Posted by: ramonamom | June 12, 2008

Heart Thoughts From a Special Needs Parent

This post veers away from our usual methods of writing, but it is particularly meaningful and a wonderful glimpse into the heart of a parent whose life is focused on serving her Lord through her family. Tomorrow I will post a video about this family, also.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It was just one of those days, and the shoes were the final straw for
me. It was Sunday. We were moving through the typical Sunday rush of
trying to get eighteen people out the door to church with clothes that
matched and also fit the bodies wearing them, no signs of breakfast on
faces, and diaper and cath bags all properly packed. I was, as usual
for Sunday mornings, closed up in my room doing hair on each girl –
one at a time. While moving through the routine of plugging in curling
irons, digging through the hairbow box, and drying my own hair, I had
been pondering some topics from a recent discussion with Scott
involving some language issues with Madlin that seem to be related to
her learning disabilities. Mainly these centered around whether or not
more testing would help us know how to help her more. Sigh…. more
testing? We’ve been down this road enough times to know that often
this is just a waste of time and money. But not always, and therein
lay the dilemma.

While I was thinking through these things again, our twenty-five year
old developmentally disabled daughter Erin came in so that I could
help her fix her hair. While I was working on that, she started to
talk through tears about her time at the theater the night before. Our
older sons often take her out to a movie and sometimes dinner since
she doesn’t get to do these kinds of things very often. They had all
gone to see the Indiana Jones movie the night before, and while she
was waiting for the boys to buy tickets, she had noticed an older girl
with two younger ones, also waiting to buy tickets. She overheard this
girl tell someone that she was twenty-five and that she was taking her
younger sisters to see a movie that night. Erin said to me, “I kept
thinking that if I didn’t have this disability, would I maybe be
taking my sisters to movies, too? I wish I could do that.” Oh, man.
There it was. That old familiar knife-in-the-stomach pain that I have
mostly learned to live with. I was running late and felt completely
unable to come up with the words of comfort and wisdom that I knew I
needed to come up with. I muttered something about knowing that God
didn’t make mistakes and that, as bad as it hurts sometimes, we have
to trust Him to decide the paths of our lives. It mostly sounded to me
like, “Blah, blah, blah. Blah, blah, blah, blah.” I wondered if it
also sounded like that to Erin
. I shoved away the feelings of sadness
and guilt and moved onto the next girl in the rapidly growing line
outside my bedroom door.

One by one I managed to complete a fairly decent “do” for each girl.
Kathryn was very “on” today and so excited because she was planning to
walk into church again this Sunday with the aid of her new crocodile
walker that her PT is training her to use. Last Sunday was the first
time she had ever done that all the way from the front door to the two
“Rosenow rows” in the sanctuary, and then all the way back to the van
after church. She was especially excited because I had just gotten her
a new pair of Sunday shoes to wear instead of her tennis shoes.
Finding shoes that will fit over orthotics is no easy challenge. We’ve
gotten pretty good at locating tennis shoes that will work, and a
company called Hatchbacks makes a black dress shoe for girls. But
Kathryn loves her sisters’ white church shoes. Well, I found a darling
little shoe made by Robeez in their new line called “Tredz” that fit
over her braces. They weren’t cheap, but we ordered her a pair, and
they arrived just this week. Beautiful white slippers with little pink
flowers on them – very “Kathryn.” She was so thrilled that she went
into her little CP grin and got stuck there for quite a while when she
saw them the first time. I thought her face would freeze like that.
She isn’t very verbal yet, but she had made it clear that she couldn’t
wait for Sunday.

After all of the girls were adequately coiffed, I made my way
downstairs where I started helping get braces on and complete the
final round of toothbrushing, potty runs, and catheterizations while
Scott got both vehicles ready to be loaded. As I was working on
Kathryn’s braces, Caelyn headed to the bathroom to cath herself, but
her crutch hit the lid to a plastic toy bin that someone had left out.
She went sprawling onto the floor, face hitting first. I was sure that
she must’ve bloodied her nose or mouth, but she got up and stoically
brushed aside a tear or two and assured me that she was fine as she
continued to make her way to the bathroom. Aw, the knife again.

Colin, who is blind, walked into the basement door that someone had
left open and hit his head as he was trying to find an empty bathroom.
Ouch, I felt it again.

Once Caelyn got into the bathroom, she couldn’t get her Mitrofanoff to
drain with a catheter. Okay – uncork your SP drain and empty your
bladder that way until your surgery (AGAIN!) next week to see what’s
doing on. More knife in the stomach, and this time it felt like
someone was twisting it.

I told myself to shake it off. We are late and we have to get the vans
loaded. Braces were in place on Kathryn’s legs, and it was time for
the big moment. It was time to put those new shoes on my little
princess. But, no. They wouldn’t go on. They fit on the braces without
her sweet, fat little foot in them, but it didn’t work with brace,
shoe, and foot. My mind began to race, and the adrenaline began
pumping – this is NOT happening. This stupid shoe IS going on those
precious feet. I don’t care what I have to do to make it happen. I
WILL get these on her. I was determined as I saw the understanding
begin to dawn in those big brown eyes of Kathryn’s. I didn’t want to
see the disappointment that I knew would peep through eventually. Then
suddenly, there it was. She can’t express it, but she knew that Mommy
couldn’t make her new shoes go on.

I’m ashamed to admit it, but this was just too much for me. I slumped
to the family room floor and just let the knife go in as far as it
would go. I just stared and wallowed in the pain, and let the tears
start to fall while Kathryn stared at me. Why did this seem so
impossibly hard to accept? Why did I feel like I would never get up
from that floor again – like all I wanted to do was draw all of my
“broken” little ones to my heart and rock them and sing to them and
put Band-Aids on all of their hurts and tell them that in a few days
the hurts would all be gone. I don’t know why, but that is what I
wanted. Suddenly, it was all just too big and too hard.

I did manage, with Scott’s help, to get Kathryn’s old tennis shoes on
her, and with her hair in a little bun and ringlets at her neck and
temples, and with her lacy pink dress, she still looked beautiful –
like the miracle child she is. We went to church, and she walked in
wearing her tennis shoes. But it hurt. It hurt a lot, and the pain has
stayed close to me all day.

I believe that others of you in this group must also have days like
this. This is quite a journey we have embarked on, and not one to take
lightly. And somedays we just have to cry and remind ourselves that we
aren’t strong enough to see this through. That we aren’t wise enough
to guide our children through the tumultuous and painful paths that
their lives will follow. On those days, we have to let Him lift our
chins so that we can look into His eyes and confess that we don’t
understand. And we have to rest on His chest, knowing that He cries
with us and has promised never to leave us to do this without Him.

It was just one of those days, and now I have to go to sleep and pray
for a brighter day tomorrow. I have to choose to focus on that
incredibly deep dimple in Kathryn’s left cheek, and Colin’s great
sense of humor and Caelyn’s twinkle that survives surgery after
surgery, Madlin’s desire to overcome her challenges, Erin’s gentle
servant’s heart – and Scott, the soul mate that God has chosen for me
to travel alongside in this road of life. When I awake in the morning,
my children’s (and my own) brokenness will still be there, staring me
in the face. But God will also be there, faithfully guiding me – and
when I can’t stand on my feet, carrying me. This is a blessed life,
and we will all arrive home someday with the scars to prove it.

“But He said to me, ‘My grace is sufficient for you, for my power is
made perfect in weakness.’ Therefore I will boast all the more gladly
about my weaknesses, so that Christ’s power may rest on me.” 2
Corinthians 12:9

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Responses

  1. What a blessing to come across your site while looking up “Hatchbacks shoes”. My daughter is not adopted, but has CP. I understand the “knife” feeling you describe so well. I look forward to new insights from your blog.
    God bless.


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