Welcome to Holland

Welcome to Holland

"I am often asked to describe the experience of raising a child with a disability, to try and 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.

"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.....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 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."

BRITTANY

I reached out to other moms I know who are experiencing a similar journey of mine, raising a child with Down syndrome, and asked if they would want to share their story.  Here is what one mom wrote:

Many people do not know that when I was in high school I spent ALL my free time with the special needs class.  I would go in early to meet them as they were getting off the bus.  I would spend my lunch hour with them, and any free hours I had during the day.  I would arrange for them to come to the gym and watch me and the rest of the guard practice.  I did this for 2 years.....I loved being with them so much, that I had decided that I was going to be a teacher to kids with special needs.  

When I graduated high school, I wasn't ready to go to college, so I took some  time off to just work and spend my time with my now husband, Mike.  We got married two months before I turned 21, and when we found out I was pregnant, we were thrilled!  Since I was only 21, the doctors had no reason to test me for anything.  I did have the Alpha beta protein test, which tests for spinal bifida and Down syndrome.  Everything came back normal.  I wasn't due till the end of June of 1990, but at the end of May of 1990 I came home from work in a lot of pain.  My husband, Mike, ended up taking me to the E.R. and I had to have my appendix out.  I was 8 months pregnant at the time.  They were able to do the surgery without doing any harm to the baby.  My doctor did tell me that coming off the pain medicine may kick me into early labor, and 3 days later, still in the hospital waiting to go home, my water broke!  We found out that our daughter was breech, so back into surgery I went.  On May 28, 1990 at 5:50 A.M. Brittany Renee was born!  She was 6 lbs and 8 oz and 20 inches long......and 4 weeks early!  

The doctors knew right away that Brittany had Down syndrome, but the family didn't want to believe it.  I think my husband took it the hardest.  Taking off out of the hospital to walk around the whole thing.  The doctors wanted him to tell me when I woke up, but he just couldn't.  When I finally woke up, they told me, and I remember looking at them and saying, "ok, what do we need to do?"  I knew from spending my time in the special needs class at school that this was NOT a death sentence.  I also knew that the Lord had sent her to us to take care of her and raise her, and that we had a job to do.  Not one time have I ever questioned Him.  

Riley Hospital came and got Brittany by 11:00 A.M. and everyone, except my husband, went with them.  He stayed behind to be with me since I was still recovering from 2 major surgeries in a week.  I think he really needed me by his side when he did get to go up to Riley, which didn't happen for a week.  While I was still in the hospital, my doctor came in holding my chart saying, "I just don't understand how she could have Down syndrome.  The test came back normal."  I just shrugged my shoulders and said, "It's ok."  

Now it's not been a bed of roses, but it's not a death sentence either.  I would not change a thing that I have done, where my daughter Brittany is concerned.  

Fast forward 22 years, the year is 2012.  Our little Brittany is all dressed up in her cap and gown sitting in the "green dome" with the rest of her high school senior classmates.  The principal gets up to make his speech, and he starts out talking about how everyone has their own hero.  They may be a movie character or in a comic book, but his hero delivers the newspaper to his office everyday with a smile on her face, that makes his day.  By this time, I was in tears.  I knew my daughter delivered the newspaper everyday to him, because she would always come home talking about it.  She loved it!  He continued to talk about how the doctor's didn't give her much hope of living when she was born.  How she had been through a couple of surgeries and was in a wheelchair for a while due to one of her surgeries, but TODAY , she was going to walk up the stairs, and across the stage, to get her diploma.  After he was done, he looked at Brittany sitting out there with her classmates, (I'm fighting back the tears writing this)and everyone in the green dome jumped to their feet and gave our little Brittany a standing ovation while they were wiping their own tears.  Graduation went on, and when it was Brittany's time to walk up the stairs, and across the stage, I was in tears again.  When they called her name, the entire senior body stood once again, followed by the audience, and she received another standing ovation!  I was totally shocked that these young people showed our little Brittany so much love that day.  I can say that at least 50% of the audience did not know Brittany, but it didn't matter.  That day, in 2012, it was Brittany's day.  A day I will never forget.  

- Renee
(Brittany's Mom)  

Selfie Sunday....mom and sister

The Creed of Babies with Down syndrome

The Creed of Babies with Down Syndrome

My face may be different, but my feelings the same

I laugh and I cry and I take pride in my gains

I was sent here among you, to teach you to love

As God in the heavens, looks down from above

To Him I am no different, his love knows no bounds

It's those here among you, in cities and towns

That judge me by standards, that man has imparted

But this family I've chosen, will help me get started

For I'm one of the children, so special and few

That came here to learn, the same lessons as you

That love is acceptance, it comes from the heart

We all have the same purpose, though not from the start

The Lord gave me life, to love and embrace

And I'll do as you do, but at my own pace

- author unknown   

Wabash Valley S.T.A.R.S.

Receiving any kind of diagnosis for your child can be scary.  People are typically afraid of what they don't know.  For me, I can honestly say that I don't think I had ever met a person with Down syndrome before my daughter was born.  And I find that very sad.  How did I go 28 years and never meet a person with Down syndrome, or really never have much interaction with people with intellectual disabilities?  Looking back, it's hard to understand how that even happens.  Today, everywhere I go there are people with intellectual disabilities.  Adults working in the community, kids going to school with my kids, families out eating with each other......the list could go on and on.  So how did I go most of my life never experiencing life the way I am experiencing it now?

When Sophia was 7-8 months old, I was put in contact with a local mom, who had a son with Down syndrome.  She invited me to be a part of a local group called, the Wabash Valley S.T.A.R.S. (striving toward acceptance, respect and support.)  Wabash Valley S.T.A.R.S. is a play/support group for parents, caregivers and families who have a loved one with Down syndrome.  Going to that group that day, 4 1/2 years ago, was one of the best things I ever did.  It gave me a chance to meet some incredible families, who have helped me along this journey.  They have given me support, advice, and a shoulder to lean on when I just needed a break.

I value the friendships that I have developed with people from our support group.  Walking down the road of special needs isn't always easy, but it's always been worth it.  As parents who all have a child with special needs, we can relate on a whole other level than with parents who don't know what it's like to raise a child with developmental delays.  These women for me are my safety net.  Whether they are walking ahead of me, beside me, or behind me, we are all in this together.  When it feels like the world is against you some days, it's nice to know your always have someone who understands.

But being a part of the Wabash Valley S.T.A.R.S. has not only benefited me, it's impacting my entire family.  My girls are going to grow up knowing that just because people are different from one another, doesn't mean that we treat them with any less friendship or respect.

I grew up being a little intimidated by individuals with special needs.  I felt uncomfortable if I couldn't understand what was being spoken to me.  I felt awkward if someone displayed actions that weren't considered "socially acceptable".  Those were MY issues, not anybody else's.  My kids are learning that things don't always happen the same way with every person.  We all look different, and sound different, and act different......and that's ok.

**You can find Wabash Valley S.T.A.R.S. on facebook and get information about upcoming events!**              

I Have Down syndrome.....Know Me Before You Judge Me

**This post was originally written on 3/3/2011**

"its whats on the inside that counts"

I came across another GREAT article that was published in National Geographic for Kids and wanted to share it with my readers!  Click HERE to read, I Have Down Syndrome--Know Me Before You Judge Me.

Wordless Wednesday.....Cute and Crazy