The girl has moves....

A couple of weeks ago Ella kind of disappeared. So I went looking for her and found her in her room, she had taken off her clothes and then dug through her dirty clothes and put on mismatched socks. Hunter was in his room playing with Legos and listening to his Chipmunks CD, Ella was rocking out. I ran down and got my camera and had Hunter start "Ella's song" over again! I'm not sure where she picks up her moves but they are hilarious. I once was in a store and a lady came up to me and told me "people with Down syndrome FEEL music better than the rest of us." Not sure why she told me that, but okay.......so here is Ella feeling the music : )

Photo and video editing at www.OneTrueMedia.com

Happy World Down Syndrome Day!!!

Today, the 21st day of the 3rd month, is the day that we celebrate across the world that special extra little chromosome that touches so many of our lives. The significance being 3 copies of the 21st chromosome, Trisomy 21 aka Down syndrome.

There are so many things I could write as I sit here and reflect on my life, thinking about how much has changed since I was told my daughter has Down syndrome. SOOOO many things. I will just make it simple and say that since Ella's birth my life has changed completely. I have friends, good friends, that I have met because of her. Our family is so much closer because of Ella. We live in a new state that we love, I have a job that I love (working with kids with disabilities) all because of Ella. I have learned to celebrate and truly feel the joy with every little milestone. I fully realize just how blessed I am.

Ella is quite the amazing kid, she is persistent, stubborn, smart, loving, sweet, sassy, STRONG willed, empathetic, (I could go on forever,) and most of all AMAZING!!!!!

Here she is 2 years ago on this day!

And yesterday, looking like a mess : ) We had gone to Special Olympics young athletes and then for a picnic at Lake Coeur d'Alene.

Best Friend

Ella goes to public preschool now, which it dawned on me that I never updated on my blog how things at her school changed after the first week..... I was NOT impressed at all Ella's first week of school. I was not impressed with her teacher nor the aides in her class. When I asked how she was doing in class I was told "she's cute," and then they walked away. Great. My child, who in case they didn't notice doesn't really talk, is not going to fill me in on how the day went. I was just so upset (there were several more incidents) and was racking my brain on how I could pull her out and pay to put her in another school. Anyhow I requested we switch classes, praying that it would be at least a little bit better, and to my amazement it ended up being the perfect place for Ella to be. Her teacher is wonderful and her aide is incredible, she is the perfect combination of loving and having the ability to push Ella and best of all does not cave to Ella's stubbornness : )

Anyhow Ella's class is full of "typical" kids. Ella is half their size and obviously doesn't communicate anywhere near their capabilities. In the beginning I was so worried about Ella being treated like a baby or simply being ignored. However in the past couple of months something quite amazing has happened..... Ella has a best friend.

By all of the teacher's accounts these two seek each other out all day long and actually play together. At the end of class they have a closing circle time, and they receive stickers before they are dismissed. Well Ella and this little girl have to compare stickers, then they hold hands and the girl walks Ella out to her locker and gives her a hug. Seriously, it's all I can do to not tear up everyday. I have heard lots of stories about these two, one of my favorites is this one.... the class was out on the playground one day, Ella and this girl were playing together and hand in hand climbed to the top of the twisty slide. The little girl says lets go down the slide, Ella says "no." (she is afraid of big slides because her trunk is so weak and it is hard for her to hold herself upright while going down the slide.) The little girl tells Ella, it's okay I'll go down with you, Ella says no. So the little girl gets off the slide, holds Ella's hand and walks her back down to the ground and they go off and play something else. What 4 year old would do that???

The mom to this little girl told Ella's teachers that she told her mom "Ella is my very best friend." **tears again** The mom told her teachers how glad she was that Ella was in her daughters class. We then received a card in Ella's locker, an invitation to come and play at her house.

The teacher also told me that Ella and the girl were playing a game at the table. Ella patted her on the arm and said "I like you," to which the girl turned to her and said " I like you too Ella." Um, I could just die from shock. For Ella to put 3 words together and for the teacher and a 4 year old to be able to clearly understand her is just so amazing to me!!!

I really can't put into words how this all feels to me. I remember when Ella was very little and we still lived in our apartment I was sitting out on the patio watching two little girls jumping rope and talking and giggling with each other. I got so sad. Will Ella ever have that? Will she ever be that giggly little girl who has a true girlfriend? It hurt to think this may never happen for her. Now here we are in her first class with "typical" kids and she already has a friend, a real friend. I happen to think that this other little girl is quite special, I mean think about it, at the age of 4 she is befriending a little girl who is much smaller than her and doesn't really talk, yet she treats her like a peer, she doesn't baby her but realizes that Ella does need help with somethings. This friendship just makes me feel so.....I don't know.....just knowing that there are kids out there who will befriend my daughter just really warms my heart.

So, the last day of school before Valentine's Day Ella's class had a teddy bear tea party. The kids were to wear their favorite party clothes and bring a stuffed animal to school. Ella wore her tutu and a little crown. Well as we were walking into school her little friend ran up to us and said that she brought Ella a hat to wear like hers so they could match. Yeah, you guessed it, tears again. I was able to catch a few pics (they aren't the best) between dropping her off and picking her up, so here they are, Ella and her best friend : )

Ella before school.

Helping push Ella up to the table.

Happy Belated Valentine's Day!

Hunter and Down syndrome

I've been asked by a couple of different people here lately if Hunter knows that Ella has Down syndrome.

The simple answer is yes, Hunter knows that Ella has Down syndrome. Does he know all about chromosomes etc, no.

Hunter was 2 years and 4 months old when Ella was born. Ella was born 6 weeks early, I had a C-section, and we came home 2 1/2 days later. When we came home from the hospital I was a mess (to put it mildly,) and Hunter was very angry at me. I think he was punishing me for abandoning him, we had never been apart and this all happened quickly, no time to prepare, then I come home crazy and crying. Anyhow, Hunter remained angry at me, lashing out at me for several weeks, but he was always nothing but sweet to Ella.

I guess Down syndrome was just always apart of our vocabulary, especially in the early days. Hunter attended most of Ella's appointments with us, so he heard about it often. Those first weeks are a complete blur to me, but we must have told Hunter the same thing we tell him now, that Ella was born with Down syndrome, which means that she will be able to do the same things as him she just needs extra help learning how to do them. Before Ella was 7 weeks old (I know this much because my mom was still at our house and she stayed till then,) Hunter was riding his little police motorcycle around the house. Our little game was for me to ask him where he was going. His answers always varied, from Walmart to work. Then of course I would say where do you work, he was mostly a policeman (go figure), a garbage truck, yes I said truck. So this particular time I asked him where he was going, he said he was going to work. I said "where do you work," and my 2 1/2 year old replies " I'm going to help people with Down syndrome." A bit shocked I said "Where?" surely I hadn't heard him clearly, he sighs a big sigh clearly disgusted with me not hearing him and says loudly "I SAID I'M GOING TO HELP PEOPLE WITH DOWN SYNDROME!!!!" Then he drives away, I of course am left in tears.

In Texas our services were in home and of course Hunter made himself a big part of that, it helped that Mrs Deena loved Hunter too !! After they would leave Hunter would make his baby doll do tummy time and other exercises they had been doing with Ella, it was too cute. Once we moved here to Spokane and Ella started the Guild School, Hunter also came along. We met friends that have a son Ella's age with Down syndrome and a boy a bit older than Hunter and the whole family became instant friends. For awhile I wondered if Hunter really understood that Ella was different than other kids, I wondered if he thought everybody had a little sister or brother with Down syndrome. After all his best friend had a little brother with Down syndrome, his little girlfriend at preschool had a brother with Down syndrome and we went to playgroups and such where of course there were kids with Down syndrome. So Down syndrome was a huge part of his life.While the kids and I were in Georgia this past summer I got my tattoo with the Ds awareness ribbon on it. I was talking to my dad and Debbie about something and must have mentioned Down syndrome. Hunter stopped playing cars and said "why do you always say that word?" What word, I asked. "Down syndrome." Well that took me by surprise because I had always said THAT word and thought he had a fair understanding of what it meant. So I said to him "well Hunter, you remember sissy had Down syndrome..." and he interrupts me and says "NOT anymore! She's 3 now and doesn't go to the Guild School anymore and that means she doesn't have Down syndrome now." Of course I teared up (notice a theme here) and had to explain to him that all kids leave the Guild School when they turn 3 but that that doesn't mean she doesn't have Down syndrome anymore, that she still needed help but would go to a new school. If only she stopped needing help at age 3, wow that would be something : )
Since we had our little talk Hunter has been quick to point out people with Down syndrome out in public. He will say "hey, we know that man with Down syndrome. We met him at Jenny's." (Jenny's is a restaurant where every other month there is a breakfast for families.) Usually it's not someone we know but I still think it's neat that he recognizes.

Hunter has always been so very patient with Ella, very caring, and very protective. He likes to tell us when Ella is doing something often saying "she could get hurt." I really have conflicting feelings over it all. On the one hand I of course know that Hunter's life will be better for having a sister with a disability, that he has learned compassion and that people are born all different ways. I like to think that he will be the one that will stand up for a kid being picked on, that he will befriend a kid who is struggling. On the other hand I worry that Hunter worries too much. He is only 5 and has designated himself Ella's guardian. I blame myself because he is so much like me, he has a lot of anxieties, some of which have affected his schooling. His teacher at our last conference said that Hunter often has trouble focusing on his work because he is so worried about the other children. If someone gets hurt or needs help he is always the first one there, which has it's good qualities but he also just needs to be 5. Five year old's should not think that way.

I believe things are getting better though. I have had several little conversations with Hunter about it being my job to worry about Ella, that I am the mommy and that his job is to be a 5 year old kid. Also I got a phone call from his school counselor, (he's in Kindergarten and goes to a Kindergarten center, kids from several elementary schools) which is scared me. Luckily she just said that she wanted to start a group for kids that have siblings with special needs. Hunter's teacher had told her about Ella, and she wanted my permission to include Hunter in this group. Apparently some parents had declined. I was so happy and of course said yes! There are only about 4 kids in the group, they have siblings with all different disabilities. They have discussed things such as what is good or bad about having their siblings, how sometimes mommies may be sad or worried, etc. I think it is so good for him just to hear other kids going through the same things as him. Of course all of their conversations are while they are playing games etc, and Hunter LOVES the days that Mrs Marsh comes and pulls him out of class. It makes him feel special, which he so needs!!!

So there ya have it. Hunter knows Ella has Ds, he doesn't know the science behind it, but he knows that she is different. As he gets older I anticipate more questions but for now I think that he really has a good grasp on it, especially for a 5 year old! I am just so proud of my boy, he has endured more in the past 3 1/2 years than most 5 year old boys, and has come out a very compassionate, sensitive, caring, smart, social, funny little boy. I just love him to pieces, he is an amazing brother and role model for Ella!

Wordless Wednesday

(Except for the words on her shirt, which says SMART COOKIE!!!)

With a heavy heart.....

Yesterday I received some sad news. A lady who was a huge inspiration to me in Ella's early month's of life was killed yesterday in a tragic accident.

This lady, Terri, is the mother of 3 beautiful children, her youngest daughter (with holding the name,) is only a few days younger than Ella and also has Down syndrome.

When we started in home service shortly after Ella's birth I asked her Interventionist, Deena, if there were any other families with babies Ella's age with Down syndrome. I was desperate to connect with someone, a mother who was experiencing the same things that I was. After signing a release so that they could give my name and number out, I was able to connect with two great ladies, Shelia and Terri. I still remember so vividly my first meetings with both of these moms.

Terri had shared with me that when she first saw her baby she knew that she had Down syndrome, and in that instant she was completely at peace with it. She said she knew it had been God's plan. She knew that her husband, herself and older children had moved back to Texas because God knew they would need the extra support and help of their family once the baby was born. She was so calm and had such a good perspective about having a baby with Ds.

Those of you that have read my blog know that that is not the reaction I had when Ella was born. I was so hurt, so sad, I did the "why me," "why poor Ella," "why now?" thing over and over. I felt so alone and was deeply, darkly depressed.

When I met Shelia she shared with me some medical issues that she had had and that she was just so happy to have a baby, regardless of her having Down syndrome. Shelia was juggling work and motherhood, and all with a big smile on her face and an upbeat personality.

Meeting these two woman was huge for me. It was looking through their eyes that I was able to see my situation in a different light. After each play date we had I would leave feeling so uplifted. Gradually acceptance and joy crept into my life, and I owe a huge thank you to Terri and Shelia.

As I sit and reflect after the news of this tragedy, it is blindingly clear how blessed I am, how short and uncertain life is. I grieve for Terri's husband and those 3 babies. I hold my babies extra close and appreciate them even more.

Here are a few pics of the 3 girls from our early days in Texas.

Here is Kenna (Shelia's daughter) Ella and Terri's daughter

Thank you Terri, you were an amazing inspiration to me.