Elise has been making some good progress however this last week has been a bit frustrating. Up until now Cal has pretty much been non-existent to her. She has started hitting him and they are hard, repeated hits mostly on the head. Sometimes she'll grab his clothes and scratch him. She's started biting again and the therapists are the victims mostly.
I feel bad.
I feel bad for Cal and I feel bad for Elise.
Poor Cal cries and cries and obviously something's going on with Elise that I don't know about or know what to do. I'm hoping it's a phase!
There are so many things I should be doing every day with her. It's hard not to feel guilty when I don't do most of them. I know all of these things are to help her but either I don't have the time or the energy to do them.
One day at a time.
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 feel like I am starting all over with the grieving process. It is hard. These lyrics are beautiful and sum up how I feel.
You have nothing to fear from the journey,
We met with the geneticist for 1.5 hours. He observed Elise, asked us lots of questions, went over our family history, then did a full assessment on her. Every so often he would step out of the room for a few minutes.
My palms started to get sweaty and I could almost feel my blood pressure rise. I knew that at the end of this visit either we would come away with a new diagnosis or feel content with the one she already had.
I knew the answer before he even said it. I've known for awhile but I've kept hoping I was reading into it.
The geneticist clinically diagnosed Elise with Rett Syndrome.
She will be getting blood work done in the next couple weeks to confirm it, but on his progress notes, that was his primary diagnosis.
I remember the first time I realized Elise more likely than not had Rett Syndrome. I grabbed her ipad and looked up the symptoms because it had been awhile since I had looked them over. I read them over and over then got this sick feeling and I knew. I sat on the bathroom floor and cried.
I kept trying to forget about it until our appointment but this last month when I saw our pediatrician, she pretty much confirmed it to me as well. I remember her saying, "I'm not so sure it's autism, I think Elise has a syndrome."
At another appointment she kept talking about it like she knew she had it. I realized the pediatrician had to be quite certain that's what it was in order to be talking like that to a mom. We as mothers get worked up easily, especially when it comes to our children and there's no way she would bring it up let alone say that's what it was unless she knew of a surety.
At the end of our visit, the geneticist came back in, turned to me, and asked me what my gut feeling was. I told him I thought she had Retts. He said, "Well I agree with you."
I had a hard time concentrating on what he said after that. A dozen images flashed through my mind. Little girls in wheelchairs, not speaking, not using their hands, and using an eye gaze device to communicate. I can't express how scared I was. Scared of her possible future, scared of our family's possible future, scared of the what ifs, scared of all the possible "endings," and scared of not ever hearing my little girl talk to me. It hurts.
I find when I am talking with doctors and therapists I step into nurse mode. The nurse in me comes out and I treat Elise like she's a patient. I hold myself together and can think logically but when I leave, mommy mode takes over and I'm not so strong anymore. I kept telling myself I was getting carried away and hopefully she wouldn't regress that much and to hold on to hope but in the moment, it's hard to think logically.
As I was walking to our van in the parking garage I heard the scripture distinctly in my head saying, "I will be on your right hand and on your left and mine angels round about to bear you up."
That night we told the kids that she didn't have autism. Brock started cheering and was so excited. He kept saying, "Yay she will be able to talk now and play with me!" Mine and Ezra's heart broke. We told them she most likely will never talk. That is the worst part of it. Sometimes I just hurt so much from wanting to hear my little girl tell me she loves me or what her favorite color is.
I will never give up hope or stop believing in miracles but every doctor we have talked to has said her form of communication will come through a device. I am even more grateful for her ipad now.
The rest of that day and the couple following it were hard. I felt like I had to almost go through the grieving process again.
Elise had a REALLY rough day at church. Thankfully my parents were here to help me out. All of it got to me and I left my parents with the kids and went on a drive by myself. I couldn't take it anymore. Sometimes it's just hard. It felt good to clear my head and breathe.
I think all the emotions of our upcoming geneticist appointment are getting to me. I'm ready to know and ready to move on and accept our new possible future.
Ez and I took a tour of the Autism preschool Elise might be attending in a few months. It's weird because since day 1 of us knowing she had autism I've been so anxious to get her as many hours of therapy as possible, preferably 25+/wk.
When I found out this preschool does 30 hrs/wk plus our speech and OT on top of that I was so excited. But when we drove home from the tour, all I could do was cry. This was not the reaction I had thought I would have knowing we were so close to what I've been wanting since February.
I guess the realization of my little 2-year old leaving me from 9:00am-3:00pm every day all year-round hit me. She still is so little; too young to be gone away from home that much. I don't want her to leave and I don't want her to go there. It hurts to think about.
I know it's all very selfish of me, but all I want is for her to be here with me and for me to be a mom to her, nobody else. I know that that can't be. The only way for her to make these big improvements is to have as much therapy as possible; it would be wrong of me to rob her of these opportunities.
I'm beginning to learn a little more about what sacrifice really is and it's hard.
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!