I think that the hardest thing I have had to come to terms with is that Emma is partially blind. Being autistic, that was her main means of exploring the world around her, and now it is damaged, impaired, lost. She use to love to sit and look at books, that was her biggest joy in life. I often wonder if she even realizes that she sees differently and I wonder how she sees, which is a very hard thing for me not to know. When she first came out of the medically induced coma, there was no light in her beautiful blue eyes, there was just blank stare that honestly scared me to death. The light has come back in some ways, it is just different. I remember the distinct difference in her eyes when she was seizing in my arms. It was a soul piercing stare, and I was totally helpless. A mother is suppose to be able to comfort, and there was no comforting her in those scary days.
Now that she is home, I see glimpses of the old Emma. She is a more “content” Emma, but the “old” Emma sometimes peeks through. She is not talking much, which is totally different. Mark, I and Marks mother were talking last night while Em was laying on the living room floor with her blocks, and I just started to cry. I remember her playing with those same blocks before the seizure, stacking them and naming the colors. I miss the old Emma. I miss her laugh and vivaciousness. I even miss her non compliant attitude.
I just plain miss her.
Every day she is coming back, and her brain hasn’t completely healed. There is a possibility that her vision will come back, I have to keep remembering that, but when I see her struggling to do the things that where so easy for her to do before, It just breaks my heart.
It is going to take me a long time to get use to our “new normal”, and I honestly have questioned if I have the strength to face this yet again….
But then I see those beautiful blue eyes, and all is well in our little “non normal” world again…
A Blind Child Speaks
I may not see the way you do
With eyes so bright and quick
But I know where flowers abound
And where the grass grows thick
I know if you are kinda little
And I know if you are tall
O I can see so many things
YOU may not see at all
I use my ears and hands for eyes
And make them see for me
I listen hard and gently touch
And thus it is I see
God must have a reason
For making me like this
Perhaps He meant for me to see
What other people miss!
Oh, friend. You ARE strong. But it’s Christ in Heather that is strong….never Heather alone. I am praying continually for continued improvement for your baby girl. We love you. We love Emma. And we are praying for your whole family!!
PS Whatever happened with “America’s Got Talent?” Can you say?
I am continuing to keep you all in my prayers. Tears can be so healing as times and we know Christ is the Great Healer. Thanks for sharing your heart
My heart breaks for you. I will keep praying for you and your Emma. May God hold you close to His heart.
But she is home with you and while it is so difficult there will be blessings. Praying for her continued healing!!
Beautiful poem. You are in my thoughts.
Fortunately, God doesn’t expect you to be strong in this.
“The everlasting God, the Lord, the Creator of the ends of the earth, neither faints nor is weary. There is no searching of His understanding. He gives power to the weak, and to those who have no might He increases strength.” Isaiah 40:28-29
He will be all that you need. He will strengthen. He will give you His power.
Praying all these things for you and your dear family, Heather. Praying that you get to see the Emma you so miss again. I love the photo of her, she’s so beautiful. The poem is very sweet, too.
This touched my heart so much. I’m praying for Emma’s eyes to be completely healed. You area great mom, Heather.
Thank you for sharing your story of Emma. She is a beautiful girl. And I know that God is going to bring back that light into her eyes. You are an awesome Mom. I am learning a lot from your story. I have a story of my own with my Marah. I invite you to visit my blog and read my story.
Heather & Mark,
You all have been in our thoughts and prayers ever since Emma was an infant at All Children’s waiting (that long wait) for a new heart. We’ve prayed for you through the many trials you’ve faced with your family and especially this past few months and have shared Emma’s story with our church here in TN. When I heard about Emma’s blindness it touched my soul and I cried for you. Then I thought of my grandmother that was totally blind for 50 years who was one of the most amazing women I’ve ever met. I pray that Emma will regain her sight, that God will give you the strength and wisdom that you so desperately need, and that you’re able to see what an amazing child(ren) you have.
Heart hugs!
Heather – my world has been turned upside down over the past month and I’ve had days that I barely have the strength to take another step. I wanted to let you know that I was so comforted when I read what you wrote a couple postings ago . . . you had a nagging hope in the back of your heart . . . “Be still and know that I am God. Watch what I am about to do”.
As hard is this life came be some days I know . . . He is up to something good and I can’t wait to see what He is about to do.
She is beautiful. And I know you are leaning on the arms of your Heavenly Father. I am praying for Emma and you!
Oh Lord, please give them Your strength for each hour!
I choked up as I read this post. I cannot imagine not being able to comfort my baby. I cannot imagine my child seizing in my arms. I cannot imagine. But, what I can imagine, is our loving Savior hold you and Emma in His arms and whispering in your ear, “Do not fear child for I am with you.”
I have no words to say and I cannot even imagine…but my God does and I am praying for you Emma and your family.
Praying for your family!
continuing to pray! don’t lose hope!
It has been a while since I have been here, so sorry about Emma . I will be thinking of your family.
Will keep on praying for Emma,
Still praying – won’t stop!
Jesus is still listening and holding you through all this – He won’t stop either!