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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Saturday, March 20, 2010

World Down Syndrome Day

Yes, I have been thinking about this day since January, and for some reason, the idea bothered me. You see, we celebrate our girls uniqueness every second of every day. We are a family of 10, 3 of whom have Down syndrome, we belong to numerous groups on-line, the local group here in Tucson, and we have hundreds of friends whose children also have Down syndrome. Having children with trisomy 21 is normal for us, it is our life, they are our daughters, and so, when there is a day set aside to celebrate them, we are scratching our heads. We do not need a day set aside to marvel at being their parents!

OK, so I am likely looking at this wrong, what the day is for is to get others to see how wonderful our children are, but I unless you actually have a person with Down syndrome in your life, you will never know the joy, the challenges, the love, and the frustrations, and the pride when they learn hard earned skills.

You can read about dozens of families, you can see TV specials, and Youtube videos, but you will not live the lives we do.

I do not think people are good at envisioning lives different than their own. You can look in our windows and think that you could never do what we do, that perhaps our lives are more complicated than yours, that we give up too much for our kids, and perhaps you cannot see sacrificing the life you have now for one like ours...the truth is, I do not see my life being much different than it was 20 years ago, being a younger mom with active boys who broke things, fought, were always active (until we got a gaming system anyway). Small children require lots of energy to keep them safe and happy, my daughters require no more than a typical child would. The biggest difference to me is the development of my 3 youngest girls compared to their 5 older siblings.

When I had my first, Fred, he followed the developmental charts like clockwork, in fact he was pretty much spot on for every single milestone. Terry, my second, walked a tad later, talked a lot later, but did everything else "on time". Eric did everything early; crawling at 6 months, walking at 9 months. Brian and Julia were about the same as Fred, though Julia talked before any of her brothers. They all said it was because she was a girl, and girls were always talking, I am sure I do not know what they meant.....

Then we had Meghan, we learned that we could not take the developmental milestones for granted with her, she would actually need to be taught to do most of the things our other children did on their own. The main issue with Meghan's health was a floppy airway (trachealmalacia) GERD, and very low tone (hypotonia) Her floppy airway meant her oxygen saturation was lower than your or mine, in the low 90's, sometimes dipping into the high 80's. This meant she did not have the endurance to be a very active infant. Added to that was hypotonia, which made it difficult for her to learn to hold up her head, roll over, sit up. She had physical therapy from age 4 months. With therapy we helped her muscles get stronger, her nerves to "wake up" and send the message faster to the muscles so that she could do the things she wanted to do, therapy does not "cure" hypotonia, but it does improve it. Meghan was also hypermobile, (very flexible and loose jointed) pretty much goes hand in hand with hypotonia, and we could not pick her up like we did our other children, her joints would pull apart slightly.

Each and every milestone our children met was celebrated, but we all did the happy dance when Meghan finaly mastered hard earned skills. Having her actually showed us how much we took our other children's development for granted and what a miracle having a child with no special needs truly is. We embrace each of our children for the individuals that they are, and all of them are special too.

Wednesday, March 17, 2010

Happy Saint Patricks Day

I know the day will be lost on my three youngest, in fact, I am certain my husband and Julia forgot completely, no trace of green on either one today! It was always one of my favorite days growing up! I will show the girls a little cartoon about it, I am a wee bit Irish, so Meghan is too, not certain about Amanda and Kara, but I kind of doubt they are LOL.

Today is also Anna's birthday, Terry's girl friend, Happy Birthday Anna. I hear Amanda from her room, the day has officially begun, all the little girls are awake and ready for breakfast!

Wednesday, March 10, 2010

The girls this week

I tried hard to get one of all three together, they refused to sit by each other, so this is the best I could get! Little stinkers.

Amanda is walking to mommy. She is taking 10 or more steps at a time now. I think I was right, she will be walking by her birthday! The OT said today "I have a feeling she won't just walk, but will run". I agree, Amanda is FAST, and I will also be running to get her, maybe I will lose some weight chasing her too.

Today I set out to get some good pictures of Kara, I can get plenty of Meghan and Amanda, but Kara moves, ducks, turns her head and does not cooperate. So most of these were taken today, some of Meghan and Amanda were taken in the last week or so. I adore Kara's brown eyes, I will forever remember looking into them the first time we saw one another in Vorzel. For me it was love at first sight! Finding her was a miracle for me, for us, we went through hell to adopt in Ukraine, bringing her home was a gift from God.

Put that thing down mommy, I do not like pictures!

Meghan loves her Barbies, she said, "No not my picture, take Barbies!" They both had bad hair days.
Happy Amanda, she has begun to smile for the camera, she adores getting her picture taken most of the time now. She is so dirty here, from playing outside and eating dirt! Ah to be a little kid again. :o)

Had to do my color correction again, even though Amanda's skin looks almost normal again from her carotenemia, when I take her picture with flash, she turns a nice golden yellow. Her skin has trapped the pigment, it will take a while to resolve...especially when she loves carrots, squash and sweet potatoes so much.

Amanda's face looks so round in her pictures, though she is still very tiny and very skinny, despite the pudgy face. We were wondering today if she stopped growing completely, but she has outgrown some clothes and gained 6 pounds, so we know she is growing, she just may stay skinny, wish I were her.

Kara the couch potato, what do do with this little munchkin?

Beautiful Kara! When we adopted Kara I was amazed how tiny she was for a 3 year old, and now, I am amazed at how big she is for a 5 year old, she is growing like a weed! Her bone structure is very large and she is very heavy. She is also chubby, she is so happy to lie down and pretend to read a book. (Time to get get blood work for anemia and hypothyroidism, don't you think?) She is lazier than my sons were in in adolescence.
Kara is a funny little girl, always laughing and happy, but she sees my camera, and her face goes blank, wish I knew why, it is so hard to get a smile from her for a picture.

Cover model! This picture turned out so good, Amanda looks like an angel!

My pretty little Meghan in her leotard, she found this in my old Ebay bins from a couple of years ago when I used to sell new and used children's clothing. She put it on and then grabbed my camera, and told me to take her picture, she posed for a bunch of them, this was my favorite!

Meghan's alopecia is on the rampage again, alopecia is like that, it progresses and regresses with no rhyme or reason. We though we had helped with a gluten free, casein free diet, which has improved her behavior and overall health, but the hair loss, well, it gets depressing for me, but as long as it does not bother her, then I will not let it get me down. What is more upsetting is the way people stare at her, OK, she already has Down syndrome, so people do stare (wish they would try harder to be subtle about it, she is beginning to notice) but to have this hair loss too, well, people are NOT nice sometimes. Her left side has 40% hair loss, and the other day I saw a dime-sized spot on the right which filled in completely, but was totally bald two years ago, so I am not certain what to think, will the right go now and the left grow back like before, or will she finally lose all of her hair?
She has very little body hair, her arms and legs are smooth, she still has most of her eyebrows and eyelashes. Having been hairless myself during cancer treatment, not having lashes means every little thing gets in your eyes, I hope she at least keeps her lashes. She has lost both brows and lashes before.

Just too tuckered out to stay up, these little girls can fall asleep faster than you can blink sometimes. LOL Amanda on the left, Kara on the right. They cannot sit near each other without hair pulling when they are awake, but seek each other out when they are tired, go figure!
Amanda is slowly blooming like a beautiful and rare flower. All of us are amazed at the changes in her personality, every week she opens her heart a little more to love, and she is learning to express her affection without the fear she used to show. today she kissed her OT on the cheek! She still has many repetitive behaviors, grinds her teeth, breathes heavily when she is stressed, she still has autism BUT....she is doing so much better.
Kara and Amanda are too fond of rocking and bouncing. I wonder if they will ever stop? Whenever they hear music the start bouncing off the sofa cushions, they usually do it on beat, completely synchronized! :o)

Tuesday, March 2, 2010

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.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video