don't give up

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had.  She is tired of doctors.  I can’t blame her.  So am I.

Watch this.  Scan that.  Come back and see me about that… UGH.


So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of  “every 6 month” appointments, it is almost impossible.  And then when I looked at the tears in her eyes I promised to try.  “I just want a little time to be bored!” So I got a jump on our summer appointments.  So far I scheduled 12 from June 27 to July 16.  I have used only 6 days to do it.  There is one day with 4 appointments, two days with 2, and the other 4 each have their own days.  Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer.  At least I can dream


She is also tired of homework.  Even from teachers with the best of all intentions.  She is tired of the stress of the upcoming State exams, even as I work to downplay it.  She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary.  You would have thought I gave her candy.  She used to love everything about school.  Now the best I get from her is that she likes her teachers.  What are we doing to these kids?


Her thumb still hurts.  Injured at dance on Monday.  Its been 3 days.  Seems like it is going to linger.  It isn’t – or doesn’t seem to be broken, but she is done dancing.  She told me yesterday.  She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body.  Now its dance.  Sometimes she can hurt herself just walking up the steps.  What next?


No more PT in school.  She doesn’t need it.  Or so they say right now.  We will double check just to be sure.  But there is lots of PT going on.  Strengthening that body.  Preparing her to swim like the fish she wants to be.  More testing in school when we return.  Just to make sure she is getting everything she needs.  Nothing more.  Nothing less.


god helps us handle

Holy Week services at a new church.  Sunday we become members.  Warmly welcomed – attending as a family.  Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.


Our lives are full of transitions.  Like the lenses on Meghan’s glasses – changing with the environment and the circumstances.  We are growing together.  Learning our roles.  Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people.  We are working on our health, and our own maintenance appointments.  We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong.  In school.  In sports.  In extracurricular activities.  In religion.  On our lives.

Big changes all around. God’s plan unfolding.  Eyes and ears and heart wide open.

leap of faith





It’s trickier in the overlap

Sometimes I think maybe if we were just battling one thing at a time… it might be a little easier.  Maybe I am wrong, just wishful thinking.  I guess I won’t know because apparently we are tasked with completing multiple battles simultaneously.

Last night we spent hours full of uninterrupted discussion with the pastors of the church where we will be spending our time.  It is hard to know what to call it.  I am not in any way prepared to give up my membership to my home church, and they know and respect that.  Yet, it was so nice, so warm and comfortable to sit with my husband, and these pastors, and have discussions, both personal and theological.   No one was judged.   Everyone was comfortable.  Mixed emotions 2 and a half hours later, past everyone’s bed time.  Our children finished playing, and we left – tired but peaceful.  It’s nice to know where we will be every week for a while.  Its kind of like finding that first permanent job after years of subbing.  It is also nice to have my husband by my side.  God works in very strange ways.

We had planned to be out of the house at 9 to go apple and pumpkin picking this morning.  We were a bit delayed by the late night, but we made it.  It was so nice to see Meghan happy.  She doesn’t ask for much, but had specifically asked for this.

We made her walk, and she did well for a while. Only towards the end did the pain in the legs start in.  Cowden’s Syndrome always nipping at your heels as you try to kick it to the curb.

When in doubt – Daddy is the safest ladder!
Me and my girl!

My PATIENT husband! 🙂

So after such a nice morning – with only minimal pain, a bit of fatigue and a lot of happy, we headed home.

I had missed my standard Friday night grocery shopping at our meeting last night, so we decided to stop by Wegman’s on the way home.

LOVE this place!

I think we made it about three aisles before a look of horror crossed Meghan’s face.  Then there were the tears.

She opened her mouth and again, for the second time in the two weeks since she has had her braces, a bracket popped off.  Now I know this isn’t totally uncommon, but twice already seems excessive for a kid who doesn’t eat ANYTHING she shouldn’t, and who is so attentive to these braces your would never imagine she was 9.

So, as we begin to reassure her that we will take her to get it fixed, SHE reminds US that it is a holiday weekend, and with sheer frustration on her face, she realized – half to herself – and half out loud – that it would be Tuesday before she could have it fixed.

These aren’t Meghan’s braces, but they give you an idea of how hers are set. While they wait for the rest of her teeth, the wire doesn’t terminate at a band on the molar, like I remember, it ends right on a bracket. When that bracket pops off – the wire flies free.

I really was stunned.  There in the middle of the grocery store, with a cart half full, our peaceful couple of hours was starting to crumble – again.  Daddy took Meghan to some neighboring stores.  I quickly finished the shopping, and we headed home.

The car ride was quiet.  I was twisted.  This kid has had enough.  More than enough.  A break for one WHOLE day would be nice.  As I sat, I shed a few tears of frustration.  I left a message on the answering machine at the orthodontist, trying to decide if this was a “true” emergency.  My husband decided it was and called the cell phone number soon after we got home.

He called us within an hour.  He is a good man.  But, he was away.  “Clip it,”  he told my husband.  “Take the wire and the bracket off.  I will fix it next week.”  And so the electrician turned orthodontist, and off came the bracket.


And yet as I looked in her mouth, the mouth I help her brush and floss, and I see the swollen gums, enveloping her braces, my stomach turns at the conversation next week.  We will both be told her oral hygiene is poor.  I am sure of it.

Cowden’s means overgrowth.  The gums are supersensitive.  Reacting to the braces.  Trying to swallow them up.   We floss, we brush, we poke and prod.  No success.  Certainly we are trying out best.

Nothing is simple.  Every battle is crowded by another.  It’s not just the Cowden’s Syndrome.  And it’s not just the regular growing up stuff, like changing bodies, and braces, and homework, and after school activities.  It’s the overlap.  That’s where things somehow always seem to get tricky.  Right there in the overlap.

Daddy made a tasty dinner.  Chicken wrap with fresh guacamole.  Things were looking up.  Then, they started to decorate the BIG pumpkin.

Sleeping peacefully.  Potentially a dreadful weekend, salvaged by a clipped wire.  Emotions all across the spectrum.  Another day in the life.  Another day of sorting through the overlap.

And, believe it or not – since I share it with the two I love the most – at the end of the day I wouldn’t have it any other way!-

Random Reflections – nothing profound today!

We tried another church today.  This time all three of us went.  A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless.  Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

Førde Church, a typical Protestant church in N...

God has a plan.  And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.”  I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me.  So we will see.  At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day.  Glad we got in a swim yesterday.  It may have been the last one.  We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner.  Hoping its nothing too serious. 

We got to spend the afternoon with my grandparents and my parents.  Last minute plans are always a treat when we get to be with family.  Pop was 93 last week.  Grandma will be 92 in 2 weeks.  GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday.  She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things.  I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend.  She told me I could get it Tuesday.  I chuckled.

No matter how hard I try…  “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday.  I will not physically be able to have the CD burned until Friday.  They will get it in about a week and a half.  At which point she nicely reminded me that it could be serious.  To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think.  But, what I meant was, I have undergone 2 major surgeries in the last 6 months.  I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one.  Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD.  I will get the results of Meghan’s blood test and MRI.  I will call Meghan’s school and sort out the busing mess that is developing for the first day of school.  I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed.  I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work.  We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine.  LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!