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.


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.



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.


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…


Give Thanks…

I like fall.  I prefer the optimism and new beginnings that come with spring, but I do love fall.  I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves.  I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind.  But, this year I almost missed it.

I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns. ¬†And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.

fall leaves 2

A testimony on life, and a sad one.

We, like so many others, are busy. ¬†We are painfully busy at points. ¬†There is school, and work, and homework. ¬†There are Physical Therapy appointments, and swim practices. ¬†There are lessons to plan. ¬†There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed. ¬†There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later. ¬†And that’s just here.

There are family members grossly under-visited. ¬†There are people we love so much that live right close to us – who we never see. ¬†There are friends short distances away we haven’t seen in years.

And yet, usually we find a few minutes in the fall.  A few minutes to toss some leaves around.  A few minutes to giggle.  So many thoughts flooded my mind as the last of the leaves hit the bag for this week.  One more clean up and the trees will be bare for winter.  And I looked up at that bright red tree above my doorway and took a minute to give thanks.

I needed to give thanks for the tree, above the new roof on the place we call our home.  I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.

The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…

fall leaves

Meghan got new glasses this week. ¬†She got her first pair in 2009, and her eyes have worsened steadily. ¬†As we picked them up, and she said, “WOW,” and “THANKS!” ¬†all at the same time – I was reminded of the little girl, who is now a young lady. ¬†I am struck by the genuine gratitude as her sight is restored. ¬†I am thankful for my vision, and the doctors who are able to help her have clear vision.

Meg Glasses 2009
Meg Glasses 2009
Meg Glasses 2011
Meg Glasses 2011
Meg glasses 2013
Meg glasses 2013

“Oh how the years go by…”

I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.

For me I am thankful – but it’s more like a flow chart. ¬†One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.

Tomorrow we go for that brain MRI. ¬†The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines. ¬†Brain MRIs really suck. ¬†The only part to really be thankful for there is the part when they tell you they didn’t find anything.

These have been some difficult weeks.  My heart is heavy, and worn.  But I am thankful:

  1. For my daughter, and her unfailing determined spirit.
  2. For my husband, and his loving sense of humor, and his unending patience.
  3. For my parents and grandparents, and the blessings of having them.
  4. For my siblings, as we grow and experience life at different stages and paces.
  5. For nephews of all ages and stages.
  6. For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
  7. For the friends who refuse to give up on me, even as I am not available Рagain.  I take solace in knowing they will be there when I am.
  8. For those I love who are sick in mind, body and spirit.  Their strength inspires me.
  9. For the doctors who care.  Whether they get it right or wrong, my heart is open wide for the ones who care.
  10. For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
  11. For Internet friends – who support when other’s can’t.
  12. For dogs, and their unending loyalty.
  13. For two secure jobs in our home.
  14. For giggling, and tickling and fake hand-made flowers.
  15. For those of you who take the time to follow our journey.

40 years

I turned 40 last week and it wasn’t so bad. ¬†I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.

  • I guess that makes me thankful for hair dye.
  • And for boobs that don’t sag, and no need for a mammogram.
  • For size “small” – cause who knew people wear that?
  • For the Isagenix that taught me to eat nutrient rich food.
  • For the prayers of friends, and the strength and stamina to endure.

MRI tomorrow.  Results to follow.  Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.

MOSTLY¬†I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”

rare meg

Give Thanks!


I like the word “probably” a lot more when it is favorable. ¬†Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’

Today “probably” means it’s most likely migraines causing her agony.

migrane 2


And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.

There was ¬†a thorough exam, and a kind, intelligent neurologist. ¬†He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.

So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.



I understand her cautious suspicion, as things have often not gone according to plan.

However, this diagnosis actually makes sense.  And having lived through my share of migraines, it even explains the level of pain.

migrane 4

So he is 90% sure.

Those are good odds.

Except there needs to be an MRI just to be 100% sure.

And MRI, with gadolinium.  Again.

Three steps forward.  Two steps back.

But once the MRI is done, and clean, and we can all breathe again, then its onward.

The medicine started tonight.  It will be every night.  Relief is long overdue.

Fingers crossed.  Prayers gladly accepted.

migrane 3