Mitchell's Hands

The school year is coming to a close. And with that Mitchell's time at preschool is ending. It's been 2 great years. I'm always amazed at how the team of teachers, therapists and administrators support and engage with him. Plans for his start in kindergarten are already underway. We know who his teacher will be and most of his therapists will continue working with him.

A very special Mother's Day gift came home this week from Mitchell. It's his hand prints on a page with this poem. These past 2 years we've really gotten to know the teachers and I'm flattered they would take the time to make something so personal. They understand my heart.

Mitchell's Hands

When you look at me,

You will measure me

...by my awareness

...by my response

...by my age

...by my development

And you will find me lacking.

But for me, you are measuring

With the wrong cup.

For I have one possession

Which brims and overflows

Beyond all others.

I have my mother's love.

This cup she give me holds also her

...agony and helplessness

...waiting and hoping

...tears and pain

...aloneness and fear.

But in the end, all these are swallowed up

In the deepness of her love.

Which now, in the same moment

Both lets me go

And never lets me go.

So measure me, if you must,

But measure me too, with my cup

And you will find me

Full.

(Another) New Stroller

When I asked Chris to put together yet another stroller, he said, "Why do we need ANOTHER stroller?" Then I reminded him the wheelchair has been expanded and it is now over 60 pounds - it's difficult to get it in and out of any car, making it easiest just to leave it at preschool Monday - Thursday. But then we are without a comfortable, mobile seating arrangement for Mitchell during the week. I don't like that restriction. Not long ago I bought the largest stroller at Toys R Us I could find. After just a short time, Mitchell whimpers in it. So I bit off buying a "special needs" stroller. Know that putting "special needs" before anything triples the price. It has side supports, can handle a child up to 90 pounds and is only 22 pounds! It's big, but Mitchell stays comfortable in it for long periods. Yay!

Still don't know how to collapse it. I'm sure we'll learn. While it looks more "normal"/like a typical stroller which we love, there is one downside if you can even call it that. I have kind of gotten used to the seas parting when we try to navigate a wheelchair in public. People are always so eager to help us, especially if it's just me and the boys out and about. It's taught me to always offer help to others no matter if they are able to do something for themselves or not. Here's my sweetie in his new ride:

Special Needs Labels

I don't often say Mitchell is or has "special needs". It doesn't flow naturally from my tongue. A doctor once said, "He has special health needs" and I liked that much better. But being cynical, Mitchell doesn't have special needs, he requires TOTAL or COMPLETE needs to be taken care of! So you can see I'm often stumped at how to describe my son.

A mom who writes about her son's "special powers" and family experiences relating to his Cerebral Palsy echos this dilemma. She blogged:

“Special needs” just doesn’t sound cool, although out of all the terms, I tend to use it a lot because it’s the most recognized term. “Differently-abled” is cooler but harder to explain and I don’t always want to explain. “Disabled” emphasizes negativity, and “handicapped” just seems outdated to me.

I know, I know: Why are labels necessary? Sometimes, they just are. I don’t always want to say “Max has cerebral palsy”—vague terminology comes in handy for forms, special accommodations at places, nosy people.

I know it doesn't work for her, but I wind up using "disabled" the most when describing Mitchell. His inabilities are major. In specialist's terms, he's severely impaired. Saying he's disabled conveys he is not able. I might go on to say, he doesn't walk or talk and uses a wheelchair. Disabled also better focuses on his physical limitations, rather than his behavioral. Generally he's a pretty content little guy.

Speaking of Mitchell's behavior and personality, that's tough to describe too. It's hard to describe characteristics too specifically when there are no verbal and few movement cues as to who he is, but I've nailed that one when I say Mitchell is sweet, lovable and has a gentle spirit. I know those things are true!

I've found I'm most adamant when it comes to talking about visual impairment. Notice I did not say "blind". I have learned there are so many degrees of impairment, it's often incorrect to call someone fully blind. Mitchell has some peripheral vision although he can't process what he sees very well so I say he is visually impaired. I never shortcut when relating he receives vision therapy from the Cincinnati Association for the Blind and Visually Impaired.

I admit some of this is ego. It is very hard for me to accept or internalize my son being blind. I can't explain it. I've always been funny about sight though, very thankful for not needing glasses myself. I've boasted the only thing perfect about me physically is my eyesight!

I am still working through letting go of comments strangers make about Mitchell being tired when his eyes are half-mast, usually replying about his remarkably long and beautiful eyelashes. But it always seems to get a rise in me. I want to quip, "He can't see." That would only make them feel bad so I keep mum. Again, I'm working on it.

So if we must label, what works for me is to say Mitchell is disabled and visually impaired. But know other families likely feel differently so in my opinion it doesn't hurt to ask their preference.

The Special Mother

I'm having a good day. The boys took me to one of my favorite places - Nordstrom Cafe - for lunch. We walked a short while in the mall afterwards. While I shopped at Loft, Chris talked to a woman. From afar I thought it was someone he used to work with so I didn't bother going over thinking it was all bank talk.

Afterwards he told me she was a mom who approached him to talk about Mitchell and about her daughter who was similar to Mitchell and who passed away when she was 10 from intense seizures. Chris and this mom told each other of respective medical situations. Her second daughter Molly has 3 siblings. She was born premature and had severe CP, a feeding tube and other complications. More aware than Mitchell, she had no head control at all.

In hearing the conversation second hand, I wondered if this mom lingered talking to Chris on Mother's Day reflecting of her child who had passed. I was glad we landed there at that moment. Interestingly she confided in Chris what only fellow special needs parents can understand so easily, "When she was alive I prayed to God that he would take her so she wouldn't have to suffer, but since she's gone how I wish she were still here."

A good message for me on Mothers' Day too. I definitely appreciate my boys and know I am loved.

A re-post of an essay I like by by Erma Bombeck:

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."


Happy Mother's day to all the moms!

Mito Video and Health Prayer List

You may be thinking...how many Mito videos is Stacey going to suggest I watch? It's so hard to explain and understand Mito, sometimes a story helps.



In addition to Mitchell, there are a few other children we know who are coping with health issues. I wanted them to know I'm thinking and praying for them! I'm sure they'd appreciate your prayers too!

Adam - Our sweet friend who shares Mitchell's struggles with seizures. Adam's had 2 brain surgeries aimed at reducing their number and intensity. With results less than desired, doctors are suggesting a more dramatic removal of the area of the brain thought to cause the seizures. Praying for Adam's well being as well as the parents as they walk through this challenging decision process.

Madeline - You may not know Mitchell has a girlfriend in his preschool class. This darling girl is so quick to rush to his side and knows just how to get him to smile. My favorite story is about how on Valentine's Day she rushed into class, opens her arms wide and bellowed, "Happy Valentine's Day Mitchell." On Sunday Madeline was bitten by a friend's Akita-mix dog resulting in 50+ stitches to her face and jaw. We visited her yesterday and she's doing well. Praying for her face to be completely healed and free of infection.

Robert - Chris' cousin's son has been diagnosed with a brain tumor and is starting radiation treatment. We don't know too many details because they do not live nearby, but praying for peace to Robert and his family during this time and complete restoration of health.

Faith - This is a little girl who has both Mitochondrial Disease (Leigh's) and Down Syndrome. Her brother is affected by Mito as well. She's been having a hard time lately pretty much confined to bed. Praying for her ability and comfort to be improved and for her and her entire family to get much needed rest.

I would be remiss if I didn't add my mom to this list...

Kay - Has had continued back problems and an respiratory infection that won't go away. She's to stay off her legs and not be around people during the duration of her treatment. Not great timing with Mother's Day soon here. Praying for her symptoms to be alleviated and that she feels better soon.

"Behold, I will bring health and healing; I will heal them and reveal to them the abundance of peace and truth."(Jeremiah 33:6)

Welcome to Holland

This piece is very popular in the special needs community. In the past I didn't relate to it all that well - I like to travel and have never been to Holland. Wouldn't I like to go? But stumbled upon it once again while cruising the internet this morning and today it seemed to register. Sharing in case you may not have had a chance to read it yourself.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

End the Use of the R-Word

A movement to end the use of the r-word has been gaining momentum and today marks a national reminder for permanently ending the use of the word. I can relate. I recall having a terrible feeling I got when Mitchell was only 5 months old and an acquaintance commented on him saying, "I'm not going to lie to you...I think he's retarded." What an ignorant thing to say and an awful label to put on anyone.
R-word.org - Change the conversation...