Tuesday, January 22, 2013

Opened door!

I think the hardest part of being a parent of a special needs (do you know how long it took me to use that terminology?)  child is the sudden unexpected breaks in your very own heart.  When Brahm was a baby they came more often - perhaps because milestones also come - more often.

Encase your new or read a thousand blogs (like I do and then get all the kids confused) Brahm is our youngest bio son who was unexpectedly born with a rare form of dwarfism (different than Fei and Griffen).  He is our heartbreak - yes out of all of our kids we find the most personal heartbreak with him.

Because he is our bio son?  I don't think so
Because he has been with us the longest?  I don't think so
Because I carried him and some how I am 'responsible' for this?  It took many years of prayer to realize he is wonderfully made despite me but this was a huge hurdle.
those are possibilities I always keep in my mind BUT

He is our heartbreak because we know that his body will never be as good tomorrow as he is today.  AS the time ticks by so does the function of his little body.  Physically, I mean ~ as in grandpa joint pain in a 6 year old.  As the season's pass we see him with more pain in his little legs.  Soon, our vivacious little boy will need the help of a scooter to get around.  It has already been suggested but we can't even imagine our boy with such a love for sports and all things boy admitting he can't.

So we look for alternatives, we use medication and we bounce idea's off of our friends with way more knowledge in body mechanics than we have.

We start Brahm way early in sports because we know by the time he will be old enough to really play - his body will let him down.  We want him to know what it feels like so when he coaches or even jsut cheers he will have an idea.

Brahm started skiing at 18 months.

Everything bought in the smallest sizes we could find and still to big.
He is a phenomenal little skier.

He has gone down a REAL hill ONCE.  It was a disaster and I had to carry him down the rest of the way.  The leg pain was jsut to great after half the hill.  He could do it in his mind - and I will tell you this boy of ours rarely complains of a pain that would make most people stay in bed.  When he looked at me with his big eyes behind his ski goggles and the tears rolled - my heart broke.

So we go where they have magic carpets or even his mother has been known to trek him up a hill so he can ski down.  But my heart broke for him knowing his days were limited on the slopes.

We have been praying for an answer for over a year.

And that answer came in the most roundabout way!!  You jsut gotta love God!
At our last amputee team meeting they discussed Cav and their ski program at Winter Park, CO.  I decided to google it even though he is 4 - cuz really it's Cav LOL!

As I read through their site - disability ski & snowboarding I thought of Brahm - there were options!!  Was it possible that the answer could be as simple as our boy trying snowboarding?  (We make all our kids ski until 7 and then they can try snowboarding (mainly because I do NOT snowboard and lessons for snowboarding start at 7).

Well, since yesterday was a holiday I finally decided to be brave and take all 6 kids up skiing by myself (thank heavens we had friends who we were meeting but this was a huge step for me.  AS in on my knees begging God that this would be easy.)

Big kids spent the day skiing/boarding with friends and Brahm went to snowboarding school!  That's right Copper mtn has snowboarding lessons for younger than 7 AND equipment that fit him!

Midday - I couldn't stand myself and hiked over to the boarding school to sneak a peak on my boy- oh that sheer moment of joy that a mother feels when you see your child doing something you weren't sure they could AND he had no pain!!  let me repeat HE HAD NO PAIN!!  now I am not naive enough to think it might because of the adrenalin but I am hopeful enough to think this might be an answer for our little dude!!  He did well enough he is ready for the chairlift next lesson!!

AS for the rest of them!!  Well, we realized Fei only had her squeaker shoes so we ran out the night before and found these little gems that actually fit (kind of LOL!))

Fei & Griffen LOVED the snow,
 watching people come down the hill
 and of course the food mommy brought!

My dear friend who loves on our kids like her own,
 and I was able to run to the bathroom without taking the herd with me!

And the biggest praise it was a gorgeous day!

You can see Cav pouting in the chair.  He doesn't like change in routine and being woken up at 6 am to go skiing was hard for him.  BUT we met a fabulous grandpa who was a double amputee and paraplegic who came and talked to Cav.  We were able to show him a sit ski in action and he seemed interested.  Thankfully, he perked back up about 3 and was able to enjoy playing in the snow and being with friends!


  1. Ok, I needed a good cry anyway:) I am so happy for your little man B. Don't you just love the CHildren's team:)

  2. I love how you get in there and expose your children to such wonderful experiences. How you have them embrace life and reach for the stars. :)

  3. My heart breaks for Braum and all the pain he has. I am so happy about the option of snowboarding for him! How great of that man to talk with Cav!

  4. I've been reading your blog for a while and how amazing<3 My aunt recently adopted 3 kids (3yrs, 7yrs and 11yrs) from Ukraine and watching them come along has been amazing and heartbreaking at the same time. We have seen some of the same things: the older ones hoard, malnutrition, issues with boundaries, etc. God has a plan, though, as you know and all of these children will thrive eventually.<3

  5. Yvette, I'm not sure if you see comments before they're published, but I'm writing back to your request. When you wrote to me, you left out one number of your phone number. Please write back on my blog and give me the full number so we can coordinate. It will not be published. Thank you. Anthony, No Greater Joy Dad

  6. I love all of your precious children!!!! praying for each and every one of them!!!