What is normal? One Chromosome Unites Us

When we had Meghan, people felt compelled to tell us stories about friends and friends of friends, cousins, aunts, uncles, all who had someone with Down syndrome in their lives. I actually loved hearing all of the stories; I was hungry to hear that the children grew into adults who did "normal" things.

We use that word a lot as parents; normal, "Is it normal for her to eat like that, sleep like that?” The opposite of normal of course is abnormal. I cannot think about the word abnormal without thinking of Young Frankenstein; the part where Igor gets a brain for the "monster" and picks the A.B. Normal brain. The doc was rather upset with him, but if you saw the show, you know that brain worked pretty well for Frank, in a round about way. LOL Hmmmmmm.

We joke here that none of us in this family are normal, and we are glad we are not typical of everyone else, how boring. Sometimes it gets us in trouble to be independent thinkers, but I would rather that than the alternative, we do not intend to maintain the status quo, heaven help us, no one should considering the state of our world. We embrace diversity, individuality, and cherish each person in our family for the wonderful person they are. We respect one another, even if we do not always agree with the others POV. I like that word, RESPECT.

This is one of the reasons it is difficult for me, for us, to comprehend the reaction some people have to our youngest family members. Meghan, Kara and Amanda often get mixed reactions when we are out as a family, and I will report to you, that if you are the person who rudely stares, nudges your friends to also stare, and begin to whisper and laugh derisively, then you will get 7 angry scowls from a very protective family. You see, we see you as unkind people with poor manners. As unenlightened people and we pity you for your ignorance. You cannot and will not see that we feel blessed to have our three daughters/sisters in our lives, you just see through your own bigoted eyes.

You believe that my girls are not "normal" children, and that makes you uncomfortable. Your behavior will forever bring to my mind a verse in a song in "Beauty and the Beast" the "Kill the Beast" song. Indeed, I sing this to myself whenever I get rude reactions to my girls (thankfully we usually get very nice people interacting with our family)

We don't like
What we don't understand
In fact it scares us
And this monster is mysterious at least
Bring your guns
Bring your knives
Save your children and your wives
We'll save our village and our lives
We'll kill the Beast!

This is what families do to children diagnosed prenatally with Down syndrome (and other conditions and syndromes), they kill them via abortion, I know you will use the words “terminate the pregnancy”, but folks, it means the same thing, look it up, to terminate somebody means to murder them. I have read your reasoning in blogs and articles for terminations of your pregnancies, some of you have heart wrenching explanations; I have cried tears of sadness and pity for you. I try not to judge, I am not you, but I can't help but think that if doctors, geneticists, and other medical professionals would stop painting such a bleak picture about babies born with Down syndrome, more of the children would have a chance to be welcomed into this world. If the families cannot raise their children there are hundreds of others lined up to do it for them! Adoption should be the choice over a 90% abortion rate.

I have spoken to enough women about their doctors recommendations following prenatal discovery of that extra 21st chromosome to have a pretty good understanding about what the medical community in general believes; that anything that is not normal is BAD. That they need to FIX it, so it will not be ABnormal. How do you fix a baby born with an extra chromosome? You do not, you get rid of them, because it is BEST for the family and the children will be a BURDEN to your other children after you DIE and it is NOT FAIR to them to bring their brother or sister into the world or in our case with no prenatal diagnosis, to being the baby home? I have no respect for a community who would believe this, and it does make me distrust most doctors. How can I entrust my daughters to you when you believe they never should have been born? How can you look into their beautiful faces and not see a whole person?

I believe that the attitude the medical world has empowered hate groups, it justifies their beliefs. They feel warranted in saying my children do not have the right to breathe the same air as they do. I have had the ugly truth hitting me in the face this week. Hate groups of any kind are difficult for me to understand, how can someone embrace that much vitriol in their souls? It takes a tremendous amount of energy to hate something with that much malice, they have to be exhausted, they work so hard at it…

In my heart I feel that people with this mindset are missing something essential in their souls, they cannot respect anyone who is different and they cannot love and accept anyone they see as ABnormal, and they teach their children to abhor anyone different as well, perpetuating a terrible cycle. Their intolerance is the basest of human emotions and it presents itself as a festering boil, suppurating on the skin of civilization.

What do we do to boils, we lance them and let the pus drain away, lest the infection take over and kill it’s host…but how do we teach tolerance and acceptance, how do we help the masses see that our children are always children first, who share more in common with them than they are different? How do we rid the world of it’s infection of bigotry? I am not immune, because I feel great animosity towards those who hate my children.

To those of you who call my children retards, morons, imbeciles, or any of the other words you have twisted into your hate speech I proclaim that I love my daughters, I adore them, I am so proud of them, having Down syndrome it is a small part of who they are, to me and those who love them they are normal, they are perfect, and they have my respect for I know they work hard for everything they learn. They are smart, funny, and wonderful human beings. I thank God for them every day. I feel compassion for you, for not being able to see what I see, to feel what I feel, you are missing one of the universes greatest gifts.

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.

God Doesn't Make Mistakes

I got this on Facebook this morning, and after yesterday it was a wonderful video to watch, I was upset off and on about the research issue. I completely agree, with the song in the video, God does not make mistakes, but since we have free will, we most assuredly do.

Yesterday Tom and I took all three girls to a home with us so we could work on the Down Syndrome Connection web page, we met an adorable little girl, oh my goodness, she is almost 4 and greeted us at the door, Kara was the first one in and she said oh so clearly, Hi Kara. None of my girls are great talkers, this little sweetie sure is, and oh yes, she has Down syndrome too. I am hoping we, all the people working on the web page, can get it to the place we want it. Little L's daddy knows his stuff, so I know we are on the right track.

As is typical, Meghan ran to the back with L, they proceeded to dump L's enormous toy box out, argh, I get so embarrassed when my kids do that.Kara bounced on the bed, she is a bouncy girl! She then found a shopping cart and pushed it all over the house. There was a mirror on the wall, at L's height, and Kara walked past it smiling at herself, she adores mirrors. She did that a long while. Amanda came and sat with all of us, first with me, then L's daddy, and them me again. Now I know that wanting to play is emerging, yesterday Kara and Meghan went into the playhouse here at home, and Amanda opened the door to join them too, that is new, she used to ignore them. She also goes in on her own and sits on the Nemo bench in there. Oh, and did I mention it? She took 5 steps to me! 5! She is getting closer to walking!

When we finished with drafting out what we needed on the web page, we went to the store, it is a smallish store and it was packed, so I took just Meghan in with me. Normally she climbs in a basket, but Tom has been letting her walk when he takes the girls shopping, so she walked alongside me and she did great, she even picked out the items we normally buy and put them in the cart. She stayed with me too, my little girl, she is growing up, it happens so fast!I was proud of her yesterday, she used to run away to another aisle when I gave her some independence. When we got back to the van Kara was napping and Amanda was MAD, she wanted to come too. Doggone it, I felt so bad, we just wanted to run in and out really fast, today she can help shop for her sisters birthday present.

Julia went to a concert yesterday, KFMA Day, she loves concerts, even taking pictures for our local bands. She gets some great shots too. She came home last night with sore feet looking exhausted but happy! I am sure we will hear more about it today, she went right to bed!

I wanted to remind you about our fundraiser for our Buddy Walk, we do not care if we make our goal, but we do want to raise something for our Buddy Walk, so far we have no donations.

DONATE HERE

31 for 21

We did this last year and are determined to try again this year, I cannot do it on all three blogs, so we will use our family blog instead of this one and Kara's and Amanda's LOL.

Every October I think about what it means for our girls to have Down syndrome in America. Now most well meaning folks say the same thing to us when they see the girls, can you guess what that is? "Oh, you are so lucky, all Downs kids are so sweet, so loving" and "You must be special people to have three" I just smile and say thanks and move on...I have given up trying to explain anything to them. Meghan has always been shy, I share that with her, I was a terribly shy child myself. My dearest friend was over a few weeks ago and Meghan hugged her for the first time, now B has been here quite a few times, but Meghan has always been so reticent around her, not sure what is going on in her head, but she gifted B with a hug and it made B so happy. It isn’t because Meghan dislikes a person; she just prefers to assess them before warming up to them.

Now Kara, our jolly and rascally little scamp, she will jump on all our visitors and say hi, she is learning that not everyone appreciates it and is doing it less. Amanda climbs in everyone’s lap, but she drops her head, grinds her teeth, and shows distress when she does, not sure what is going on in her little head, maybe she thinks she has to say hello?
So many people also say that they could never do what we do; that puzzles me until I think about what we do that other parents do not, that for almost 9 years our lives have been about therapies and developmental milestones. That is normal for us, but most parents take their children’s development for granted, I know I did with our first 5 children, typical kids roll over, scoot, crawl, cruise, and walk, and talk on their own and on a good timetable. With Meghan and now Kara and Amanda, we had to show them how to do each thing and then do it over and over and over until their bodies and minds learned to do it on their own. It took work from her (them) and us, and it took time away from our other children, but truly not an excessive amount of time, and often they would help us and do the therapy exercises with their sister while they played with her! Of course they are not here to do that with their two new sisters now. Trying to find a balance between Meghan's needs and the needs of our typical children has always been a struggle.

Besides our three little girls, we have their big sister Julia at home, our sons are grown and on their own. Julia is pretty independent, almost 17, and getting ready to get her license and finally get to drive her brothers (now hers) Camaro. I think that having a sister that needed so much attention was hard for her 8 years ago; it would be, she used to be the only girl and then had a sister that took her parents to doctor’s appointments sometimes 5 times a week. Now she has three sisters who have lots going on. When Meghan was a baby, Julia used to help with her therapies, she colored pictures for the therapists to use for other kids, she was a huge help. Today she is in a musical theater group that includes 8 young men and women with Down syndrome. I think being with these young adults and getting to know them has shown Julia that her sisters can and will have futures too. Sometimes we can get mired down in today and fail to see what lies ahead. It has also been a wonderful thing for us to witness, they love being in the productions and the other students are very helpful and kind to them, Julia says, very protective of them.

We have taken all there little girls to Julia’s performances, and the other children’s parents are also in attendance, but try as we might, we cannot get them to talk to us. There is a new young man in the group and we were walking behind him and his parents to our cars, they saw us but did not engage us in conversation, I admit I was befuddled; I ache to talk to other parents, why would they do that to us? Surely they see us with our three daughters; I just cannot understand their reticence. Does something happen after puberty in our kids that closes off parents to one another?

Today will be a busy one with dentist’s appointments for Amanda and Meghan. I hope they can see Amanda; she has 5 cold sores on her mouth right now. Poor sweetheart slept with us last night she was so miserable. She slept well though, hope it is not a trend; we already have Meghan sleeping with us.

Yes, we advocate the family bed, but Kara and Amanda rock themselves to sleep, even after falling asleep first and being placed in bed, they pop back up and rock for a few minutes, or in Kara’s case, sometimes much longer. No way can a person sleep with that going on.
I believed the rocking would diminish over time, but I am finding out that habits a child acquired and did for 3 years are pretty well ingrained in their coping skills. Their so called orphanage behaviors are hard wired. Sometimes it feels like we failed somehow because being in a loving home did not help them overcome this. Then I think about other bad habits some of us have, nail biting, chewing on pencils, chewing on hair, etc, and I guess I have to cut them some slack? After decades of living with one nail biter, I can tell you, I do not think he will ever stop doing it. I have bad habits of my own too…

I am worried about Amanda though, she is not eating very much because her mouth hurts, but her pediatrician says it is a virus, he cannot help her, for us to treat the symptoms, and doesn't that make you want to scream? All she can eat is yogurt right now; anything with even a tiny bit of acidity hurts her mouth. She managed peas and brown rice yesterday. Amanda is itty bitty; she does not have the weight to spare. It makes Tom and I so sad to see her so miserable. We were up with her at 1:30 this morning, she was moaning and so distraught and we were zombie like trying to console her. We gave her ibuprofen; we held her and rocked her to sleep. She seems a bit better this morning, those small steps are important. We would appreciate prayers for her recovery.

We have been working on getting Kara a communication device, the request has been sent in to DD, hopefully long term care will cover the cost, I doubt AETNA will, but you never know. We are waiting to hear when the specialist will come and evaluate her. Yesterday the girls got in their wading pool for a short time, it is still hot here, but the day went from hot to windy and cooler very quickly. Amanda was shivering in no time, Meghan jumped out and Kara was the last one to exit. She was in there saying ba ba ba ba, ha ha ha, da da da da, but get her out, and she says nothing at all. I suppose keeping her in water all day is not an option, but it does illustrate that she has some sensory issues. That is another evaluation we are waiting on for both Kara and Amanda.

Time for breakfast for all and then homeschooling, I need to check school emails as well, we are having an issue with her Odyssey Math program. See you tomorrow.

Please donate to our Buddy Walk!

It is that time again, our local Buddy Walk is coming up soon, Sunday October 26 from 2-6:00 PM at the DeMeester Bandshell.

Our Buddy Walk sometimes gets ignored by the press, such a shame as it is always a wonderful event with so many families attending. I encourage all of our friends and family in Tucson (and all over AZ) to come and show your support of our girls and all people with Down syndrome.

Please give a little to our fund, our goal this year is $500, all the donations go to SANDS and they in turn support The Down Syndrome Connection and Crecer de Amor, local support groups. Go to the SANDS website and read about all they do for our community and Southern Arizona.

Just a nice video

Not saying I approve or disapprove of Mc Cain's choice of Palin, but I did like this short video.