A big box showed up on our porch and inside were these beautiful flowers and vase from Ez's co-worker and his family. I'm grateful for their thoughtfulness as well as so many others during this time.
The acts of service vary from gifts, to a listening ear, to having someone to hug and cry to. My friends have been so sweet. So many of them ask how they can help and I have a hard time answering that question when I don't even know what I need. Without asking they brought us meals, cried with me, took me to lunch, and listened. One friend suggested making shirts for our girls with special needs for our upcoming race. It was such a wonderful idea and I can't wait to run in it!
Lots of other people say they are praying for us. They say they feel bad because that's all they can do. What they don't know is that it really does help and I'm grateful for their thoughtfulness. After the first few days, all of a sudden I snapped out of it and I feel stronger now than before. I have felt the strength from everyone's prayers. It is real.
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.
Grieving is interesting. It comes so unexpected.
We had another meeting for Elise today. I didn't realize this meeting was to determine eligibility for Elise to enter special education in the school system. Of course I have always known this was what would happen and it was no surprise when yes she did qualify. What I didn't expect was how I felt when I signed my name declaring that I had a child in special education.
Like I've said, I know it and am fine but when it came to it in the moment my heart stung a little. This was not what I had ever expected or planned on. Children in special education have to be below the 7th percentile. Elise is in the first percentile and below. She is now on the same level of communication that Cal is on according to tests.
I know I am getting stronger though because that moment of grief came and went fairly fast. Bring on special ed!
Writing is therapeutic so bear with me.
I attended a full day class today to learn how Elise's budget works. Other moms were there who had kids with developmental disabilities.
As I entered the room I felt like an outsider and like I didn't belong. I didn't want to be there; I didn't want to belong. Each of them began sharing experiences of their children, mentioning how poorly they have been treated. They asked questions to one another that had never occurred to me before. I got scared. I wanted to run away and not do this anymore.
As the meeting went on something changed in me. I realized I could actually relate to these women. Each of them has their own quiet burden they carry and I didn't feel alone in that burden there. I carry a different, yet similar burden that helped bond us together. Having a special needs child can be lonely. It was nice to feel validated and understood by them because they have been there and know what it's like.
All the women there had teenagers so I was the rookie sitting back, listening to their experiences. Each one has gone through and is going through some terrific challenges and I found myself admiring them.
These were amazing women who may look ordinary to everyone else, but were really extraordinary.
So many talked with me, sharing advice and things they've learned. One of the women shared what she's learned and with what I've been so overtaken with lately, which is the increased amount of empathy and compassion for others.
I've been blessed with a new set of eyes; eyes of understanding and non-judgment.
Elise has been consuming my thoughts and life again.
It seems like I had a break for a little bit where life was just "normal." It's hit full force again this last week and I'm afraid will continue this way awhile more. More tests, more therapy, more doctor visits and now we are working with her budget which is way more complex than I ever realized. This involves lots of paperwork and classes I have to attend.
I love quotes. They speak what I feel or tell me just what I need. The latter is what I needed today.
"When I take a small pebble and place it directly in front of my eye, it takes on the appearance of a mighty boulder. It is all I can see. It becomes all-consuming-like the problems of a loved one that affect our lives every waking moment. When the things you realistically can do to help are done, leave the matter in the hands of the Lord and worry no more. Do not feel guilty because you cannot do more. Do not waste your energy on useless worry. The Lord will take the pebble that fills your vision and cast it down...it will then be seen in perspective. You will find peace and happiness and will not neglect others that need you" -Elder Richard G. Scott
Elise was diagnosed with Autism Spectrum Disorder today.
I was actually surprised how hard today really was and having the doctor officially tell us. We've "known" for the last 5 months that Elise has autism but today we got the official word that we're in this for the long haul.
I guess I really shouldn't be surprised at how I feel because I'm always surprising myself at these moments that are hard. It's all part of the grieving process, but thankfully these moments are much fewer than they have been. I think the hardest part about today was seeing on paper how behind she really was. Her language and motor skills are that of what a typical 7-11 month old child's would be. Thankfully with more therapy and starting so early, a lot can be done to help her and a lot of progress can be made.
At the beginning I was overwhelmed with it all. I felt like I was on an emotional roller coaster. I never knew when something would set me off; it would catch me completely off guard. I remember being in the grocery store by myself and it hit me again and I started to cry. Sometimes I think I'm strong and I'm doing good, then again it just hits. I do feel stronger now, but I still have my moments.
I was talking with a friend who has a child with autism. I completely understood when she told me, "It's not easy knowing your child isn't going to be normal."
I learned that about Elise at the beginning of February 2013.
I took her in to her 2-year check up. The nurse was asking me if I had any concerns for the doctor before she came in. I told her I was concerned about Elise's development and speech, knowing they weren't where they were supposed to be. I had come to the doctor's office figuring Elise would be a little behind, get some therapy, then she'd be fine.
The nurse then left an autism screening evaluation form for me to fill out. I began filling it out. When I got to the question where it said, "Does your child wander with no apparent purpose?" tears automatically filled my eyes. That one sentence summed up Elise perfectly. It was the first realization I had that Elise could potentially have autism.
I blinked away the tears as the doctor came in. She began asking me questions. Every now and then she'd pause, look over my answers then begin asking me more detailed questions.
Finally I asked her, "Is Elise at risk for autism?" She told me there were quite a few red flags for it and that she wouldn't rule it out. She then went on to tell me what steps needed to take place next and therapy needed to be started as soon as possible.
I held it together until I got to the car and the possibility of her having autism hit me and I couldn't hold back the tears any longer. I drove to Ez's work and he came out with a chocolate bar for me :) and we talked. I think we both knew it then, but at least I was in denial hoping she was just "significantly behind" as the doctor put it.
Sleep was hard that night. I kept waking up, hoping it was all a dream. The tight knot in my stomach told me it wasn't, making it difficult to fall back asleep.
It's weird because all of a sudden everything's changed, yet nothing has. Elise isn't any different than a few days ago, but now I see her differently. As hard as it is knowing that she has autism, it is also a relief. Before I knew, I was getting really frustrated with her. Here she was, almost 2 and she didn't know how to use a spoon, wouldn't touch a pen or crayon, and had stopped talking.
I remember thinking, "How do you not know how to use a spoon?" "It's not that difficult!" yet I would have to put her hand on it, and hold her hand on the spoon and put it in her mouth. If she ever let go of it, she'd just stare at it, like she had no idea what to do. Now that I know, I find myself so much more compassionate and patient with her. I know these virtues will be tested much more in the future, but just knowing helps so much.
It's amazing because it feels like I've completely fallen in love with Elise all over again. I understand her, to some degree, so much more and I'm seeing things in her that I haven't noticed before. Things she does that I was always confused about, now I love and am fascinated with why she does them and wonder what she's thinking.
We've told the kids and they've been amazing with her. Tonight Bryn said before going to bed, "Mom will the baby have what Elise has?" I told her I didn't know and asked why. She said, "I hope not because I really wish she could talk and play with me." Those words pierced my heart.
I hadn't considered much of how this was affecting Bryn and Brock. I guess they've seen and been around enough other 2-year olds that they know what they can do. They probably want their sister to play and do the same things those other kids are doing. Although they may not have the typical relationship with her that most siblings have, I do know that she will be a great blessing in their lives.
My heart is full right now. We have been so blessed with the kindness and thoughtfulness of friends and family and we are very appreciative. It's a very humbling experience to be in. I've never been on this end of something before. I'm just so amazed at the love and concern people have for us. I know they are God's hands in helping lift us up.
I feel so much gratitude! I know our Heavenly Father is there on our right hand and left hand with His angels round about to bear up. I've felt so much strength and I know it's because of the prayers being said on our behalf. It's incredible. I've always heard about people feeling strength or help from prayers during hard times, but never have experienced it before.
It's real though. It's a really neat thing.
A president of the LDS church said,
"God does notice us, and he watches over us. But it is usually through another person that he meets our needs." -President Spencer W. Kimball
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!