There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers. ¬†We share experiences and ideas, and successes and disappointments. ¬†We toss things out to each other before the rest of the world. ¬†We speak safely to people who “get it.” ¬†And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.

I often go to bed and wake worried about these people I’ve never met. ¬†I think about their physical struggles, and their family struggles. ¬†I pray for them when they have tests, and surgeries, and they do the same for us. ¬†People could argue they aren’t “real” friends. ¬†I would have to disagree. ¬†They give me hope.

I

power-of-persistence

Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter. ¬†And inside the package are jeans for Meghan and I. ¬†Carefully sewn on each rear pocket is the denim ribbon symbol. ¬†Also in the package was a bag “Hope, It’s in our Genes.” ¬†Yep. ¬†It sure is. ¬†A friend of my sister’s. ¬†Inspired my some crazy words she’s read here. ¬†Go figure. ¬†Grateful.

Make-The-Best-Of-Everything

And there are the events coming up. ¬†The fifth grade events. ¬†The ones where she will try her best to fit in. ¬†The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance. ¬†The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food. ¬†Just another way to feel different. ¬†But she plugs along. ¬†Keeps that smile. ¬†stays focused on the good as best she can. ¬†Because she is acutely aware that there is a lot of good. ¬†And painfully aware that things are fleeting.

running away

We miss my father. ¬†It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world. ¬†There is a glitch in each direction. ¬†No major problems. ¬†Always just a series of minor ones. ¬†He may not have been always around, but the time he was was powerful. ¬†Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others. ¬†But I do, we do what we can to keep his memory alive. ¬†We talk about reality, and we keep our most special missions close to our hearts.

Life's not fair

There should be sunshine and roses. ¬†But there isn’t. ¬†Well maybe there is… if we look hard enough. ¬†All I seem to hear are stories of tragedy, heartache and pain. ¬†In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness. ¬†I don’t profess to know the grand plan. ¬†Not for a moment. ¬†And I am sure its better that way. ¬† ¬†I have only learned to find the blessings I can in whatever I can, as frequently as I can. ¬†That is what keeps me sane.

I am far from perfect at this. ¬†FAR from perfect. ¬†But I – like all of us, am a work in progress. ¬†So as the days sometimes seem insurmountable… ¬†I remind myself, and my girl – that we have to follow Dory’s advice…

just_keep_swimming__3-334182

Here. We. Go. Again.

This will be the year the surgeries outpace the age. ¬†She’s been running a cool average of one a year for quite some time. ¬†Now, at just about 10 and a half, she will get a jump start of her 11th surgery. February 13th. One week.

11-candles

That’s 11 surgeries. ¬†Full on. ¬†Operating room. ¬†General anesthesia. Waiting for pathology. ¬†Sometimes ICU. ¬†Often staying overnight. ¬†Real deal surgeries.

hospital

By my count we have been in 4 hospitals.  We have a system.  Felix goes into the OR.  I stay overnight.  It works for us.

system for surgery

Who has a “system” for surgery?

And that’s not the tests. ¬†The MRIs that early on required general anesthesia, the three thyroid biopsies, the ultrasounds in countless places. ¬†Nope. ¬†Those have their own tally altogether.

My Grandma is 93. ¬†She hasn’t had surgery yet. ¬†Meghan thinks that’s weird.

That’s life with Cowden’s Syndrome. ¬†Healing is “BEATINGCOWDENS.”

Surgery Рthe new normal.  Organ removal Рthe necessary means to avoid something worse.

I expected the surgical consult to be on the 6th. ¬†Then my cell phone rang on the afternoon of the 4th. ¬†It was confirming our appointment for the 5th. ¬†The day it was going to snow, and ice and create horrendous road conditions. ¬†And, if I couldn’t make it – it would be another month.

So, I spoke to my super understanding boss.  I rewrote my plans for a Weds. absence instead of Thursday, and after chopping anout 1/4 inch of ice off everything we left home at about 10:30 Weds. morning.

guardian angel

We have created quite an an army of guardian angels, and I called on every single one of them to guide our trip.  They were on point.  Not a hitch.  We were sitting in the waiting room hours before our appointment.

I got to develop the pit in my stomach as the young superheroes and their parents spent the afternoon on chemo pumps.  Pushing time.  The beautiful bald two year old in the blood room was a reminder to mind my blessings.

I had been under the impression I was coming to discuss IF surgery was a good option. ¬†I had already decided I was unsure how I felt about whatever the poor pediatric surgeon at Memorial Sloan Kettering Cancer Center was going to be able to tell me. ¬†But, I was a bit shocked when there really was no “if” in the room.

Her neck was examined. ¬†Her notes reviewed. ¬†I was reminded again of the failure rate of Fine Needle Aspirations for the thyroid. ¬†(Close to 10% in case you wanted to know.) ¬†I asked again what made her a good candidate for a complete thryoidectomy at 10. ¬†The nodules. Consistent growth. ¬†Vascular feed. ¬†The tickle in the throat… It’s time they said. ¬†It’s time.

nodule

I lost my thryoid at 20 in 1993 to a condition called “multinodular goiter” and “Hashimoto’s thyroiditis.” ¬†They both stink. ¬†But now I find myself wishing for such benign conditions to be the final result of the pathology we will receive 5 to 7 days post op.

Everything is moving faster here. ¬†I don’t like it. ¬†Not one bit. ¬†I am a numbers person and these stats make me ill.

But, onward we go… because what choice do we have?

There will be work.  Follow ups.  Thyroid hormones to balance.  But we will figure it out.

She laughed today.  A lot.  Maybe she is relieved without the uncertainty.  She knew.  We all knew.

Saturday I will sign her up for her second year of CYO swimming.  The surgeon says only a week out of the pool.  And her scar should be half the size of mine.

never never give up

refuse to sink

Two days off of school ¬† Then a vacation. ¬†Kind of. ¬†A “Stay-cation.” ¬†Daddy will be home too. ¬†Some movies, and maybe even some resting. ¬†Maybe some healing for all of us.

She’ll be back in full effect. ¬†Ready to rock “RARE DISEASE DAY 2014.” ¬†Denim ribbons. ¬†T-Shirts. ¬†Movie night.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

A girl has to have SOMETHING to focus on.