Raising a Daughter with Down Syndrome

October is National Down Syndrome Awareness month. One of my dearest friends, Anne Reinertson, is the mother of a child with Down syndrome. In honor of little Regan - and in hopes of raising awareness - I am reposting Anne's guest post from last year about raising a child with a disability.

On October 7, 2005 at 2:32 AM our lives were forever changed when our beautiful daughter Regan was born. We were finally first time parents after years of trying to get pregnant. We were also soon to learn that we were parents of a child with Down syndrome.

The happiest day of our lives turned into one of the most confusing days of our lives. My heart dropped to my feet. We knew nothing about Down syndrome. The image that came to my mind upon hearing those words was that of a silent little girl sitting in a corner, rocking back and forth, unable to speak or interact with anyone. I thought, "Oh my God, my life will never be the same. I am going to spend the rest of my life taking care of this child. I can't ever have another child. How am I going to manage just this one child???"

We just wanted our daughter to be healthy, happy and able to lead a fulfilling life, and we didn't know if that would be possible for her now. We new nothing about all the potential medical problems and never met so many doctors in one day. Thankfully Regan was born with no congenital health problem, which is very common in children with Down syndrome.

Having a child with a disability is nothing like I expected it to be. When you have a child with Down syndrome, life is very challenging and overwhelming at times and at the same time extremely rewarding. Some days I am so full of pride and joy at my special daughter that I feel like I will burst with happiness. Some days, I just want to close the door behind me and have a good cry...and I am learning that it is OK to do so, too.

When Regan was a little over a year old, I became pregnant again. Our daughter Lauren is now almost 3 years old and was born with no developmental disabilities. I sometimes find it hard to balance my daughters' successes and give them equal billing, because I know it takes Regan so much more work and effort to reach her milestones. We expect Lauren to hit every milestone. With Regan, you have to wait for it, then you can move on to the next one. Lauren walked at 12 months, talked in sentences by 2 ½, can count to 5 and is trying to write her name. Regan walked at 2 ½, we are still working on counting to 5, and her speech is severely delayed.

When Regan did walk, we CHEERED! With Lauren, we also cheered but it was a little softer. We do our very best to treat and raise them the same because we think that is very important for both girls. Lauren is already starting to notice some differences between her and Regan and actually tries to help her big sister. Having a sister with Down syndrome has forever changed Lauren's life, in a positive way. She will grow up with empathy, an acceptance of others and a helpful, giving spirit, all because she was blessed to have Regan as a big sister.

Our lives are more like other typical families' lives than it is different. The girls fight like any sisters, and lately I have been finding them giggling together and suddenly stop when I enter a room. The are like any other siblings. It is important to us that our girls know that Regan is Regan, she just happens to have a disability it doesn't define who she is. I will ALWAYS instill that in her, and hopefully in all the people that touch her life.

In her short life, Regan has already touched many people's lives, especially mine. She has taught me to not to be the 'planner' that I once was, to take life one day at a time, and to not sweat the small stuff. I feel constantly compelled to advocate not only for Regan but for ALL children and adults with disabilities. I go the extra mile for everything in her life, and I mean EVERYTING.

I've been a member of the special education PTA at Regan's school since she was 3 years old. I am also very involved with the Down Syndrome Association as a parent support volunteer. Letting other parents know that they are not alone in their journey is very important to me, because I know how difficult this road can be when you are traveling it unaccompanied.

Our family and friends are so supportive. My husband is my rock and always makes me feel better when I get upset or feel overwhelmed. Regan is such a Daddy's girl! I am so proud of my two girls and couldn't imagine not having them in my life. It's funny to hear myself say this, but I couldn't imagine Regan without her disability. She wouldn't be my sweet little Rae. 

 

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  • Dear Anne,
    Thank you for your very eloquent, sincere and touching post. I've always thought that parents of kids with development needs are very special people. I don't know if you know about Kiki's Playhouse. It's for children with down syndrome and their families and it was founded by a Mom just like you. It's an amazing support center for parents and a place where all children feel welcomed.

    Thanks again for being a part of Ay Mama!

    Ana

  • Oh and your girls are beautiful!

  • Great article , Anne, the girls are great
    Papa

  • Great post, Anne! You are one of the best moms I know, and Regan & Lauren are such beautiful, vibrant, special little girls. I am so glad you agreed to guest blog! :-)

  • This really is a special post, Anne! Very genuine....heart warming. Your girls are beautiful- just like their mom- and you have done a real good job sharing about your lives.

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