“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Friday, March 9, 2012

The Impact of DS

I have read a whole lot of blog posts over the last several weeks about new prenatal screening tests and what those mean for the DS community. We're scared. Not necessarily of the test itself, but of how this test will impact the already dwindling numbers of new babies with a little extra being brought into this world....Personally, I am not against the test itself. But I DO have concerns that when faced with a positive result and a medical community that too quickly jumps on the "pursuit of perfection" bandwagon, more expecting parents will jump to the conclusion that their best option is to end the life that already exists. It makes me heart sick.
This month brings with it World Down Syndrome Day, the first since being acknowledged by the UN. In honor of this very special day (the day that 1 year ago I finally reached my tentative arms out to the DS community), my plan is for every post I do for the remainder of the month to be directed towards new parents. I am hoping against hope that my words and the pics of beautiful Liddy will touch a chord in those parents' hearts and allow them to see that although this journey may not be the one they imagined starting out, it is a journey well worth taking anyway.

Over the last three weeks, I have sent out a whole lot of copies of the questionnaire I created for my MGR project. As I started reading through the replies sent back to me, I was inspired anew by the stories and wisdom which filled my inbox.  These words, written with love and care by other mamas, are simply too important to be filed away and hidden from the rest of the world. So...guess what. Those testimonies are going to be popping up right here over the next few weeks as well, starting tonight......

I asked these moms How has having a child with Down Syndrome changed your life? These are their replies:

Honestly, the only major adjustment I've had is going from having one child to two children. Andy is our second child and has made us a family of four. He is as charming as our older son and brings much joy to family and friends. We have become a part of the local Down syndrome community and have networked with families all over the world through Facebook and Babycenter.com.~Kathryn

Claire has opened our eyes to a whole different world we did not even know existed.  We have met so many different wonderful people that we would have not met.  My views of people with special needs are completely different.  I feel I am a more compassionate person and will see things in a different manner.  She has also brought our family closer together.~Amber

 He has made both the lives of my husband and I so much better, and brighter.  He has opened us up to the world around us and helped us to see the bigger picture.  He has filled our home with laughter, joy and love...and quite honestly he is exactly the son I imagined before I had him~Tonya

Tonya and Camden
 Our life has changed for the better. So much joy.  We have learned and experienced so much over the past year, gained many new friends and are now so much more appreciative in what our typical son is capable of.  Our outlook on life has changed and we are changed people, for the better. ~Shana

Shana and Gage
Wow, how has she not changed my life should be the question. Before Emily, the only things I knew about Ds were the stereotypicalH things most people know. I am not proud to say that  I associated it with a flatter face, shorter stature, and an overall slowness to the person. Hearing those words, "your child has Down syndrome" scared the life out of me. I wasn't the "type" to raise a child with a disability. These were the thoughts racing through my head five minutes after having my entire world change. I then looked down at the beautiful angel in my arms and realized that she was perfect, that I was the type of person to raise this beautiful little girl, and that I would NEVER ask "why" again. Having Emily has taught us all that it really is about the journey and not the destination. Emily didn't sit up until she was almost a year old. She spent the first year of her life in and out of hospitals for one thing or another. She didn't start bearing weight on her legs until 18 months old. She took her first real steps at just shy of two. As a  mom of seven others, all of whom walked well before ten months old, it was most assuredly a slower pace, but it was Emily's pace and that was all that mattered. She would get there in time and she taught me to sit back and enjoy the ride instead of thinking about the end destination.~Ange

Ange and Emily
 Eugenio has changed each person that is part of my family. He has thought us so much, he changed our entire world. He introduced us to a new world that I didn’t have an idea it was out there. I have meet so many great people that if it wasn’t for him I don’t think I would of have the chance to meet them. I think the most important is things I have learned from him is: that I became a better person, to understand and believe in others, to appreciate each moment and each little thing that he and my other two kids do. And I think the most important to understand and respect everyone’s way to be. ~Adriana 
Adriana and Eugenio
 He brings so much joy to everyone, especially his sister. They are amazing together and have a bond I never did with my siblings. He has definitely opened our eyes to not taking things for granted, like baby milestones. He has brought us together with so many new and amazing friends in the Ds community. He makes me thankful for our health and more cautious about spreading germs to others. He has made his sister automatically accepting of kids who are different. He has made me want to be a better, healthier parent knowing that he may rely on me for certain things his whole life. He has opened our eyes to other special needs adoption situations and that we may pursue in the future. We weren't sure he would be a fit for our family, but now we can't imagine our lives without him.~Kristin

Kristin, Steve, Piper and Max
 Jarrett is one of the best things to happen to our family!  He makes us appreciate every step of a journey; to celebrate all accomplishments no matter how big or how small.  He works so hard and has such perseverance.  He makes us laugh every day--I love seeing him try to keep up with his brother.  Anything Jackson does, he wants to do too--that provides such motivation to him!  Every one loves him!  They are drawn to his precious personality--he is such a social butterfly!  He attends preschool 3 days a week and is such a hoot while he's there!  He thinks of all the big boys are like Jackson--he gets in there with them and doesn't hesitate!  :)  His teachers love him and his therapists do too!  We love him!  He provides such joy and laughter to our family!  His cackle is music to my ears! ~Jill

I am much less self centered, like most mothers I guess. I am totally in love with every child I meet as always, but our little ones with "a little something extra" totally make me happy. I will stalk strangers just to meet them!~Kimberly

Kimberly and Grace
  I have become an advocate for my daughter and for others with DS and other disabilities.  Piper is our 6th child with special needs, but this need to advocate and change the world is unique to being her mom. Our immediate family has grown closer...her siblings adore her and will do any thing to help her, or to help us help her.  I have become a researcher, educating myself and questioning the experts.  We have changed our eating habits - focusing on good nutrition...organic foods, etc so help maximize her health.  We are starting a not-for-profit to help make a better future for Piper and others with DS.~Kristi

Kristi and Piper
 She has brought joy - and perspective.  We have redefined success, and I feel like we are better people for it.  We are enjoying and celebrating the small things, cherishing our time together, and definitely laughing more.  We are going against the grain of the ME culture we live in - and that is a good thing. :)  My husband added that he is much less concerned with what people think about our kids (not trying to compete with everyone else) and we have healthier expectations of all our kids now.~Lisa

 Having Owen has been a blessing in disguise.  My husband and I prioritize so much more--is it worth it to have X, Y, Z in our lives?  Do we really need this or that?  I personally have learned to be more patient and seek out help from others, which has always been a struggle for me.  I have learned a lot about time management too!  I think I probably would have done or learned these things regardless of his diagnosis, but I've really had to stretch more because of him having DS.~Stephanie

 She has brought so much joy and happiness into our life! My family was not so close before I had Paige – everyone fighting with everyone very stressful – But I truly think that Paige has brought us all closer, not sure if it is because she was born with DS or just something so sweet how could you go on fighting?? The first couple of months that she was born was hard to get through but now that she is 10 months old, life is just how we wanted it, a loving family of 3!! ~Terra

Terra and Paige
 He was not what we were expecting, we have learned a lot about Down Syndrome and also have learned to have a more positive outlook on life because of him. We cheer him on with every accomplishment he makes no matter how small. We have also learned that regardless of the fact that Rylan has Down Syndrome we would not trade him for a typical child because we believe this is the child we are supposed to have, and that we love him more than life itself.~Els

He has taught me to be more patient than I ever knew I could be, to take the time to appreciate every little thing and take nothing for granted, to never give up trying (he doesn't), and to smile even when things are tough.  He has also taught me to be more understanding of those that may not be like everyone else...and to appreciate what it is that makes them different...this is something he has also taught other family members. ~Cathie

I have become a different person. A more selfless person. I am more aware of those struggling or those that are different. I have met people and befriended people I would have never known. I have conversations I would have never had. My faith in God has grown stronger. My admiration for Him deeper. I have become an advocate for Down syndrome.~Shannon

Shannon and Fiona
She has impacted our lives profusely.  I was always the girl that said I could never raise a child with a disability.  I was close minded and uncomfortable around people that had some type of special need, it wasn't what I would have chosen for my child.  Now I am living the life.  I am head over heels in love with my daughter and the extra chromosome she carries.  She is perfectly made.  Through her surgery & my pregnancy I developed an intense faith.  I have a true deep understanding of having a relationship with Christ.  I am more patient.  I take nothing for granted.  We work HARD for every.single.milestone & we celebrate them big!  I used to assume that special needs meant no big dreams or goals, but now that I am a parent to a child with special needs I realize that I do have big goals & dreams for her, just as much as I do for my typical children.  She has utterly changed every aspect of my life for the better and I am thankful because I am a much more caring, compassionate, understanding, and whole person because of her.~Annie

Annie and Ollie



Yes, I read every single comment and I love them all! Please leave us one (and imagine me doing a happy dance when I see it!)