So I recently found out that moms of children with Down syndrome get criticized for portraying only the positive side of our lives...that we glorify it. This struck me as odd. First off, why do others care how I portray Down syndrome? I wonder what people would rather me write. That my life is horrible. That we are hermits. We rarely go in public for fear of what others think. My "typical" children are neglected. They get no attention. We have to focus all our time on Hailey. We spend hours and hours at appointments and spend all our free time doing therapy. The boys are miserable and feel cheated because their sister holds them back. Would others like to read about sadness, depression, and the black cloud that lives over our world?
Newsflash...you are NOT going to find any of that here because it would be false and inaccurate information. I may live in the land of rainbows and unicorns, but I've always been honest. I don't want the world to believe that our lives are really like that because it is not.
Yes, I was sad when I first received Hailey's diagnosis. I had a little girl in the NICU and I didn't know what her diagnosis meant. I didn't know the basics of it all. I didn't know which direction to go. After breathing...and thinking...and praying...and researching, I realized the outlook wasn't grim.
Now, 18 months into our precious little girl's life, I am embarrassed at my initial reaction. I don't write that our life is miserable because it is not. We live our life the same as we did before we had Hailey...or wait...maybe we don't run quite as much, but it isn't because Hailey has Down syndrome...it is because taking all 3 children every where can get a bit chaotic! My boys do not lose out because of Hailey. It has opened a whole new world for them. I won't get into all the character lessons they learn right now. They actually get to do a lot of activities BECAUSE of Hailey. Cook-outs, swim parties, Christmas parties, the Buddy Walk, etc. I have very social children. They love being on the go. They love meeting new people and the opportunity to make new friends. Do I have a little less time to spend one-on-one with them? Yes...but show me any family that doesn't juggle that when having more than one child or having a new baby in the family?
Does Hailey have more appointments than the boys? Yes, but we are very fortunate. Right now we are in preventative mode. We keep her eyes, ears and heart in check. We have follow ups with those specialties to keep her in tip top shape to optimize her life and her learning experiences. But if you thought your typical child had fluid in his/her ears, wouldn't you keep up with audiology? If you thought she wasn't seeing, wouldn't you keep your follow-ups with ophthalmology? If your family had a history of thyroid problems, wouldn't you make sure your child had regular blood tests?
Does Hailey have therapy to help her with other areas of development? Yes. Don't I take all the kids to the boys' soccer practices...basketball practice...baseball practice...swim lessons. If therapy is similar to exercising, is it really any different than their practices and school functions? If she has to sit through all their stuff and we continue to do all their stuff, shouldn't they do the same? Isn't that you do when you are a member of the family?
Do we spend a lot of time doing therapy at home? Not really. It isn't much different than doing homework with the boys. We might have some structured play, but I did that with the boys when they were younger, too.
Are we sad...depressed? Don't get me wrong, I do get down from time to time because at this moment, Hailey is a little behind typical kids with gross motor. But I ask all parents, hasn't there been something that your typical child didn't do as well as other children? Haven't you gotten upset or sad about something with your typical child? Do I spend my days in despair? No!
I can say honestly that there is more laughter, more smiles and more love in our house than ever before. I truly believe Hailey completes our family. Each of us play a role and together we fit together perfectly. We have our ups and our downs, but show me a family that doesn't.
I've been told that Hailey's smiles and waves make people's day. That she has a smile that could stop traffic. That when she smiles her entire body smiles. These are people that don't get to see her every day. We are privileged enough to experience great joy and love from this beautiful little girl every day. Why would I portray her in a negative light?