Part Two - Raising a Daughter with a Disability

Yesterday my friend Lucy shared part of her journey as a mom of a daughter with a disability. Catch up with us HERE if you haven't read part one! You don't want to miss it.

Lucy also reminded me of our time together in Amsterdam, when we would sneak away after all the team was asleep and raid the community pantry, to eat the yummy windmill cookies! My memory was a bit sketchy on the details of the raids, but I DO remember the windmill cookies. She said the team leader eventually confronted our missions group about the disappearing cookies, and she and I sat there with very concerned looks on our faces, waiting for the culprits to surrender! I guess we fessed up later on, and our team leader did not share our humor. Oh well. Look what I found!! A picture of our cookies!

 Back to the good stuff, Lucy's story.  Yesterday she shared details of the discoveries, the difficulties and the progresses that they faced the first few years of Hartley's little life. Today, Lucy continues with some candid thoughts:

"I can’t help but question God. I don’t know His plan. I don’t know where He is taking us. I don’t know how many more valleys we will travel or what kind of mountains we still face. But I do know that He is still with us. Guiding us. Leading us. Carrying us at times when we are too weary. I can tell you that I feel much more equipped to conquer this with confidence and assurance that the other side of the mountain is a reachable and attainable goal. After all, we are all on a journey, just at different points on the map."

Some tips from Lucy for moms who may share similar experiences:

1.  Feelings: what to expect. 

Every parent is different. But after a diagnosis of disability, it’s common for parents to feel:
  • confused and overwhelmed
  • shocked
  • disbelieving or numb
  • denial
There is no right or wrong way to feel, just allow yourself to deal with whatever you may be feeling.

2. Comparison-
Although it’s hard, avoid comparing your child with other children. Every child is an individual.

3. Celebrate -
Celebrate your child’s successes and milestones – and focus on positives and progress. Your child might be developing differently from other children but will be reaching her own goals and milestones along the way. There will be lots of reasons to feel positive.

4. Focus -

Take time to just enjoy your child without focusing on the disability. With time you’ll get better at doing this.

5. Hold onto inspiration -

During our journey, this piece by Emily Perl Kingsley was introduced to me. I love it. Just about sums it up.

photo credit: www.tripsite.com

"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."

(this is Holly now- Beautifully said.
I kinda love that the summer we spent together was in Holland.
Holland was amazing.)

This poem gives such great perspective, makes me teary. It helps me understand. It gives sensitivity.

Special thanks to Lucy for sharing her story on 5 Things. I love that God equips us as we go, as only He can. Pass this along to moms who may need some of her encouragement! 

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  1. Thank you so much for sharing. I know exactly who I want to share this with.

    1. I am so glad to know that you will be passing it on to a friend.

  2. Love these posts... love the poem...


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