Our genetic test results came back from the lab.
Turns out I have an identical genetic variant on the same SYNE1 gene that Elise has. Most likely the geneticists are assuming that because both Elise and I have that genetic variant and that it doesn't affect me-it likely has no affect on Elise. I could potentially be a carrier but they are leaning to it not being the cause of what Elise has. We recently have had some specialist appointments to rule out muscular dystrophy and have a few more appointments in the future to piece together this puzzle of a girl.
So that is the news of the week! We are happy and good. Every possible door that closes (like this last round of genetic information) is actually a step forward because things can get ruled out. An actual diagnosis may or may not change much; however, being able to know and determine or plan for the future may be useful.
At times it has gotten frustrating with how long and extensive this process has been. I have realized how little of patience I actually have.
Either I've been blessed with an incredible tender mercy or maybe I'm finally learning some patience and acceptance of God's hand in all this; probably a little of both. I don't feel the intense anxiety at having to know or like we're going around in circles. I'm not frustrated, disappointed or impatient of the answers we have been given or the lack thereof.
I finally feel content and at peace.
I guess it has been somewhat gradual because until recently have I realized how peaceful I feel about the whole thing. It feels like a huge weight has been removed from me. I know and testify that it is only because of our Savior, Jesus Christ's Atonement that this is possible. He is the true source of peace. In John 14:26 it reads, "Peace I leave with you, my peace I give unto you; not as the world giveth, give I unto you."
I know our Heavenly Father knows what my family and I need to learn; to grow into what we are to become. Sometimes an easy, fast answer isn't what's best.
I will continue to put my full faith and trust in God and in His timing.
This is Elise.
We named our Elise after her. She volunteered at the beginning of the summer to watch our kids twice a week for the whole summer for FREE! She is an amazing, selfless young lady with a super bubbly personality! I just love her :) Our kids have grown to love her as well.
Awhile ago I remember lying in bed, feeling sorry for my Elise. We had named her after this sweet and amazing girl and I felt bad that our Elise wouldn't get the chance to experience as many things as her. I somehow felt cheated.
Just then I had the most amazing experience. The veil felt so thin and I got a glimpse of who our Elise was. It was something I'll never forget. I was taught that night that Elise isn't here to be taught about the world but instead would teach the world.
While I was so insistent on teaching her earthly things, I realized she was here to teach me heavenly things. It's so easy to feel defeated and like I'm not doing enough. I want more than anything to help her and for her to live the best life she can have. I get so focused on teaching her this and that, that at the end of the day I've realized she has taught me something more, something much better.
Elise is definitely a special name.
After the first few days of the initial shock with Elise were over, I experienced a paradigm shift. I decided it was time to move on and forget about all these possible "endings" that have consumed my mind.
I want to focus now on a quote from Elder Wirthlin, "Come what may and love it!"
Pres. Utchdorf said, "Being grateful in times of distress does not mean that we are pleased with our circumstances. It does mean that through the eyes of faith we look beyond our present-day challenges." I don't have to love the circumstance I'm in, but I want to embrace and love this new, unique life we have.
Because of it, I have shared the gospel.
Because of it, my faith is stronger.
Because of it, I completely rely on my Heavenly Father.
Because of it, we are a closer family.
Because of it, I have learned how to love stronger than ever before.
No we may not be able to do a lot of things I had hoped our family could do together or that she could do...
I want to put the rest of my time and energy into what we CAN do as a family and what she CAN do! There is so much more energy when I change that one word. It changes the whole feel of our circumstance.
Come what may and love it!
This is probably one of the happiest and proudest moments I've had with Elise! It's so hard to explain how much these moments mean to me. They are precious. After Elise did the whole process by herself I called my mom because I was so excited.
At the beginning of March, Ez and I had a special fast for Elise. We fasted that she would make improvements and learn quicker.
I can testify that without a doubt that our sincere, heartfelt prayers and fast have been answered.
Looking back it started on March 3rd, the day after we fasted. Since that day I feel like I can report progress after progress she has made. It's amazing. She is starting to form a point, she goes on this slide all the time now, and she is making more vocalizations and all the other things I've posted.
I am humbled and grateful for the Lord's kindness and mercy. I also feel like I can "second" what Elder Richard G. Scott has said about learning from the Spirit. By me being aware and writing on this blog, I am able to see our prayers being answered right in front of my eyes. If I hadn't done that I may have missed seeing God's hand in it.
“Write down in a secure place the important things you learn from the Spirit. You will find that as you write down precious impressions, often more will come. Also, the knowledge you gain will be available throughout your life. Always, day or night, wherever you are, whatever you are doing, seek to recognize and respond to the direction of the Spirit.” -Elder Richard G. Scott
I believe miracles still happen though they may not be as noticeable as those we read about in the scriptures or magazines. I've learned in order to recognize something you have to be looking for it.
The 2nd counselor in our Bishopric bore his testimony yesterday on miracles. It was a sensitive subject for him I could tell but I felt the Spirit bear witness to me that yes miracles do happen and are all around.
After we came home from church the kids watched a church video. When I looked up, Christ was performing different miracles. Both of these instances reminded me of Elder Holland's Oct 2014 conference talk. In it he said, "Believe in miracles."
We had a miracle happen today.
Throughout Elise's therapy session and at dinner tonight she was able to discriminate the different photos shown on the ipad and touch the one picture she wanted. I could see her eyes look at each of the pictures and her hand hit the one picture she wanted then it would speak for her. I didn't have to prompt or do hand-over-hand, she just did it by herself over and over again.
Some may say "so what?!" For me it was a miracle. I can't even begin to think of how long we have worked on this. Kids with autism have a very difficult time understanding that a picture of a horse is the same thing as a toy horse or real horse. For her to understand that a picture of a toy means the actual toy is such a big step. It opens up so many doors for us now.
Granted this is just a beginning of her understanding but it will lead to her being able to tell us so much more on the ipad and touching pictures in books when we ask, "Where's the cat? or Touch the ball."
It was so wonderful because she was actually telling us what she wanted. She was communicating with us and yes I believe that is a miracle!
Today is Elise's last day of gymnastics since she is turning 3 this week. It was a class just for kids under 3 with sensory processing disorders and disabilities. It has been so wonderful for her.
She started beginning of May and couldn't sit still during circle time. A lot of the things were very difficult for her. Bars were especially difficult and she wouldn't even touch them. Now she can walk on the beam very quickly holding my hand, she gets into the ball and foam pit and loves it, and can sit in circle time.
As excited as I am for what awaits Elise when she turns 3, I am also a little sad. It is the end to a few things that I have grown to love and care for. I have made so many friendships with the women in this class. We have a special bond and understand each other on a different level. We have all told our story of why we are there and what is going on with our child. One mom almost died delivering her 26 week old daughter and her daughter still has on-going complications. Another is divorced, recently discovered a brain tumor, and has kids in therapy. The stories go on and on.
Elise has maybe had 4 sessions the whole time where she hasn't had a meltdown. These women cheer her on though. When she's happy and doing what she is supposed to do, they say over and over, "Yay Elise, good job!" I've never once gotten a judgmental stare or comment.
Everyone there only cheers.
It has been a real eye-opening experience to me. This group would have frightened me a year ago; kids that aren't neurotypical ("different") or who struggle developmentally. The unknown of something is always a little intimidating but I've learned deep down that all these kids need is love and a sense of belonging. That basic and fundamental need that all of us need is no different with these kids even though it may not be reciprocated back as we expect. I'm going to miss this place and these people!
A pro for waiting at therapy for Elise is that it forces me to have one-on-one with Brock every day for an hour.
There's no laundry, no cleaning, no bills waiting to be paid, and no other distractions. It's just him and me. Lately we've been playing Dora Candyland which is a little nice twist to the original. He usually beats me though :) He's getting good at Guess Who, we read a lot and play kitchen and trains. We might have to start bringing some other games because I'm not sure how much longer I can play Candyland.
This quote was from this most recent conference and I love it! It caused me to experience a paradigm shift.
The definition of stellar is: indicating the most important performer or role. That one word changes everything. Elise's spirit is one of the most important. She is the "prima ballerina" as the dictionary explains. It is not necessarily her that needs us but us that needs her.
How grateful I am for her and being a gift to our family.
Elise's therapist did some testing today to see her progress. I became more and more disheartened as the questions continued. No she still wasn't following commands, no she still wasn't pointing to pictures; on and on it continued.
By the end of the session I was done.
Luckily Ez was home sick so I could cry to him. I was so disappointed and frustrated that after HOURS and HOURS and HOURS of therapy, those were the answers I gave.
Thankfully Ez knew just what I needed to hear. He told me, "Look at where she would be without it."
Those words pierced my heart. I knew they were true. I knew that even though Elise has made little progress, it is progress nonetheless. I know that this life she has, is and will be slow and a lot of hard work-for both of us. But I know without therapy she nor I wouldn't have the hope it gives us and hope keeps me going.
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.
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!