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Category: Down Syndrome
Babies with Down Syndrome are often signifigantly delayed when it comes to meeting all of those baby milestones. It is hard as a mom to see other babies around my daughter’s age and not say “oh she/he’s crawling, talking, standing etc.”
Little Miss will be 7 months old and has just mastered the art of holding her head up while on her belly and rolling over from back to tummy and tummy to back. She is doing really well for a baby with down syndrome according to the Physical Therapist, but it is still really hard. I sit and think when will she crawl, when will she stand, when she will walk. I know that she is doing the best that she can for a little baby who has been through all that she has been through. She will do all the things that other babies do, just in her own time. A friend sent me this creed that put it all in perspective for me.
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’m 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 must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace
People with Down Syndrome have their own unique talents and abilities just like everybody else.
I worry a lot lately, I worry about her, I worry about me, I worry about my little family, all the what if’s go streaming through my head while I lay awake at night. I am a worrier, it’s just what I do. But I look to other people’s success stories and triumphs to get me through the tough times. I hope that my blog does that for at least 1 person. Hope everyone had a wonderful day.
Children with Down Syndrome are often fully included in social and educational settings and often go onto graduate High School and attend post secondary education programs. Celebrate these achivements on March 21, National Down Syndrome Day.
When I first had my daughter I worried and still worry about so many things, will she be accepted, will other kids be friends with her, will she talk, will she walk, will she learn, will she know things, will she fit in, what kind of person will she be, what kind of relationship will I have with her, will she want to do things that other little girls like to do with their moms. It helps me so much to see all the stories about kids with Down Syndrome who go on to live wonderful, fullfilling lives. Won’t you help me spread awareness about Down Syndrome, follow and share my blog.
Visit http://ndss.org/ to learn more about Down Syndrome.
World Down Syndrome Day takes place March 21st every year. The date 3/21 represents the 3 copies of chromosome 21, which is unique to people with Down syndrome.
I thought I would use the next month leading up to March 21, 2012 to talk about Down Syndrome and give you all a look inside what this disorder is and the impact it has had on my life and the lives of so many others.
So read my blog and spread the word about Down Syndrome.
* Did you know that 1 in every 691 babies are born with Down Syndrome and 80% of these babies are born to mothers who are under the age of 35.
When I had my daughter I was under the assumption that only women who had babies past 40 had babies with Down Syndrome, I never knew it was even a possiblitly for me. But she certainly proved me wrong and has enlightened me and taught me so much so far.
Help me raise awareness about Down Syndrome and celebrate my daughter and people with Down Syndrome this March 21.
Someone asked me the other day why do I blog, don’t I find it tedious, why would I want to let people know that my child has Down Syndrome, aren’t I embarrassed? When I had my daughter the first thing I did was go to the computer to try and learn as much as I could about Down Syndrome, I wanted to know everything. To my surprise I found out that 90% of Down Syndrome babies are aborted, 90% that was astounding to me. Then I looked to find people who were raising kids with Down Syndrome and I saw how happy they were, how lovely their kids were. I knew how much happieness and joy my daughter gave me and continues to give me each and everyday and I thought if people could see that maybe they would think twice about aborting such a special, wonderful child. So when people ask me such questions, I usually don’t answer them but this one I felt the need to answer, I am not nor will I ever be embarressed by my child, she is pure love and joy and I hope by reading my blog you can see that.
I also blog for other reasons, I love to write, it is my me time, when I can just sit down and write whatever I want for a few minutes of the day. I use it as somewhat of an outlet, I enjoy helping people, giving advice, sharing information, talents, recipes, etc. So I hope that you all enjoy reading it as much as I enjoy writing it.
So today I was reflecting on how much in my life I have to look forward to. I thought about this as I had a celebration at the kitchen sink today as I dumped all of Leah’s heart medications down the drain. I am not sure what I felt at that exact moment, I do know I was fighting back the tears. I wanted to thank God, thank Jesus, thank the doctors, and hold my baby girl close. I was hanging onto these bottles of medicines, I am not sure why exactly. She has been off all medications for a couple of months now, so I thought it was definitely time to get rid of them, when something becomes such a constant in your life it is hard to let it go I guess, the constant what ifs, what if she needs the medicine, don’t throw it away yet. The words of the cardiologist were echoing in my head as I watched the orange liquid swirl down the drain, “your baby’s heart is perfect, she has no restrictions, treat her like a regular baby with a regular heart now.” She seems to be doing so well and I am so thrilled that all the modern medicine in our world today saved her life. Time to move ahead, looking forward to making more memories with her and not letting the negativity in my life bring me down or at least try not to.
It snowed yesterday, I kind of like it when it snows on the weekend, when my husband doesn’t have to drive in it. It is nice to spend the day together. My son got to play in it for a few hours with Daddy and I spent time with my little munchkin. She is doing better and better everyday, she just amazes me, she went to the cardiologist last week and he said he didn’t have to see her again for another 6 months, this was the best news ever. He said her heart was perfect, she could be treated just like a regular baby no limitations, my husbnd and I were thrilled beyond belief leaving the doctor’s office that day, so hard to believe where we are now, compared to where we are now. I remember a very wise friend telling me, months from now you are going to wonder how the hell did I ever get through that. We did get throught it, but we did it together as a family, we held on to each other, and never let go and here we are today. Amazing how things happen in life, just when you think you’ve hit bottom there is a life preserver floating at arms length for you to grab on to, I guess if you don’t lose focus, don’t lose your grip you will pull through, if you lose sight of what is important you will lose, your grasp, lose your way.I am happy that I held on tight, held on to the hope that she’d be okay, because today she is better than okay, she is fabulous and if we got through heart surgery we can get through anything. Through all of this I can not forget how wonderful my son has been through it all. He amazes me with his strengths and talents each and everyday. I know how hard all of this must have been for him to go through, but he was such a trooper and I am so proud of him.
We’ve come such a long way and there’s no looking back now, onward and upward. I am looking forward to doing all the things we can as a family, together.
I have thus far treated my baby girl just as that, my baby, my little girl, my happy little angel. The Down Syndrome hasn’t even really been an issue to me. Her needing heart surgery was the hurdle we had to overcome and then we would deal with everything else. So what is everything else you ask? Well I am still trying to answer that question for myself. Am I in denial that my baby has this disorder? Some might say yes, some might say no. For right now I just feel like she is my baby girl no different from my little boy. I guess we have not really ventured out into the world as of yet so I don’t know how the world is going to react to her and that frightens me. I just want to keep her in my arms safe and warm forever, but I know that is not possible. Everyone that meets her, has fallen in love with her, has been taken in by her happienss, by her bright almond eyes and her cheery smile. She is only 5 months old and can light up a whole room, with her smile and her giggles.
I do not know what Down Syndrome has in store for us, but so far she is doing remarkable. She is gaining weight, rolling over, cooing, laughing, holding things, doing a lot of things they said she may never do or not do until she is much older. She is determined, she is happy, she is sweet, she is my baby and I guess that is all that really matters.
Sometimes I sit and wonder though, am I doing enough for her, what else can I do, what else should I be doing? Is Early Intervention enough? Should I be doing more? I know she is still so little, sometimes I think the more I do for her the better off she’ll be.
There is an essay they give you when you are in the hospital and have just given birth to a baby with Down Syndrome, it’s called Welcome to Holland by Emily Kingsly. It is a beautiful essay that describes what having a special need child is like. You plan this fabulous trip to Italy(plan to have the perfect baby) but when the plane lands the pilot announces “Welcome to Holland.”(having a baby with Down Syndrome). It’s not what you wanted, not what you imagined it would be, you think you will never be able to do it, never be able to understand, but then you realize all of the wonderful things about Holland, the windmills, the tulips all so breathtaking, just like you realize what a blessing your child with Down Syndrome is.
My husband and I read this when we got home from the hospital with our daughter and it was so helpful and enlightening to us both. Last night my husband gave me a gift, probably the most wonderful, most thoughtful gift he has ever given me. He said it was a late Christmas gift from our daughter. It was a windmill charm for my bracelet.
This gift was so wonderful, so thoughtful and I will cherish it always because I am more happy and thrilled to be in “Holland” than I ever thought or imagined I would be.My baby girl is 4 months old and has been through so much. She is my hero and I am thankful to be her mommy each and every day.So my little girl is thriving, she is getting so big and is eating so much more. She tries to roll over, she doesn’t quite make it all the way over but she is getting there. She tried cereal for the first time today and I think she really liked it of course more ended up on the bib than in her mouth but that’s okay. She had to get shots, I hate to see her in pain like that but I would rather her cry now than to get a terrible disease. As I saw how big she got today at the pediatrician I thought back to when we were in the hospital and never thought we would get here. Everyone kept telling us that we were going to look back on that experience and wonder how in the world we got through it. I am reminded of all the wonderful doctors and nurses that we encountered each and every day.
