I first heard this beautiful story when I was with my friends in Oklahoma while attending a Woman’s Conference. My oldest son was diagnosed with high functioning autism at 4 years old, but that was finally a huge relief. Our struggles with him started at birth and those first 4 years were filled with many emotions and hardships. I wish I had heard this story when Davis was a baby. I believe it really would have helped me explain how I was feeling to my family who didn’t believe there was anything different about Davis. Gratefully, Jason supported every decision I made and we did everything in our power to help Davis develop those skill sets that he doesn’t have naturally.
In those early years, there were many moments where I wished Davis look disabled. Then in the grocery store instead of looks and words of irritation, hopefully I would have received looks of sympathy. Since we didn’t know what was wrong with Davis, I assumed (along with the rest of the world might I add) that I was a bad parent.
by Emily Perl Kingsley
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 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 guidebooks. 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.
I have turned my journey of a mother with special needs into http://www.executivehomemaker.com/. It’s basically a collection of everything that I made for Davis to help teach him and help with the consistency he so desperately needed to control his tantrums. At one point when Davis was about 4, I tracked his tantrums and documented that he was having a screaming, throwing himself on the floor, kicking his feet tantrum every 5 minutes! Yes, I said 5 minutes. No wonder I was a little crazy during that time period. Dylan was 2 years old and I don’t remember much of Dylan before he was 3. I was in survival mode.
I have had my many “mourning” moments over the years and I try to stop and feel those feelings completely instead of pushing them away quickly. For me it’s easier to acknowledge them and move on instead of trying to consistently deny them. I don’t expect them to go away entirely just like it says in the poem because I also “morn” over not having a daughter. I believe those are two of my many trials in life and I’ve made my peace with that. I don’t like it but I can live with it.
When Davis was 6 years old a very close friend of mine, who I admire for her heart and connection to others, gave me a framed copy of this poem. I can’t explain exactly how it affected me, but somehow it validated me in a way that my family was unable to. Here it is:
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 a child with special needs. Did you ever wonder how mothers like this 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, Matthew.
Forrest, Marjorie, daughter. Patron saint, Cecelia.
Rudledge, Carrie, twins. Patron saint… give her Jude. He’s used to profanity.”
Finally, He passes a name to an angel and smiles, “Give her a child with special needs.”
The angel curious. “Why this one, God? She’s so happy.”
“Exactly”, smiles God. “Could I give a child with special needs a mother who does not know laughter? That would be cruel.”
“But has she patience?” asked the angel.
“I don’t want her to have too much patience or she will drown in a seal 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 is not going to be easy.”
“This one is perfect. She has just enough selfishness.”
The angels 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’s to be envied. She will never take for granted a ‘spoken word’. She will never consider a ‘step’ ordinary. When her child says “Mama’ for the first time she will be present at a miracle and know it! When she describes a tree or sunset to her child, she will see it as few people ever see my creations.
“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 she is here by my side.
“And what about her patron saint?” asks the angel, her pen poised in mid-air.
God smiles. “A mirror will suffice.”
To print out a copy of this poem, click here. Bless those of you out there who know this pain and are stronger for it. I honor you.