10-13-2011 - it will be ok

I hope this finds you in a place where you are ready to recieve what I am writting.  I am talking to parents who discover that their baby will require heart surgery and may or may not have down syndrome.  I want to tell anyone who is facing the same road we are now traveling...IT will be ok...it doesn't feel like it right now...but it will be ok...

I have the need to share the way I was feeling in September 2010 when I found out that my unborn baby was going to be born with a heart defect that will require surgery and 50% of babies born with this heart condition also had down syndrome.  I was supposed to be going to find out that my baby was a girl and then go shopping for cutsie little pink outfits and clothes.  I was unprepared for this diagnosis, something that I had not imagined would ever happen to me.  This stuff happens to other people, not me.  I spent the next few weeks crying.  Crying for myself, crying for the life of my baby, crying for her future, crying because I didn't know what this diagnosis really meant or what it really would look like, or how others would treat me and my baby, crying because there was nothing I could do to "fix" it, and fearing that I would not see my baby as beautiful.  I struggled with knowing and not knowing.  I prayed for a miracle healing.  I prayed for God to just let me have her.  I feared she would not make it through delivery and then if she did I feared she wouldn't make it through surgery.  I was ashamed of some of my thoughts and worries.  I was ashamed of some of my feelings.  I felt soo alone, even though I had a support network beyond explanation.  I felt like no one understood what I was going through.  No one really understood my dreams of the "perfect" baby were shattered.
Her delivery brought mixed feelings, excitement for the arrival of my baby girl, fear that I would finally have to face the reality of whatever happens once she was born (would she live/die, would she have down syndrome or not) and guilt for not feeling anything but joy.  I cried though the delivery...not because it hurt, but because I was scared.  Scared of facing reality.  When she was born and I held her in my arms and saw she was alive, she was moving, and breathing, and ALIVE...I held her closer and longer.  I didn't want her to go away.  I wanted her right here with me.  I wanted to protect her.  I wanted everyone to love her.  At this point we didn't know if she had down syndrome, but that was not the major concern.  What kept me up at night worrying was that soon she would have to go through a massive open heart surgery.  Someone would cut her open on purpose to fix her heart.  I struggled with this one all the way through till she was 5 months and old enough to have the surgery.  For now, I had her in my arms and I wanted to do everything I could to make sure she survived the surgery.  We added her to EVERY prayer chain you can imagine.  We started prayer chains on facebook, we added her to prayer chains on the web, and through word of mouth.  There were soo many people praying for my sweet Ellie Mae.
Jumping ahead...Ellie's surgery...brought soo many fears and MANY more tears.  My biggest fear through all of this was loosing her.  Everything else we could work through.  I couldn't handle loosing her.  I repeated OVER and OVER...please don't take her God...please let me have her...please let that be your will.  It was his will.  We spent 11 days in the hospital and she did wonderfully.  We have our beautiful baby girl and she will grow up and grow old and we will be fine.  The diagnosis is scary because you do not know what it really means, or what it looks like.  No parent wants their child to have to have a surgery, a disability, or both.  your feelings are ok, it is normal to have these feelings.  I wouldn't change anything about my beautiful baby girl.  My little Ellie is a blessing to our family  She has brought us closer together and closer to God.  I still do not know what raising her will look like, but I don't know what raising my other two children will look like either  No one is guaranteed anything.  All I know is I will love her and my other two children and do the best I can for them.  When I look at my little Ellie Mae, I do not see a baby with down syndrome, I see my perfect miracle from God.  Her smile is beyond words, her laughter is enough to break you into tears.  I never imagined loving a human being as much as we all love her.  Please know once, you get past the initial shock of everything, you will be happy beyond words.  You will have a new outlook on life and a peace beyond words.  You will be ok, your baby will be ok, God will bless you as he blessed my family...with our extra chromosome....My prayers are with you for strength and peace.

Here is a story that explains the emotions you feel...I did not write it....but I clung to it the first few weeks...

WELCOME TO HOLLAND!!!

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

October 8, 2011 - Videos of Ellie today 8 months old

 After my post I was cracking up laughing over Ellie's noises and I said to myself..I should put some on the blog for everyone to enjoy...so here they are!!

ENJOY!!!

October 8, 2011 - updates

Sorry it has been so long since I have blogged, but life has gotten a little crazy since school started back up.

Since the last blog...

Ellie had her 6 month re-evaluation with her interventionists.  The assessment they gave her is an assessment they give to all children, not just children with disabilities.  The normal scoring range is between 90 and 110.  Ellie scored a 89.  She is one point below the normal scoring range!!  They believe the only reason she didn't score in the normal range is because she was laid up for several weeks when she had her open heart surgery and if she would have been able to work on skills during that time she would have scored in the normal range.  I was told that the intervention that is offered now for babies with DS is more intense then it used to be and they notice a HUGE impact on the development of children with DS long term. There is no one magic pill but they say some things that can have an impact on her development are fish oil, vitamins, and florestore.  Babies with DS tend to stop producing the oily substance in their brain and the fish oil can replace that helping their brain to process quicker.  Children with DS tend to become sick more often so taking vitamins and florestore can help prevent many of these sicknesses and help her to stay on track with development instead of being laid up with an illness.  We are doing all of these things.  She is receiving developmental intervention and physical therapy as well as taking all of these supplements to help her development.  Her biggest advantage is the prayers that are with her.  There are soo many people praying and loving this little girl.  She is definitely in the hands of the father!!  Thank you Jesus for my beautiful baby's progress.

We participated in the Down Syndrome of Louisville On the Move Buddy Walk.  We weren't sure what it was all about so this year we just went as a family.  It was AMAZING to see all of the people there.  They had posters of children and adults with DS and pictures of them and their abilities.  It was very hopeful to see.  Anyway...next year we want to form a team to walk with Ellie.  They had all kinds of teams there with really cool themes and names.  Names like Susies superheros  and Patricks Patrol.  We want to come up with a cool theme and team name for Ellie for next year.  We also want to have MANY people on our team.  How awesome would it be to have all those people walking with Ellie to support a program that is going to be working with Ellie for the rest of her life.  The Louisville Metro area has approximately 500 families they serve that have DS that is not to mention the surrounding areas.  I have been told that Ellie is in the best place to grow up with DS.  She has soo many programs and opportunities for her to be independent and work, and live, and be...like everyone else.  God knew the plan to bring us to Lousiville LONG before we Ellie was even a twinkle in my eye.  Anyway...We need help coming up with a name for Ellie's team for next year. Any suggestions are welcome.

Also, recently there was an article in the paper about a little 3 year old boy named Brady.  He was born with DS and a congenital heart defect that required MULTIPLE surgeries.  He passed away during the last surgery he had.  The article went on to explain that many people see children with DS as a burden on the family and society because of their health issues and long term care issues.  However the family argued that the life of little Brady was valued by all who knew him.  In his short years he touched more people with the kind of love we only dream about.  The kind of passion that we have never seen and the drive that can not be detoured.  So many people hear DS during their pregnancy and the thought of termination crosses their mind.  I could not imagine life without Ellie.  I pray that no one ever takes the life a child due to a diagnosis of DS.  They are not a burden, they are a blessing...I cried when I read Brady's story in the paper beause his story hit home.  His final fate was what I had feared for Ellie.  That was not God's will and we are still blessed with my little miracle baby.  Her smile melts me, her laughter brings me to tears.  No matter how tired I am or grumpy I am...one look from her and everything goes away and the world is good again.  Thank you Lord for opening my eyes to what is important.  I wouldn't change one thing about Ellie...I LOVE her and her extra chomosome.  Oh...there was a cool poster up at the DS walk...it said...Friends don't count chomosomes.  AWESOME!!