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.
Ez and I had a scare with Elise a couple weeks ago while we were taking pictures with my family. The location of where we were getting our pictures done was up high on some rocks by the Snake River in Idaho Falls.
One of us is always in charge of watching Elise very closely. Ez gave me the hand-off and I soon got distracted. Not too long after Ez asked me where Elise was.
"Where is Elise?" is a phrase I hear more often than I wish. It panics me so much because I know of all the possible dangers that can happen to her very quickly: wandering off and drowning are my 2 biggest fears.
Both Ez and I know we have to act and act immediately. There is no wasting time.
As soon as Ez asked me that question we both turned around and scanned the area as fast as we could. Ez spotted her running away from us to the edge of the rocks. My heart almost stopped as I watched Ez sprint over to her.
He caught her just as she was throwing her sippy cup into the river.
She could have easily lost her balance and fallen off the rocks into the river without anyone even noticing.
I watched the sippy cup float down the river, feeling immensely relieved and grateful it wasn't her.
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.
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.
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.
Starting next week all her behavioral therapy will be home-based! I am super excited to have one less place to drive to. It was a tender mercy how it came about and I know it's what she needs most and what we need.
One day I had a sudden impression that she cannot handle being "out" at another place and needed to be home. I quickly acted on the prompting and later received a phone call from the supervisor. She told me Elise would be getting therapy Friday mornings now instead of Wednesday afternoons. This surprised me because Fridays have been my preferred day but they have been full so I haven't been able to do that day. I was humbled to have it all fall into place so perfectly and know,
"God is in the details of our lives." -Pres. Thomas S. Monson
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
This room is why I feel our new home is such a tender mercy for us! There is no way we could have done this in our other home. It is a blessing for sure.
Elise and her therapist are able to hang out in here during therapy. The rest of the time it's her little piece of heaven. She loves it. The other kids love it as well. It's one of the only places where all of them can play together. I don't want Elise excluded from things so what greater thing than to bring it INTO our home and create the environment for her and so others are drawn to her. It's been great and I couldn't be happier.
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!
Elise rode on the school bus for the first time today. As you can tell she wasn't at all thrilled about it. In fact she seemed terrified.
I felt like the worst mom ever.
Here I was putting my 3 year old (who doesn't understand much) on the bus, buckling her, and telling her she is going to preschool and waving bye to her. During that whole time she kept looking at me like what is going on, what is this place, who are these people, and where am I going.
Yep I felt awful and cried after. I kept thinking, who does that to their child? I felt so sad for her. I hate that I had to be in that position. I hate that I can't just keep her home with me like any other 3 year old. I hate it. It's hard leaving her with so many different therapists yet I know all of it is to help her. As much as I wish desperately that I could do it all myself, give her all the time and energy the therapists do, I know I can't and that's what I hate sometimes.
I know that God knows me and my tender feelings as a mom because Elise's teacher called me a little bit after Elise arrived to tell me Elise was safe and was doing great. That's all I needed to hear. It was like the Spirit was telling me that I wasn't such a terrible mom after all, that Elise did and would live through this experience and that it was all going to be all right.
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!