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.
Here is a little video I took of the kiddos a couple of weeks ago. They crack me up. Hunter is such a GREAT big brother and is so patient. Ella will do more for him than anyone else. I was trying to get a little video of some of Ella's new words, of course she would not cooperate for me so this is all I got!
Well, it's that time of year. That time when people think of the changes they want to make in the new year, I am no different. This year I turn 30 *gasp* yes the big 3 - 0. Really the number isn't that big a deal to me, it just drives home the fact that my life needs to change. My big goal for this year and to continue for life is health. Yes of course that means losing weight, more about that a different time, but just as important is my mental and emotional health. My 20's were a rough time for me, and I vow to make my 30's great!!
So resolutions.....my big one is that I want to live in the moment and to focus on how blessed I am. Not to let anxiety and frustrations get the best of me, not to let others' drama interfere with my peace : ) I particularly wanted to apply this in the area of the kids. The last couple of months Ella has had me at my wits end when I take her anywhere. She pushes me, with her behavior, to near tears (occasionally to tears). I get embarrassed, frustrated and begin to doubt my ability to "deal" with her. This little girl knows how to push my buttons in a big way. So I resolved to change the way I handle her, not to let it get to me etc. Well, that did not last very long at all.
Yesterday Ella began private physical therapy. She received PT from 18 months old to 3 years old at the Spokane Guild's School, where she was in a group and received her other therapies as well. She turned 3 on August 30th and began public school on Sept 8th where she has received therapies since. We had to wait for our insurance to pick back up on Jan 1st to begin outside therapies, we get 30 sessions a year and had used all of those in just a few months at the Guild School. Anyhow, yesterday was day 1. Ella was HORRIBLE. This young sweet physical therapist (brand new to this facility) was trying to re-eval Ella and set some goals for her. Ella did NOT do one single thing that therapist asked her to do. She was screaming, SCREAMING NO NO NO NO NO NO, NO WAY, etc. I would pick Ella up and take her back to the therapist trying to get her to cooperate so then we added tears to the screaming. For an entire hour this went on, I tried giving her a timeout, nothing worked. Needless to say by the time we got home and I put her down for a nap I was frazzled, pissed, frustrated and very near tears. 5 days into the new me and I have failed.
Chris was here when I got home and I told him about Ella's appointment. He asks me "what would you do if Hunter did that?" I said "Hunter would NEVER do that, not when he was 3 and not now." Chris says "Well what if he did?" Seriously......then he wouldn't be Hunter!!!! I'm not saying that Hunter is a saint, sure he has had little break downs from time to time but I am always able to reason with him. If I tell him to go to time out (when he was little) he would go to time out and sit there, he didn't have to be held there. If I said to him "if you don't stop you won't be able to play outside" the behavior stops immediately. You get the point. With Ella there is NO reasoning, not even a little bit. I guess it bothers me so much because she is smart and she knows exactly what I am saying to her and understands it and yet she is stuck. I really believe the kid gets stuck. I don't know if this has to do with her having Down syndrome, but the inability for her to deviate from her plan is a real problem. I think she just really is physically or mentally unable to do it. This all comes with a complete meltdown, real tears and everything, I can see that it's not an act, I can see that she is frustrated and yet I don't know how to help her get over this. It's interesting to me, the special ed teacher at her school said to me that she has "no cognitive or social goals for Ella" and so she only works on communication stuff with her. But do other 3 year olds act this way??? None that I know. What I also find interesting is that she mostly just has this problem with me. So am I too hard on her??? I just don't get it. She does great at school, sure she has her stubborn streaks and little battles with her aide (who does not back down to Ella, which I love!!!!) but it doesn't end the way it does with me.
At home I rarely have a problem with Ella. I think it's because home is safe, Ella is able to roam the house freely, does not have to stay with me, and knows what she can and cannot play with. In public she usually has to hold my hand, be carried or be in a stroller because she is a runner. If she has the opportunity that kid is gone.
I think part of the issue at her PT session was that we walked into this brand new room, there were toys, mats, balls, windows all around and she began her frantically running from one thing to the next routine ( I think this is her behavior when she gets overwhelmed or overstimulated.) But then Ella does not have a problem at all doing what she is supposed to in a class with 14 other kids all running around. I just don't get it. I don't know what to do with her. This behavior is not acceptable to me and yet I refuse to never take her anywhere. What to do???
On the plus side Ella's speech is taking off. She is frequently putting together 2 and 3 words and is becoming more and more clear. We start private speech therapy next week and I am so glad!!!
Before Christmas I had this picture taken of Ella as an angel. I love the picture!!! Hey, I can pretend my child is angelic like right???? One can dream : )
Man oh man were we spoiled this year : ) The kids had a lot of fun on Christmas, though Ella had a pretty nasty little cold that developed as the day continued! I had not very much fun finding places for all of their things in the days that followed : ) Well, here are some pics of the kids and because Blogger is annoying the crap out of me I'm not even going to attempt to write captions next to the pics.....
The first pic is Hunter writing a letter to Santa, the second pic is of his letter. Let me just tell you, in September when he started Kindergarten his handwriting was, um....not able to be read and look at it now!!
I am a mother to two incredible children. Hunter is 8 years old and Ella Grace is 6 years old. My children are my life, my true joy. My life was turned upside down when my daughter was born and surprised us all by having Down syndrome. Since her birth I have come from sorrow and a sense of loss to greater happiness than I ever imagined and I owe it all to The Amazing Ella Grace! Contact me anytime by email email@example.com
My face may be different,but my feelings the same.I laugh and I cryand take pride in my gains.I was sent here among you to teach and to loveas God in the heavenslooks down from above.To Him I'm no different,His love knows no bounds;It's those here among you, in cities and townsthat judge me by standardsthat man has imparted,but this family I've choosenwill help me get started.For I'm one of the children,so special so few,that came here to learnthe same lessons as you.That love is acceptance, it must come from the heart;we all have the same purpose,though not the same start.The Lord gave me lifeto live and embrace,and I'll do it as you do,but at my own pace.-Unknown