Giving Back

Dear Family and Friends,
 At 11:01 pm February 24, 2010, I was blessed to hear the cries of my daughter a little less then two years ago. I'll never forget that moment, not only because I became a mother, but because she changed my life forever. She taught me about love, about the type of love I never thought I was capable of giving. In the beginning of our journey I never thought I could be the mother of a child with special needs. I didn't think I was strong enough, that I knew enough, and honestly I assumed that my life was over. As you all know I was very wrong. I'm so privileged to have her in life, to have her teach me everyday that the only limits a person has, is the limits they put on themselves. I'm writing this email because there is no way I could have become the parent I hope I am if it wasn't for you guys. Your acceptance of her without hesitation is not something Adrian and I have taken for granted. Even as we hesitated, as we cried over what we thought we had lost, your unwavering love for her (even those who had not met her yet), was what we drew strength from. I can't tell you the amount of stories I have read of the parent's families not accepting the child, or the family turning their back on the parents; I am truly grateful and blessed to have each and every one of you in my life.

Haley's 2nd birthday is coming up, and I have been asked by a few what to get her for her birthday. As you know Haley has EVERYTHING and then some. So I want to give to those who are not as fortunate as Haley, who is already surrounded by so much. There is a website http://reecesrainbow.org/ that helps children in Eastern Europe get homes. Here are some statistics of what happens to many, many children with special needs there.

"In Central and Eastern European countries alone (this would include Ukraine, Kazakhstan, Romania, etc, but NOT Russia), there are more than 1.5 MILLION CHILDREN who have been abandoned by their families for one reason or another and are living in "public care" (that's the nice way to put it).  If statistically, 1 out of every 733 live births results in a child with Down syndrome, that means at any given time there are 2,046 children with Down syndrome who need families.  THAT'S JUST IN EUROPE!!  Some do not survive because of serious medical complications…some do not survive because of lack of medical attention, lack of food, lack of LOVE. 

In Russia, there are over 700,000 children waiting for families, meaning at least 955 children with Down syndrome wait, languishing.  In ASIA (China, Hong Kong, Korea, India), there are 3,572,000 orphans, with nearly 5000 children with Down syndrome who are unwanted.  Many of those children are killed at birth.    The "lucky" ones end up in orphanages and foster care situations."

What I am asking is to please look at this site, and in Haley's name, instead of getting her another toy (She has about everything under the sun) or more clothes (She has a closet full and two boxes full of clothes) - make a donation to this organization which will help an unwanted child find a loving home. There are plenty of children to choose from, and your donation will go toward that child's adoptive fees. Anything helps, $5, $10...it doesn't matter.

I have a blog that I follow. http://theblessingofverity.com/ She adopted a child with special needs, with help from Reeces rainbow. The child is 9 years old and weighed 10 pounds and was shorter then Haley from the lack of care that she received. Watching her blossom from just one month of having a family that loves her and cares for her has been such a blessing that it has instilled in me a passion to try to help the other children there as well.  I would love to be able to tell Haley, that in her name she was able to help a child find a family.

If you need help choosing a child, here is one that we have donated to in order to help the family bring her home. http://reecesrainbow.org/9184/sponsordirkes

Please pass this along to anyone who inquires about Haley's birthday.

Thanks again,

Adrian, Stephanie and Haley

Halloween

I'm way behind on the blog =/ But here is a photo dump of Halloween pictures. This was her first Halloween since last year she had to stay in because of her bad heart =(. She had such a blast!!!

Blood Test

  Let me start this by giving you some back ground  information about our decision to not have testing done while i was pregnant. Adrian and I had decided that we didn't want to do the test to check for Down Syndrome because it wouldn't change our mind about having the baby. Its a decision we would ever choose again. Not because we would ever terminate, but because the shock of knowing at birth took away the joy that should have been there the first few months of Haley's life.
   In my honest opinion I like the blood test. I think being informed early is great. People can get educated on  Down Syndrome and come to grips with the slight new detour in their lives. To me the problem is not whether or not people know about Down Syndrome early its what information they get. Our experience was horrible. I have no doubt that if we had known before she was born, with the information we were given and the way the doctor was so stricken about her having an extra chromosome we would have seriously considered termination. I mean if the doctor is so stricken about it then there would be no way that Haley's quality of life would be any good. I'm not saying all doctors are like this. Haley's pediatrician now is amazing. I look at him with her and think how different would my experience have been if he had been the one to tell me my child had Down Syndrome. But a lot of doctors are not well informed. I have heard countless stories of people whom get the diagnosis and the first things out of doctors mouths is I'm sorry and give the parents a referral to a grief counselor.
  Imagine if you will, a doctor coming in and saying "Congrats your having a baby with an extra chromosome. Its going to be a lot of work, but every child is a lot of work. Your baby is just going to need more help to figure simple things out. But when they do figure it out,  your heart is going to swell and your going to feel like you won the lottery." Obviously its different for every person, and I have only spoken to a handful of people about it, but the answers are still the same. A positive response would have been less traumatic. There still would have been the uncertainty, the grief, but I honestly believe in my heart that the number of women who decide to terminate because of Down Syndrome would drop if the doctors would be better informed on what life with a child with Down Syndrome was really like. How fulfilling it is. How there is stress, and tears but that comes with the territory of any child. It is not a death sentence for your life.
   What I'm trying to get at is that the blood test isn't a bad thing. As long as the person delivering the results has the right information. I think that with the blood test should come training for Doctors on how to deliver the results in a positive way. If the person you trust with the health of the most important person in your life tells you that there are challenges ahead, but that its not the end of world, how can you not have hope that everything is going to be ok??

Unexpected path, amazing path

       When I was a little girl I always dreamed about being a mother. I played with dolls (longer then I should have), I fed them, talked to them and practice taking care of a child. Obviously becoming a parent is a lot harder with a real baby then one made of plastic, but I was 8, what difference did I know?
       Jump to me being 24 years old, married and about to give birth. I had woken up at 5 in the morning to the realization that my water broke. I was 37 weeks and my husband was three hours away. I was staying with  his parents, since we didn't like any of the doctors around where we lived. So anyway, my water broke, my mother in law and I headed to the hospital and my husband was on his way. It felt like an out of body experience, the moment I had dreamed about for a large portion of my life was about to come true. I was about to become a mother. I was about to count 10 finger and 10 toes and look at my beautiful baby, whom I had waited 24 years to see. At 11:01 pm after hours of not dilating a single centimeter, with my husband at my side we welcomed our daughter, Haley Marie.

     The moment that I saw her, I felt such joy, and a little confusion. She didn't look like I thought she would. I can't exactly pinpoint what was different but I thought she looked like she had Down Syndrome. But that couldn't be right. She never showed any of the markers in my sonograms. I mean she had a tongue protrusion in her 4d sonogram but all the technicians thought it was cute and nothing to worry about. 

  My husband Adrian went off with Haley to get cleaned up and I stayed in the recovery room. I still couldn't shake the feeling that something was off. So when they finally handed her to me to hold, I looked at my husband and asked him if she had Down Syndrome. He told me no way could she have that and I assumed maybe its just my imagination. Then the nurse walks in and says we have to talk to our doctor because she showed some signs of Down Syndrome (even though she wouldn't say it outright, since the doctor had to give the diagnosis I knew that is what she meant). Since I had given birth so late we wouldn't see the pediatrician till the following day.
   Our night was uneventful, she would have slept the whole night if we let her. She was getting bottle fed because she had such a weak suckle that she wouldn't latch on. In fact her suckle was so weak that she had a very hard time drinking the bottle. Adrian and I didn't really talk about her having Down Syndrome, we wanted to wait to see what the doctor had to say. He ended up showing up in the afternoon, asked us basic questions about Haley. We finally told him that the nurses suspected that she might have Down Syndrome. He looked at us and seemed genuinely shocked that someone would tell us that. Then proceeded to tell us she in no way had Down Syndrome. He even seemed mad that the nurses would suggest that. Needless to say we were ecstatic! We were now just working on getting her to take a bottle, then eventually move on to breast feeding.
   Our last day in the hospital (Saturday) one of the nurses found, while listening to her heart, a murmur. They did a bunch of echos and said they would call us with the results on Monday. The weekend came and went with us just taking care of our daughter and hanging out with family. Monday finally arrived. First I got a call from her cardiologist saying that her echo revealed her heart condition was serious and that we needed to see him the following week so that he can take a better look. I freaked. I couldn't believe there was anything wrong with her heart since we paid extra to have someone look at her heart in the womb to make sure everything was ok, and she got the all clear. Our next call was from the pediatrician. He said he talked to our cardiologist and that her heart condition looked like it could be an AV canal defect. He took a big breath and told me that her heart condition made it very possible that she did have Down Syndrome. Its mind blowing how two little words can turn your life upside down. I hung up the phone and just held Haley as I wept. I couldn't believe it. I had a feeling in the back of my mind, but hearing the doctor say it was like having someone sucker punch you, all the while shattering all your dreams.
    We did a genetic test that week, but I knew in my heart that she had Down Syndrome. 2 weeks later it was confirmed. Haley has Down Syndrome. More specifically Trisomy 21. Adrian and I were devastated. We never showed it to our families, only in private. We talked about putting her up for adoption, we thought our lives as well as hers were over. Everything we had researched was negative. Her doctor didn't help matters by telling us she would only be able to play with other children with Down Syndrome (don't worry he is not our doctor anymore).
    Never did I imagine when I was playing with dolls that I would have a child with special needs. Never did I imagine that I would be strong enough to be who my daughter needed me to be. But life has a funny way of making you step up. Making you think back to those beginning few months when all you wanted was to curl in a ball and hide from the world, and realizing how silly you were. I never imagined being so proud, so thankful to have a child with special needs. She has made me grow into a better person. Has taught me about empathy, and unconditional love.  Has brought my husband and I closer together. I am extremely proud of my daughter and all that she has accomplished in her 20 months on this earth.