We have been blessed with two special daughters and two sons from Eastern Europe. We welcome you to follow our journey as a family of five, waiting to travel and pick up #6, with the ins and outs of family, education, farm life, and love!

Thursday, June 12, 2014

Frustrated, but remembering HIS plan is perfect

When we first saw a picture of Mila, we thought she would be much like Hannah.  Mila was sitting in pictures, holding herself up, smiling, holding toys.  We thought she would be mobile with minimal assistance.  The first day we met her in her home country of Serbia, we took her with one of the caretakers into town to have her passport picture taken.  I remember sitting in the park across the street as we waited for her pictures to be ready.  I remember looking at Mila, then looking at Doug and saying, "We're going to love her to the best of our ability..."  I remember my first blog post, sitting in our apartment crying as I typed, thinking of how one of our good friends rode on the glider with Hannah just days before we left the country, talking about how he couldn't wait to ride with both the girls when we got home.  And here we were, in a country, far away from home, where I was admitting to myself and everyone else, that the little girl we were adopting was going to make strides in her own way.  I really thought in those first days, she might not ever talk, we would be spoon feeding her for the rest of her life.  That we would love her, but I wasn't sure if she would every be able to show love back.
Sitting in the park waiting for her photos. (Belgrade, 2009)

I've prayed for Mila many times, praying that the Lord would help her learn and grow.  And those of you who know Mila, know that she talks, finger feeds herself, and is highly opinionated.  She has a WILD imagination.  Though we had hopes of her being mobile, it just hasn't come to fruition.  We tried a gait trainer that gave her maximum support to be able to walk.  The few steps she would take, were labored and highly assisted.  We tried a crawling device.  She screamed and threw a fit when we put her in it.  Though she will army crawl short distances at home, being non-mobile frustrates Mila.  I truly consider Mila to be a child "trapped inside her own body".  She wants to be mobile.  She wants to leave an activity when her sister leaves her.  She thinks she can and then reality of her lack of mobility sinks in.  And when someone doesn't come to get her right away when she calls, she screams and throws a horrible fit.

Two years ago in March, we purchased a used minivan, hoping it would make loading Mila's manual chair easier on my back as I am the one who takes her to school each day.  Our other vehicle, I had to take the wheels off the chair to put it in the back.  That same summer, our Physical Therapist suggested we try Mila in a power chair.  Not knowing where the trial would lead, we worked all summer on driving technique.  Mila was a different kiddo.  She was independent.  She could go where she wanted.  She could "run" outside like her sister.  She could "walk away" from an activity when she was done.  She didn't need to wait for anyone to carry or push her to a new location.  After months of trial, we had to pass a test with a doctor to prove she could safely maneuver the chair.  After all, power chairs are an expensive piece of equipment.  Mila did well, and a power chair was recommended for her.

When Mila fist got her chair in October 2011, Eli was just newly home.  He was much like an infant.  He was barely crawling.  We thought Mila was best to work with her chair at school.  So we took the chair to school the last two school years and left it there during the school year.  In the summers, it comes home.  We continue to have her manual chair to use on daily outings.  And when the weather improves and she wants to be outside, we go to school and bring the chair home for the weekend.

Mila is quickly outgrowing her car seat.  She is 38 pounds.  She is 48 inches tall.

Today I met with the girls provider from our county Board of Developmental Disabilities (DD).  The DD has been wonderful in assisting us with the purchase of adaptive equipment for Mila when we need it through her Medicaid waiver.  I asked about the possibility of outfitting our van to accommodate Mila's wheelchair.  I was given names and told to let them know what I found out.  There is money available.

I wasn't ready for the gut-wrenching blow.  One company told me told me our vehicle had to be 2011 or newer to outfit, and under 50,000 miles. (Our Honda van is a 2009 and 80,000 miles.)  Another company told us, yes, they could modify to the tune of $20,000-$30,000.  When Doug picked his jaw off the desk, he commented on how expensive it was.  The lady commented that is why families typically purchase a van with a ramp already installed.  When you look up accessible vans, they are in the tune of $30,000 and over for used.  If you want a new van, outfitted with a ramp, there are some out there to the tune of $40,000-$70,000.  REALLY?  I'm not wanting luxury for my daughter,  just access.  To be "normal" in the world she lives in.  To be able to get in and out of the car independently.  To be able to access her community independently. 

And so tonight, I'm feeling pretty defeated.  Defeated that I cannot provide my daughter the access to the community that every person deserves.  I have no doubt that Mila is much better off today in a loving family than her days of laying on her back for hours on end in a crib in an orphanage (or at this point of her life, in a mental institution) in her home country of Serbia.  She's come a long way from the little girl I met who looked through me.  She laughs, she makes jokes, she loves.  She's got a feisty attitude.  But today, I feel we are holding her back because we aren't able to get her what she needs.  That's hard as a parent to stomach. 

So tonight, though feeling horribly defeated, I'm trying to remember that God's plan is perfect.  His plan and my ideas on how life should go don't always mesh.  I needed the reminder that HE had great plans for Mila long before she was even born.  HE knew a couple from a world away would fall in love with her auburn hair and ornery grin.  HE knew we would travel around the world and say yes after our first meeting with her.  HE knew we would commit to love her, no matter what.  HE knew she would be angry, and have horrible outbursts when things didn't go her way.  HE knew that this family would provide her with great opportunities, and most of all, HE knew we would love her, just as HE loves us--unconditionally despite our flaws, our shortfalls, and our mistakes.  HE knew we were the perfect match for her and he for us.  I just need to remember HE has the perfect plan, in HIS timing.  Not mine. 


Caylee said...

How heartbreaking for Mila and your family -- and how necessary it is for mandatory, national standards to be established!

For a kid in a power chair, like your adorable Mila, the PAP should be required to demonstrate:

- their home is wheelchair-accessible (so the kid has access to the WHOLE house, not just the main floor if bedrooms/family room/etc are up or downstairs)
- that they have or can afford a wheelchair-accessible van

(For a kid in a power chair, a wheelchair van should be mandatory).

The requirements should be tailored to the prospective child's special needs:

- a family in a remote are must identify doctors who can provide the specialized care a kid with [disability] requires
- willingness to travel (as often as necessary) to obtain the specialized [disability] care their kid needs
- insurance that covers sedation dentistry (I can't tell you how many families I know who've left their new child suffer for weeks/months with abscessed, infected teeth when insurance won't pay for sedation)

Devon said...

We adopted Bowen, who is a quad amputee, from Serbia right after you adopted Mila. He has been in a power chair for the last three years and we do not have a wheelchair accessible van either. He has this really cool chair that actually comes apart in four pieces so I can easily take it in and our of the car. They don't make his exact model anymore but here is a link to a similar model. Hope this helps! Keeping you all in our prayers! http://dmeshoppe.com/wheelchairs/go-chair.html