Inspiration

Welcome to Holland

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.

My Daily Life with SMA

By: Jenny Larson Imhoff

Something similar to this was recently put together by another mom of a child with SMA, and boy does it hit home! I have adapted it a bit to fit us.

I LOVE that I am lucky enough to be the mommy of such a special and incredible child.

I hate having a life that revolves around SMA.

I LOVE that Reagan is smart, spunky, beautiful, and outgoing.

I hate that my Reagan's body isn't nearly as strong as her mind or her spirit.

I LOVE Reagan's strength and admire it EVERY day.

I hate having to explain to her why she can't walk, why she has to have a feeding tube, why she has

to be on BI-pap, why she had to have titanium rods put in her back, why she has to go to OT, PT and

Speech multiple times a week, and why she has to have another poke.

I hate hearing my little girl explain to other kids that she has SMA and her muscles don’t work and that is why she can't walk.

I LOVE being strong enough to fight for my daughter.

I hate always being so tired.

I hate always feeling obligated to be Reagan's advocate when I really just want to be her mom.

I LOVE that we can give Reagan a good life.

I hate not being able to take my daughter to 'regular' parks and playgrounds.

I hate that Reagan can't ride roller coasters and water slides- because I KNOW she would LOVE it.

I hate how much time SMA takes away from doing fun things.

I hate worrying about my daughter's future, and who will take care of her when she's older and we can't.

I’m so grateful for all of the fundraising efforts for research that provide hope for a cure.

I am devastated every time I hear that a child with SMA has died.

I hate the thought that my Reagan has a disease that kills and will probably kill her unless a cure is found.

I LOVE that most people we have come across are compassionate and will go out of their way to help us. These people have been SO very helpful in our lives.

I wish people wouldn't STARE!

I hate people who park on the hash marks where a handicap ramp is suppose to drop from the van.

I hate people who talk down to Reagan and feel sorry for her.

I hate it when other parents don't let their kids approach Reagan, play with her, or ask questions.

I wish I didn't have to explain all the time "what's wrong" with my Reagan.

I'm scared that Reagan will be seen as an easy target and be victimized since she can't fight back physically.

I LOVE the extra hugs I get from Reagan when we transfer her from one place to another :)

I wish people wouldn't tell me how lucky Reagan is to ride in a powered wheelchair. Maybe they are trying to "break the ice" or don't know what to say, but still… It's lucky they can walk.

I hate when my Reagan cries because another person has told her she can't do something because she is in a wheelchair. Seeing that look of devastation in her eyes crushes me every time

I LOVE that Reagan has wonderful family and friends who are accepting of her and love her no matter what.

I hate when people bring their kids over when they are obviously sick, and risk infecting Reagan, potentially resulting in a hospital stay or worse…

I LOVE my new friends who have helped me because of SMA.

I hate having to put on a happy face and pretend everything is okay.

I LOVE that Reagan has a team of doctors and therapists who are fighting as hard as we are.

I hate knowing that whatever I do just may not be enough.

I hate having a house full of medical equipment and supplies.

I hate hooking Reagan up to machines and tubes every night even though it doesn't seem to bother her.

I hate equipment alarms.

I hate the smell of Vivonex.

I hate insurance companies that either deny payment for equipment or make us wait months for what we need.

I hate the thought of Reagan being hospitalized for surgery or because she is sick.

I LOVE LOVE LOVE that I am able to overcome all of the "I HATES" on a daily basis with my strength and the help of wonderful family and friends!

Thank you!!

I Am The Child

Author Unknown

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom…oh…I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

You often pity me, I see it in your eyes. You wonder how much I am aware of--I see that as well. I am aware of much--whether you are happy or sad or fearful, patient or impatient,

full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater...

What I give you is so much more valuable--I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you futher than you would ever go on your own, working harder, seeking answers to your many questions with no answers...

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving.

Most of all I teach you hope and faith