This morning, while I was in the living room and Emma was asleep in her crib in our bedroom, I heard a faint “Mommy” followed by a very distinct “Mommy!”. She was calling me to come and get her out of her bed. When I walked in to greet her, I asked her if she called for me and she smiled and nodded her head yes!
This interaction did my heart so much good!
She has repeated my name when I say it first, but this is the first time she has associated a name with a person (that wasn’t even in the room!), and it just so happened to be MY name! THEN when I asked if she had actually called my name, she replied!
HOLY COW!
Emma has a neurology appointment tomorrow at 9am. They are going to do an EEG to see if she come off of her last seizure medicine, Phenobarbital. At her last visit, her EEG looked wonderful so the neurologist decided to take her off Keppra because she was having issues with banging her head and biting herself (which are common side effects of Keppra)
We believe that when she comes off of the Phenobarb, she will be even more clear and vocal. Phenobarb is a barbiturate and has many side effects, but the major ones are drowsiness and not being “clear headed”.
She has come so very far since March 31st.. I sit and watch her sometimes and think that we could have very easily lost her that day. But the Lord had other plans, and although they are not what we would have wanted or desired, they are still part of his plan for our little girls life and we trust in that, as hard as it is.
We trust in Him.
So…
This morning I am choosing to be joyful despite the pain.
This morning I am choosing to be grateful despite the heartache.
This morning I am choosing to look at the blessings instead of the anger.
This morning I am choosing to look past what was lost and really be amazed at what remains.
This morning, before I begin my daily schedule of meds and feeds, before I begin guiding her wherever she wants to go, being her eyes when she cant see….I will choose to look at the beautiful person that she is.
Not “was”.
Not “could be”
But simply is.
And I stand in Awe….
“Thank you Lord for the glimpses of progress that you give me each day. Things that seem like ordinary task to most parents are HUGE leaps of progress in our little world. Help me not to lose focus on the small steps of progress, and really really cherish them when they happen….”
“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me.” -Jeremiah 29:11-13
Oh Heather, I have tears pooling down my chin and neck. What a blessing. And how you spoke to my heart at the end with your “choosings.”
Love you, my sister.
LauraLee
Heather,
Holy Cow!!! lol Because of you I am looking at this day with a renewed thankfulness for all of my blessings. Thank you for serving as an example and thank you for sharing the verse from Jeremiah. We all need to hold strong to God’s promises….especially when it seems like there is so much to be angry about. You are awesome. Go Emma!!!
Kim
I’m crying too. So beautiful. Praying for many more moments like this!
Way to go, Emma!!!
Heather, thank you so much for this post. It is such a blessing to me to see the Lord glorified in the midst of your trials and suffering. God is so good! Lord bless you and your precious family.
Praise the Lord! As my grandfather would have said. Praying for a great neurology appt.
Praise God!! And thank you for sharing this. This was such an encouraging post for me personally. Not because I’m in the same situation, but the perspective and attitude really apply to something I’m going through with my 15 year old son. Thanks again and God bless!!
Oh my sweet friend – praying for you and your precious Emma, and looking at my day in an entirely new perspective.
love ya!
I am overcome with JOY! Praying the Neuro appt. goes well!
How wonderful! Heather, I was thrilled to see your link among the Tuesday links this morning. I’m so glad you joined in. What a gift YOU are!
Oh sweet dear little Emma . . . you are such a blessing to us all. Thank you, Heather, for sharing Emma and your story with us.
Praise the Lord! Rejoicing with you, sister.
When a child gets cancer or a serious illness, even if they survive, so many times there are deficits, the illness itself and the life-saving treatments can exact a large toll.
So there’s this huge mourning process, even when the child survives, and its ongoing, one of the most difficult things is not to look at what could have been.
Because it is, what they are. A good friend in San Diego has 4-year old identical twin boys, one of them was diagnosed with a malignant brain tumor in June. The surgery has left the boy still unable to walk, talk, or even hold his head up. He should recover, but nobody can say when, posterior fossa syndrome can last a month to 2 years or longer.
The fact that he’s an identical twin haunts me. The “what could have been” is there all the time, staring you in the face, side by side with “what is”.
I’m praying hard for that mother, and for you.
And Emma, well, she’s purely amazing. Love to all.
How beautiful! What a blessing for Emma to call you by name and interact with you. I’ll pray for a good appointment.
Hi Heather. I am visiting your blog for the first time today and truly enoyed your post. How marvelous that your Emma associated the name with you. That is a precious, precious moment. I will be praying also that the appointment goes well.
The precious word, Mommy! I so so often take for granted. Thank you for reminding me of how blessed I am to hear the word, Mommy.
Praying for a successful appointment.
Beautiful baby steps for Emma and I am praying for many more to come. Thank God she is here with you and loved by so many. Love you Heather.
Love and Hugs, Laurie
Praise God! Praise God! Praise God!
Beautiful, beautiful, beautiful! Thank you for the update.
absolutely amazing news. I can only imagine how healing that moment was when you heard those words. the verse you closed your post with is the one we have hanging over our daughters bed. hope is what sustains us each day. it’s what will sustain you and your beautiful Emma. thank you for sharing her with us.
Everyone who has ever read your blog will certainly agree that little Emma has come a long way, and we are all so happy because of it.
Tonight in Bible Study our Pastor talked about how BIG our God is. He talked about Isaiah 40:12 – how that God can hold all the oceans in the hollow of His hand and can measure the heavens with his fingers. Nothing is too hard for Him.
I’m soooo glad about Emma’s improvement. I especially like that she called for her mommy. As a mother myself, that really makes me feel good. Thank you for telling us about that.
I am so happy for you and Emma!
ABSOLUTELY TREMENDOUS!!!!!!!
Thanking God with you for the Huge “little” steps, and the simple joy of hearing mommy!
Though I don’t comment often, I’ve been following your story for quite a while; I heard about you from a friend who lives in your area. I heard a song today by Mandisa “He Is With You” that was amazing. Besides many others I know who are facing difficult struggles, as well as my own, I also thought of you. You may have heard this before, but it’s a beautiful reminder that God is always with you.
If I may, here’s the link: http://www.youtube.com/watch?v=cyy7K0e__x4
Blessings to you and your family today.
Hallelujah! Alright! Givee her a big pound for me and mom- Love to you Georges
Praying for you today, dear friend.
heather-did any of your doctors ever teach you how to fight cancer with food? no chemo, rad, or other drugs are needed. please consider contacting me. i teach my patients how to prevent/reverse cancer and other chronic diseases and think i can be of benefit to you and your family. 775 223 8260 dr.gbh
I just wanted to let you know I daily pray for you and your daughter. Your posts give me hope to keep believing for our miracle. My daughter will be having surgery on September 15. Please pray for us. Your welcome to share with any prayer intercessors you know. Thank you. May God continue to bless you and Emma with good health.