The last couple months Elise has struggled significantly getting to sleep. Often it has taken 2-3 hours for her to eventually fall asleep then at times has woken up in the middle of the night, not able to go back to sleep. On a particular difficult night when my husband was gone due to his church calling I put the kids to bed by myself, dreading what lay in store for me that night. I quickly tucked the other 3 kids in, then laid with Elise in her bed, hoping she'd fall asleep quickly.
However the night began like all the previous nights with her. She thrashed her body around, cried, and kicked the door over and over. I tried to sing to her, read her books, and give her squeezes; I tried every possible thing I could think of to comfort and soothe her but she continued to hit herself, scream and kick the door. I realized there was nothing I could do that would help so I just laid there and ached for her. I so wish I could have taken away some of her pain and possible loneliness she may have felt. It was one of those moments I wished from my very core that she could talk. Oh how I wish she could talk! I wish she could tell me what was bothering her, what was making it so difficult for her to settle. As a mom I want to comfort my children when they are unsettled! However I couldn't comfort her as much as I tried. I yearned that she could tell me how I could help her but she couldn't and I wasn't enough. It was then that I cried out to Heavenly Father my pleas and I just held her.
Wanting so desperately to break her silence that holds her thoughts captive, I soon heard a voice, enter my mind. It told me to play primary music for her. I listened and found some primary music to play for her. I then wondered which song in particular would help her. Again I felt prompted to turn on the song, "Follow the Prophet." I wondered how this song could possibly help her fall asleep because it is not a soft, slow song! It is her favorite primary song though so again I listened and turned it on, praying it would help.
I turned it on and within seconds Elise's cries turned into laughter. Her whole demeanor changed instantly. It was like magic. It was incredible to watch the difference change in her. She was smiling. She was happy. I was shocked at her transformation. Everything tense about her melted away and she seemed at peace. I slowly walked towards the door then left her. I listened on the other side of the door. It was quiet. I listened a little longer and still there was no sound from her.
She had fallen asleep. It was a miracle! It truly was.
I love reflecting on this moment. Elise can't talk. She can't tell me what she needs or wants very well. However there is One who knows perfectly what she needs as well as what all of us need and want and that is our Heavenly Father.
The Holy Ghost who is a third member of the Godhead and a personage of spirit. whose role it is to be a comforter, teacher, and revelator was Elise's comforter and my revelator that night. He was able to SPEAK to ME about Elise, telling me exactly what she needed that night. He revealed to me what Elise needed. He in a sense was Elise's translator during that long, difficult night. Through the Holy Ghost I could know how to comfort Elise and how to help her. The Holy Ghost broke her silence for a moment. What a gift.
Elise has not been left alone to carry her burden nor am I alone in knowing how to help her. "...understand that we do not ever walk alone. I promise you that you will one day stand aside and look at your difficult times, and you will realize that He was always there beside you." -Pres. Thomas S. Monson
The nurses know how to make even a blood draw look cute.
Things have been busy around here but here is a quick update on where we're at with Elise. At the end of December we took another trip to Primary Children's Hospital for possibly our last test. It had got bumped up 2 months earlier so we were pleasantly surprised. This was the Exome test that is quite new. Ez, Elise and I all got our blood drawn and will each have 20,000 chromosomes looked at. If Elise has any deletions or duplications then they will compare those with our chromosomes to see if we have the same deletions or duplications. If we don't then they will know most likely what the cause is and could give us more direction.We should find out any day on the results of that test.
Lately we have also been in contact with Katie's Clinic for Rett Syndrome in California. We've spoken to them, sent videos of Elise and sent over all her medical records. We'll be traveling to California sometime in the next few months to have Elise seen by specialists there so they can help us in knowing how to care for her, especially with her communication device. They have already been so helpful to us and I feel like we're on the right track. I'm excited to move forward on this path.
Life is so good :)
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!