I’ll take Condoms

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Over the summer Peyton and I have been spending a lot of time together in the car.  Anyone who knows Peyton, knows he’s wise beyond his years. Sometimes I have to remind myself he is only 10.  The car seems to be the place he does most of his talking.

A couple weeks ago out of no where he asks me why anyone would want to wear a condom.  I pretty much almost drove the car off the road and wondered why they always ask me these questions?  I had boys-shouldn’t they be asking their father?  Nope-always me, always when I am driving, always when I am the least prepared.  I muttled myself thru an answer of diseases, pregnancy, monogamy, abstinence, love, respect, blah, blah, blah – all the while trying not to throw up.

The next day around the very same stretch of freeway, he asked me why he had Muscular Dystrophy?  Why his DNA was bad? Why he couldn’t run like his friends?  Why he can’t be a normal boy?  Why won’t he grow taller?  Why he can’t eat what he wants?  Why is he gaining weight?  Why is his face so round?  – It was a barrage of questions.  Each one another kick in my gut.

Answers were fleeting.  These are tough conversations no parent should have to have with their child.  No child should have to think about.  As he gets older and more aware of his disease I know there will be more questions, more difficult conversations I am woefully unprepared for.

That night as I was telling Ethan about it I told him – I think I would much rather discuss condoms.

 

Happy New Year

January 2nd is a day we will remember forever.  Not like a birthday. anniversary, holiday or celebration but one that impacted our lives forever.  One year ago today we found out our son has Duchenne Muscular Dystrophy (DMD).  A diagnosis that rocked our world.  Tomorrow our son will receive his first mobility scooter.  (There is a story here with lots of people to thank that I will touch upon later)

  Scooter

Never in our wildest dreams did we think we would have a child with a terminal illness.  Never did we think we would be excited to order a device like the above scooter for our child.  It’s surreal.  He is super excited as we have told him how great this is going to be.  We put a smile on our face and tell ourselves this is for the best and it is.  This will help him preserve his muscles.  This will give him independence.  This will help him keep up with his peers.  This will help him!  It has to!

We are doing the best we can.  We just hope it’s enough for our boy.

Each year for us is a blessing.  We are not complaining.  We have learned so much from this.  We have learned that there are wonderful, caring, thoughtful, compassionate people in this world.  We have learned that our family is a priority.  We have learned not to put off plans for the future.  We have learned that we need to experience life now as tomorrow isn’t promised.

We have learned that a hug is priceless.  This year, for Peyton and all DMD boys, hug your babies, parent’s, friends, co-workers and anyone you love.  You won’t ever regret it.

HAPPY NEW YEAR!!!!!

NEW SCHOOL

first day of school 9.9.13

Once you have a child with a disability your outlook on everything changes.   We have no idea what Peyton’s future looks like.  Really, we have no idea what the future looks like for any of our children but we know for sure that Peyton’s is uncertain.  One thing we really worry about is Peyton being ridiculed or ostracized by other children especially once he begins to transition in to a chair.   While we were treated really well by the elementary school teachers and administration at their prior elementary school, we made the decision this year to change schools.  There were several reasons, some based on curriculum, some on philosophy but for me I had another reason.  Their new school is K-12.  Peyton will not have to transition to a new Jr High or High School at the same time his body may be transitioning.  I didn’t want him to have to explain his “story” at each new school and possibly be bullied or ridiculed by those that haven’t been with him from the beginning and have an established relationship with him.  I realize that this may be a false theory but I need to try to place him in “safe” and “friendly” environments.   Knowing his older and younger brother will also be with him gives me a sense of security.  He also has friends from his previous school.

first day of school 3 9.9.13

first day of school 4 9.9.13

Last week we met with Peyton’s teacher, the IEP coordinator, Principal and nurse to discuss Peyton.  Prior to our meeting I gave them a run down on his condition and personality.  This is an excerpt of that email that explains what we deal with and how challenging it is to moderate the disease with his age and ambition:

He is a SWEET, BEAUTIFUL child with a HEART OF GOLD and a SMILE THAT WILL BRIGHTEN UP A ROOM.  He is also very, very BRIGHT.  He is a perfectionist that gets frustrated easily.  He was put on steroids last March and we have noticed an increase in angry outbursts when he is frustrated.  His 1st grade teacher would have him take a walk to the water fountain or around the flag pole to distract him.  Sometimes he can’t stop.  He’s not mean just upset.  We have also found its worse when his blood sugar drops so he was allowed to have a snack bag in class in case he needed food real quick.  Also, all the meds he takes in the morning make his belly hurt or feel nauseous and a quick snack will help.

Most of all we need to be VERY VERY careful with his muscles and bones.  To look at him you really can’t tell.  He is small but that is about all you notice.  Unfortunately his body is betraying him and basically eating away at the muscles.  Each time he “tears” a muscle (which people do every day just in normal activity) the muscle is replaced by fat instead of regenerating as a healthy muscle would.  He can walk up stairs but he shouldn’t walk down.  It’s the downward motion of stairs, hikes, etc. that cause tears.  He shouldn’t jump, run, or do all those other fun things 7-year-old kids like to do.  It’s extremely tough managing his being a kid and playing with friends and what is best for his body.  Sometimes I allow being a kid to overrule.  We do have to be very cautious of his bones.  The steroids cause them to be more brittle and the disease causes a loss of Vitamin D and Calcium.  If he breaks a body part (falling off equipment) he would need surgery to have a pin put in it (casts are not recommended).  This could also cause the loss of his mobility as healing is more difficult. 

Trust me, it’s all I can do not to put him in a plastic bubble but my husband and I want him to have a “normal” childhood full of friends, laughter, knowledge and experiences he will cherish.  Right now his challenges are not as difficult as they could be or may become but we all need to be knowledgeable on the possibilities.

They were lovely and made us feel very comfortable.  The next day I received a note that Peyton was playing hard during recess and scared them a little.  I like that they are concerned about him.  I can’t say it enough, it’s a struggle…EVERYDAY!  I wrestle with getting him an electric scooter now even though technically he doesn’t need one but to preserve his muscles.  Once the muscle deteriorates, there is no turning back.

So far we do not regret our decision to change schools.  Both the boys are very happy.  Peyton told me how much he LOVES his new school.  We just take each day at a time and PRAY for a miracle.

XO

B

MDA CAMP

Today we took Peyton to his first MDA Camp. We dropped off Bear with Auntie Bev and Uncle Joe so that we would be able to concentrate and soak it all in.

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I am pretty sure it’s more overwhelming for Ethan and me than Peytie or Logan.  We understand the magnitude of what his diagnosis means.  He’s a 7-year-old child and is oblivious…as it should be.

Once we arrived at camp I felt a lump in my throat and sinking in my stomach.  First because I am leaving my child with strangers for a week and second because the reality of what is to come.  After checking in his luggage we met his counselor Maren.  She will be with him the entire time.  She even sleeps in the bunk above his.  She walked us through registration and then through the medical process.  Here Peyton had his temperature checked and hair checked for lice.  Gross but I’m glad they check.  Then we had to go through each pill that he takes and make sure that they had the amounts correct, time of day correct and anything else in relation to this process.  Hope he doesn’t give them as difficult of time that he gives us.  I can’t really blame his as some are awful but again, I understand the repercussions and he doesn’t.

His counselor then walked us to his cabin where he would be staying with 6 or 7 other boys his age.

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We saw some other boys mingling around and they are in all different stages of the disease.  A couple have service dogs and Peytie thought he should bring Potter.  We decided Potter is of service to no one unless it’s cleaning up after meals.

Ethan walked Maren through his stretching routine that must be done every morning and evening.  Since the other kids are probably needing the same Physical Therapy, Peyton shouldn’t protest as much.   We then checked out the mines that are next to his bungalow.

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We knew it was time to leave but pulling away wasn’t easy.  Peyton is going to have a blast.  After seeing the operation and meeting his counselor we felt more comfortable. Peyton hadn’t stopped chatting with Maren since we were introduced.  I told her I hope she likes stories because he has quite the imagination and loves to talk.

The sweetest moment came as we were walking away and Peytie came running back and hugged Logan, then Daddy, then me.

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He turned and walked with Maren to his home away from home for the next week.

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We miss him already.  Sure can’t wait to hear all about it.

Daddy has a special surprise for him Thursday.

XO