31 for 21 day 1-ABC's of Down Syndrome-A

A is for acceptance, advocacy, adoration, adoption, and of course the other A word which I will save for another day.

We are birth parents to almost 11 year old Meghan (and Fred, Terry, Eric, Brian, and Julia...) Funny, most people assume we adopted Meghan because we are older. Ya know ancient, in our early 50's, yikes. I hate hearing "Are you their grnadmother". OUCH

We did not have a prenatal diagnosis, we did not seek one. We had 5 children born without any issues, so why should our 6th have any? Except somewhere in those seconds during her earliest cell division, her 21st chromosome got sticky and made 3 copies instead of 2. So in that 11th week of pregnancy when I got the surprise announcement that I was expecting, Meghan was already a baby with trisomy 21.

When Meghan was born and it was obvious to everyone from her facial features, hypotonia, and heart murmur, that she probably had Down syndrome, with her birth we learned the first A word. ACCEPTANCE.

For some parents acceptance takes a long time. It is not because we do not love our child, though I am sure there are cases where families simply cannot, not in the enduring way a parent loves their children, and those parents give their babies up.

We accepted and loved Meghan on sight, but I felt very sad and guilty about her being born with a condition that would mean the world (which is cruel enough for most of us anyway) would not accept her as a human deserving their respect or even their notice.

I think it took me a few weeks to stop wallowing in sadness and to finally stand up for my daughter, the end of the month she was born, when the doctors in the teaching hospital wanted to use her for their very own Down syndrome specimen, AKA lab rat. Cruel in their study of my daughter to the point of dehumanizing her. There was where the second A word came into play: ADVOCACY.

I simply put a stop to their very unkind scientific explorations. Test her for this, oh gosh, lets do this invasive test on her, how about this one...how about no. I told them, that was it, no more testing, we were stopping all the nonsense of trying to find abnormalities, if she presented with specific health issues, we would test, but not until then, period.

Being Meghan's advocate was and still is a full time job X3, besides caring for her like any mom would a tiny newborn, with cuddling, rocking, numerous diaper changes, and sore nipples from breast feeding. I called (being a stay at home mom at the time, my husband had a FT job) the agency to come here and determine she did indeed have a disability that allowed her to be served under DES/DDD. Next came the services coordinator Maria, and then the therapists, OT and PT at first. I did all the paperwork, was here for the home visits, was therapy Mom and I watched Meghan change and grow and learn with feisty determination. Which brings me to the next word ADORATION.

Meghan had such a strong spirit, she was funny, loved to be in the middle of everything our family did, and she loved us all so much. My love for her grew to adoration. ( Truth is, I adore all of my children)

Cancer entered our lives when Meghan was 2 years old. It was bad, I do not recommend a cancer journey to anyone...but I am always grateful for the miracle of my continued life. I can vividly remember praying the day I found out, "Please God, I cannot leave Meghan behind" for though the thought of leaving any of my family behind crushed me, I knew she may need me the rest of her life, but my other children would build lives away from me, with spouses and their own children. Meghan could have some of those things, maybe, she was so young, it was impossible to tell, but she would not be able to without some support from me, her advocate and her mother.

Years ticked by further separating me from the diagnosis, tests showed I remained NED. I was back working for a new fitness center after being dismissed from my job of 17 years for leaving too often for surgeries. I had a sense of "Now what will I do with my life?"

Then I learned something heartbreaking; there were countries that sentenced their citizens with Down syndrome to institutions for life. I found Reece's Rainbow in July of 2006. I do not think I stopped crying about those haunted faces for months, going back to the site again and again, and then the ton of bricks hit me. That brings us to our final A word for today ADOPTION.

Yes, the first time I saw the toddlers, I cried, I looked at Meghan and then back at them, and just cried. Deep down I knew, if people in America could get away with such inhumane treatment, they would do exactly the same thing, and we have before, while we should protect "The least among us" we often fail one another. The thought of adoption just did not occur to me, we are ordinary people making a modest living. Rich folks adopt, right, people who are childless adopt, but not people with 6 children of their own, do they?

So enter the ton of bricks, and my very own "Wait, maybe we CAN adopt too" moment. It was quickly followed by paralyzing fear. $?$?$? what about the money, who has that much money? I looked at the paperwork needed, a very long list of things-get a passport...clearances from police agencies (Would that speeding ticket I got in 2002 count against me?) I kept thinking that every journey begins with a single step, so just take the step, do it, just do it. Finally after a lot of soul searching I got the courage to send that first email asking about Eve. She was in Eastern Europe, and one of maybe 12 children, RR was new then. I got a message back, Eve was likely Evan, so I searched again and found a bright, happy girl with sparkling eyes who had a committed family the weeks before, but no longer did. What about her then? After all that I had to do the second hardest thing, I had to tell my husband what was in my heart...Thus began our adoption adventure!

We did not adopt the first girl we gave our hearts away to, nor the second, instead we brought Kara home on a blind referral. Silly sweet, wonderful Kara, and 5 months later, our equally sweet and very wonderful Amanda came home too.

So the answer then was yes; parents who are not really young, and have 6 children can adopt, speeding tickets do not count..and sometimes miracles happen.

31 for 21- Day 4-Down Syndrome Pregnancy

If you read our blog, you already know, we did not have a prenatal diagnosis. However many of my good friends did, and I would bet this guide would have been amazing for them during their pregnancies.

http://downsyndromepregnancy.org/

I have downloaded it myself, I continue to read about thoughts and feelings of others parents who also have children with 47 21st chromosomes. I love reading about other families and seeing their children's pictures, hearing about their challenges and milestones. I never grow tired of it.

I admire parents who bravely face all opposition and continue their pregnancies. I know that they usually have less people applauding their decision than those who support them. It is so sad that this happens, but it is human nature to reject the unfamiliar. I also believe that the people in opposition put themselves in our place and know they could never parent our children.

I know we had a flood of negative and ignorant comments following Meghan's birth. I remember some of them, others, I ignored, considering the source of the statement, rude people are usually rude about all aspects of life. I also saved every note, email, and letter that welcomed Meghan with love and acceptance. Those people did not know how much their support meant to us at during those raw first weeks.

It was not an easy transition, it was painful, it was scary, we did grieve the loss of the "perfect" baby girl we thought we were going to have. By the end of December my tears stopped (for the most part) and I had begun to accept my (our) new normal, I got the courage to explore what that life may be like. I finally bought books about Down syndrome and read them from cover to cover. I joined online groups, specifically:


Downsheart http://groups.yahoo.com/group/Downs-Heart/

And UpsNDowns http://health.groups.yahoo.com/group/UpsNDowns/

In Downsheart I learned about AV Canal and Tetrology of Fallot, two of the most common heart defects for babies with Down syndrome. Meghan's heart issues, ASD, VSD, and PDA were minor by comparison, but still a cause for worry for our family.



Learn about heart defects HERE

UpsNDowns is a group of parents with mostly school aged children. From that group a few new moms like myself formed our own tiny support group. I continue to talk to two of those moms to this day. UpsNDowns was also the group I was visiting when I learned about Down syndrome adoption in 2006 . I visited Reece's Rainbow after reading an email. Reece's Rainbow led us to adopt two pretty amazing little girls.

My fervent wish for families who feel they cannot parent a child with Down syndrome is to consider adoption rather than termination. There are hundreds of families who are waiting with aching arms to love and raise babies with Down syndrome. By choosing to give your baby life, you are giving them a family who is prepared to handle medical issues, early intervention (portage), special education, IEP's, and challenges that come with parenting a child who learns a little differently. Families like ours.

Adopting Kara and Amanda after Meghan entered our lives is such a tremendous gift, they are challenges for certain; as I type Amanda is YELLING at the top of her voice, something new for her, she is "talking". However, I remember 4 boys who did the same thing, in unison, and often, so small children are small children, and sometimes they get rowdy!

31 for 21 -day 17-can you help?

Raul

Adoption is important to our family, all children need families, from kids in foster care to international orphans. We advocate for special needs adoption because these precious little children are often the ones that get left behind. With hundreds of thousands of orphans with CP, heart conditions, limb differences, cleft lip and palate, spina bifida, all the trisomies, HIV positive, FAS, FAE, autism, the list goes on and on, all of these children are the ones potential parents say they do not want, they want a perfect child, one who has no issues. Well unless you are us or thousands of other families like us. We ask for the kids with a little something extra because we see them as simply children. Children we love and adore.

I got an email today from the Wisconsin chapter of Gift of Adoption, one of their grant families has requested help in placing a wonderful little boy who has CP. Here is his email.

I recently became aware of a 6 yr old boy in an orphanage in Eastern Europe who is in desperate need of a family to give him a home.

The boy's name is Raul. He is 6 years old and has been diagnosed with cerebral palsy. He is about to age out of his orphanage and into an institution for adults and children with handicaps, unless a family comes forward very soon. Not only are the conditions much more harsh at this facility, but his moving there will sadly end his chances for adoption.

I came to know of Raul's story because his sister was adopted about a year and a half ago with the help of a GOA grant. I have stayed in contact with her adoptive mother from time to time, but I just learned earlier this week for the first time about Raul. They have remained in contact with Raul through some people from Bethany Christian Services who are ministering at the orphanage. They are all working feverishly to find a home for Raul before it is too late, but have as yet been unsuccessful.

They describe Raul as someone who could make huge and immediate strides given the care, attention and love of a family. He is sweet, affectionate, happy, aware and interactive. But yet he is just now receiving (limited) therapy that his helping him to walk with assistance and to pick up cheerios with two fingers, and there are many unanswered questions about his long term cognitive capabilities. I am not certain of the degree or level of his CP.

This is obviously not an easy child to place, but I know in my heart that there is a family out there somewhere that can give him what he needs. I also know that Raul has so much to give back to that family; he just needs help in finding that family.

So...I am writing to ask if you might have the time and heart to help spread Raul's story. I feel a real sense of urgency given his condition and his age and would so much appreciate anyone who might help make the critical connection that is required for him to find a family and for a family to find him.

End of email. (edited per request)

I have not included the email address as I was not given permission to, but I can and will send it to whomever asks about Raul privately, I will ask what other information I can share.

I have seen pictures of poorly run institutions, please do not let Raul end up in a place where he will like lose all mobility as he could be tied to a bed all day as so many kids are. I did get two very tiny pictures of Raul, I hope you can see him. Please open you hearts and minds to this little boy, pray for him, spread the word about him.

I know this is not about Down syndrome, but it is about finding a home for a very special little boy, he needs his forever family.

31 for 21 day 6-Christmas Warrior

You know by now that Kara and Amanda joined our family via international adoption. We were one of those families who never thought, not in a million years, that we would ever adopt, nor that we could ever afford to adopt. When I happened upon Reece's Rainbow late one night in the summer of 2006, I was not prepared for the pictures of hundreds of children with Down syndrome nor how seeing them would change my life forever.

At first I just cried, seeing face after face of those precious children in orphanages, children like my Meghan, but with no mommies or daddies, no brothers or sisters, it devastated me. I spent weeks visiting several times a day and weeping and praying over the children. My family thought I was going bonkers, I called them over and showed them the kids, "Just look at this one, oh, and this one, this little girl looks like Meghan, oh and this one looks so skinny, this little boy is so sad". They thoughtfully listened to me, but I could see they thought it was hopeless, how could we help them from here? There were so many, we could never adopt, us? No way, it was expensive, the process was daunting, I read the process over and over and told myself that I could never get through all the paperwork, I did not even own a passport. And there was no way in the world someone would let me, a breast cancer survivor, adopt a child.

After a couple of months telling myself all of this I saw a face of an angel and I just knew I had to be her mother. I got the courage to write to Andrea and ask about little Eve.

This was my email written October 4th, 2006:

Hello Andrea,

I am Kris, mom to 6 kids, my youngest Meghan, has Down syndrome, she is 5 and we are homeschooling her at this time. I saw a post about this list on the Upsndowns list on Yahoogroups.

I am a breast cancer survivor, almost 4 years since diagnosis, I am wonder what the criteria is for parents, would my past illness affect my chances of being considered for adoption?

We would be looking towards adding another daughter.

Kris

That first step was taken without discussing anything with my husband, that's right, I knew in my heart if I were called to adopt, he would soon follow and indeed he did! Of course Eve turned out to be a boy! We chose another little girl, and then another, but both of them went home with different mommies and daddies. Kara was a blind referral, we went to Ukraine, they pulled a file and said "We have this little girl" and we said "oh yes". You can read all about Kara's adoption on her blog, it is linked to this one. We had a crazy adoption ride, but the end was marvelous!

Nine months later Amanda came home, almost two years from when I first found Reece's Rainbow. Amanda's adoption blog is also linked to our family blog.

Our hearts are opened to adoption, I think when that happens, you want to keep adding children because you see the need for them to have parents and you want to parent them. We are happily busy bonding and becoming a family with our two newest additions, maybe someday we will adopt again...

Andrea told me about the Christmas Warrior program, and I decided that instead of thinking of us adopting, we could help another family decide to follow their hearts by providing an adoption grant for one of the waiting children.

Please meet Paula, she is a sweet 3 year old little girl who is awaiting a family. She is in an orphanage in Eastern Europe, and we are her Christmas Warriors. For the next month we will do our best to raise $1,000 (or more) for her adoption grant.

From her profile at Reece's Rainbow:

Girl, Born April 19, 2006
Many folks have been waiting for a beautiful, young Caucasian girl from a country where the cost is lower and the travel is easy.

Here she is! Paula has sandy blond hair and blue eyes. Main diagnosis: Down Syndrome. Inborn Cardiac Malformation - atrioventricular septum defect - cardiac insufficiency - condition after surgical treatment. Lagging behind in her development. Esotrohpia. Hypermetropia. Strabismus - condition after surgery.

What is great is the travel time is so short, that is a plus, and single mothers can adopt her as well.

Her adoption guidelines:
2 trips, 5 days each
Approx cost only $19k!
NO UPPER AGE LIMIT
Single mothers may apply
Multiple children can be adopted together
Full medical info prior to official referral
Easy dossier, very few restrictions

Please join me in prayer for little Paula, that her health stays stable, that a family decides she is their daughter, that we can help that family by raising a sizable grant to make their adoption easier.

I know she looks so sad, it is so much easier to fall in love with a smiling child, our Amanda was a solemn little one too, but oh my, she is livelier every day, she is not the little girl we brought home a year ago. Paula is such a dear little girl with so much potential. Help us help her find her forever family!

As a fundraising tool, I will hold a drawing for 4 free Gold Canyon Candles for anyone who who contributes towards her adoption grant. One candle per week, the drawing held at the end of the 4 week period. Look for the Chip-in on our blog.