I love the look of absolute peace on Elise's face. I wish she could always feel such peace.
I know it is not possible nor required for everyone to understand what we go through with Elise but having others understand just a little helps.
My sister watched Elise and one night texted me saying how Elise had a rough night and how difficult it was to listen to her cry and be inconsolable. She then said how it makes her want to cry for her.
After I got this text I knew exactly how my sister felt. Ez and I find parenting Elise difficult. Both of us want to fulfill our parenting roles with her but at times it isn't easy. Ez wants to fix any of Elise's struggles and disabilities. Being a mom I want to nurture and make everything "better." With any other kid who cries, when you hold them you can console them and make it all right. Elise doesn't get that same comfort. I want to and try to hold her but she is fighting something inside that sometimes I can't make better. So yes I knew what my sister was saying.
She said, "She's the most endearing child I've ever been around. :) I really am grateful for this opportunity to get to know her, to have her light up our lives, and to love her. That's something you can't get from just a visit."
What she said means so much to me! So many others love her as well and say things similar to this and I can't help but not be grateful that she's mine. We are blessed and grateful to have such a supportive and loving extended family on both sides!
I was in the other room when I heard Bryn yelling, "Mom, come here fast!"
While Bryn was taking a shower, Elise came into the bathroom and seeing the water, wanted to get in too. I try to tell people about her fascination with water and that it's more than "liking" water. It's almost an obsession!
She climbed in the tub with her jammies on and laid down. This is exactly why I am just a little paranoid for her safety around water!
There is always an adventure every day with Elise around! And I love it! Most of the things are so unexpected and it just makes me smile. What a silly girl :)
How can you not help but smile and laugh when you look at her?!
Elise motor planned how to climb in to the stroller and sit down by herself!!! I just sat there watching her figure it out. It took her a good 3 minutes but she did it.
She got in, now to figure out how to move those legs?
Eventually her legs came out from under her. Success! She loved the enveloped feeling of this stroller. She kept moving her body from side to side, getting as much input from it as possible.
The genetic counselor called this afternoon. I didn't realize how nervous I was until I saw my hands shaking. She told me Elise's results were normal.
I was so confused. I started crying when I hung up the phone. I kept thinking I should be excited, grateful and relieved at this news. Why was I feeling this way then? It was the oddest mix of emotions and I was really flustered.
All I could think about was getting out of there and sorting through all this in my head. I was already planning on going to the temple so it was perfect timing.
As I was going over everything, I realized I had already grieved and gotten to the acceptance point of Elise having Rett Syndrome. I have grieved and accepted Elise having autism. I have put my whole heart out there with each one. For each one of them it has been emotional. I feel like I can't fully move on until I know and now I have to wait some more.
Don't get me wrong, I am very grateful and relieved it is not the classic Rett Syndrome! It is a blessing.
I am mostly confused now. The geneticist and genetic counselor are as well. Elise's primary diagnosis from the geneticist was Rett Syndrome and both of them were so sure. I was sure. She fits the mold. When we talked on the phone she said she still believes there is something going on, given Elise's history and presentation.
The next step is to do a more extensive test. This will test 20 genes rather than 1. Because of the increased amount of genes to test, it will take 4 months to get results back. They will be looking at Atypical Rett Syndrome and Atypical Angelman Syndrome. With each of these, they are either less or more severe than the typical form of that syndrome. If Elise did have either one of these she would be on the less severe side I believe.
I feel peace knowing she is getting all the therapy she needs, no matter what she has. I am grateful the test results came back today. It was a tender mercy. I prayed the other night that we could know before Monday, because Ez and I will be separated from each other during next week. I didn't want to find out without him there and able to talk to. We are being watched over.
So for now I won't get worked up on what she may have. It's too hard.
Come what may and love it, whatever and whenever it may be!
Cal is 11 months today.
He is always holding 2 things in his hands at all times and I love it. Today he discovered cars and figured out how they go back and forth. He pushes trains and hairbrushes across the floor. He stands by himself for long periods of time. It probably sounds cheesy but I am so elated at all this! I love watching him play. It makes me so happy.
I always thought it would be hard and somewhat weird when Cal passed Elise up in pretty much everything.
It has happened though and I don't feel any of that.
I know it is because of God's grace that I can feel peace and contentment with each of them. I have been able to separate Elise from Cal without comparing them and I believe that is a gift I've been given.
The peace the gospel gives me is undeniable. I know she has a specific purpose here and can fulfill it no other way than with the disability she has. I am grateful for each of her successes and am so grateful for Cal's successes.
Yes Cal can say "mama" and "dada" and play, and use his hands, but Elise can light up any room with her contagious smile and personality. Both of them are progressing, one faster than the other, however one of them specifically is helping the rest of us progress eternally.
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!