Thursday, December 1, 2011

Have I Mentioned That Two of My Boys Have CP?

I began writing this post to justify a coveted CP “button” on my blog.  But, then I realized that, unbelievably,  I've never written the story of our “decision” to adopt Ruslan and Will.   (and, of course, the cool CP button is not appearing on my post. ...sigh...anyway...)

I first heard about Ruslan from my friend Amy.  She has a web site full of special needs children in Ukraine who are waiting for families.  ( She posted about a boy, Sergey, who was in an institution.  By the time I heard about him, he was six years old and had been tied to his bed for a year; no school, no therapy, no movement, no bathroom (they just wipe up after him)… nothing.   He was kept half dressed and left on a vinyl mattress all day and all night.   He had developed Scoliosis from lying on his side all the time.  He also had rickets and had lost a lot of his mental ability.  He couldn’t walk, couldn’t talk and no longer even responded to his name.  At the time, we already had five kids at home and our oldest was starting to become a  handful.  We finally decided that Sergey was so involved, we really couldn’t handle him.  So, we said, “no.”  

In the end, God took care of it.  Sergey was adopted by another family in NC.  However, the damn had already burst.  Before I heard about Sergey, I knew that there were orphanages in the world, I already had two adopted kids, but I had NO IDEA that there were children who were tied to their bed 24/7.   ….Now I knew. 

About a year later, Amy contacted me about Ruslan, who had CP and was headed for the same institution.  I wrote down all I could about him and took the information to my husband.  He said, (and I'm quoting him directly here) he said, “No. No Way.  Not a chance.”  I took this as a “Let’s think about it,” and told Amy we were interested.  A few days later, I got a call from Sandy, who had met Ruslan in Ukraine and could give me first hand information about him.  After talking with her for a few minutes, I took the phone to Bill who would NOT even TALK with her on the phone!!  It was a little embarrassing, to have to tell Sandy that my husband REFUSED to even TALK with her.  I started to think that maybe I had mis-read him and I needed a new strategy.  So, I started to pray.  To make a long story short, the next time I asked my husband about Ruslan, God had done such a number on his heart that my husband actually, TOOK HIS HANDS OFF HIS KEYBOARD, looked me in the eye, and said to me, “I guess as long as we’re going over there, we might as well get two, right?” 

I LOVE that!!  Two years and several thousand dollars later, we are now the proud parents of Will (six years old) and Ruslan (eight years old) both from Ukraine, both with CP, both the size of five year olds, and both physically challenged, mentally delayed and emotionally disturbed. 

First Will, who is so much easier to write about.  He turned six a few weeks ago.  He has Ataxic CP  (the floppy kind).  He can walk and really can do just about anything physically, but he falls a lot and he has low muscle tone.  My guess is that he also has FAS (Fetal Alcohol Syndrome) and he’s microcephalic.  Besides the therapies, the only way his CP really affects our family life at the moment is that he needs to hold someone’s hand when he walks.  He’s charming enough that this is not a problem.  He has four eager siblings who line up to help him wherever we go. 

My other CP son is Ruslan.  He is eight and has Spastic CP (the tight kind).  His official diagnosis is Spastic Diplegia (below the hips) but his arms are SO TIGHT that I think he could easily fall into the Spastic Quadriplegia category.  His CP is more of an issue.  When he came here, he could not hold himself up on his legs.  Even with a walker, he was pretty much using his arm strength to stay up and dragging his legs.  He can now walk with a walker, using his legs for support, but he has no balance.  My personal hunch is that this is about as good as things are going to get, but we’ll keep trying.   Also, when he came, he could barely hold a pencil and was totally dependent on his caregivers for EVERYTHING.  He can now take care of all his personal needs (wash and dress himself, play by himself, feed himself etc.) and last night before bed, he was writing his letters on a wide ruled sheet of paper and keeping them within the lines.  

 It’s been amazing to watch his progress.  Because of this, we bend over backward to get him to do as much as he can independently.  It takes a lot of time and half the people in my county think I am a tyrant.  However, I am OK with this.  I’m in the habit of telling the “helpful” people in my local Wal Mart, “Thank you, but unless you want to follow him around for the rest of his life, you’re not really helping.” 

Both boys get PT and OT at school and they both get extra PT and horse therapy after school twice a week.   I stretch Ruslan every morning for about 30 minutes and he sometimes needs help with transitions.  We haul his walker and wheelchair on the bike rack on the back of our Ford and we don't do anything quickly.  It's not pretty, but really, the most surprising thing about the CP is that, as far as their PHYSICAL disability is concerned, once you embrace it and fit it into your routine, it’s usually not a big deal.

The mental and emotional baggage they came with….that’s a different story.  

<a href="" style="border: none;"><img alt="Stumbo Family Story" src="" style="width: 129px; height: 129px;"/></a>


  1. I agree, CP is a struggle because it is what I can see. What I cannot see is the emotional side of things, which are there. being that Nina and Ruslan are from the same orphanage, it has always made me wonder...

  2. Classic Marnie humor. "He said, (and I'm quoting him directly here) he said, “No. No Way. Not a chance.” I took this as a “Let’s think about it,” and told Amy we were interested." You crack me up! I loved hearing how God changed his heart...what a story. And I never knew that Will also had CP and microcephaly. How could I not know that? Wonderful usual!

  3. WOW! 2 at once! Good for you guys! And good for you on keeping at your husband. that's amazing (and inspiring)!

  4. Really fascinating story. I'd love to hear more about their progress in the time they came to their new home. I'm obviously HORRIFIED that they tie children to beds. Who would do that?

    But the other thing is that right now (my boy is 15 months adjusted age) everything is so focused on getting him as much function as quickly as possible. It's interesting for me to hear that even kids who've had less than nothing for therapy can still pick up new skills once given the chance.


  6. AMAZING story!! and good for you for keeping on your husband! ;)

  7. Great post Marnie, so good to read Will and Ruslan's story!