Grace for Rett » Grace's Life with Rett Syndrome

Beyond the Doctors – Can Grace be Healed?

{If you’re going to read this post, especially comment on it, please don’t skim or read between the lines. I have very carefully poured over each and every word}


Lots of people have been very encouraging and sharing their feelings that they believe Grace can and will be healed of Rett’s. In the natural, this is what we know: Rett’s Syndrome is incurable.

We know very well the healing power of God. We have seen the deaf hear, the crippled walk and I myself was healed completely of asthma in the middle of an attack in the middle of the woods at the age of 3. I can distinctly remember my parents (newly Christian) on their knees in the pitch black praying a very simple prayer and my lungs relaxed and I fell asleep. I never had another attack and I had asthma so bad I was constantly in the hospital.

That said, we believe that faith is a gift as it says in the Bible and before we are believing God for a healing, we are believing Him for the gift of faith that she can be healed. I have come to realise that so much of Christianity as I have known it up until this point is mere superstition: “name it and claim it” and “fake it till you make it” won’t heal my daughter. Until such a time as God decides to either heal her or give us faith and a vision of her healed, we are preparing ourselves to live our lives with Grace, our beautiful daughter who we have come to find is disabled.

I know people mean well, but when they claim that God is going to ‘use this’ or ‘save people through her’ is to say that she is nothing more than a vessel to be used and God does not ‘use’ us. She is a person, a human being. When people say that, are they not saying that there is something wrong with her? When I look at her, even in all her inabilities, I see a complete, whole girl, not a damaged one to be fixed. I am preaching to myself, here. It is only through our new experience with Grace that we have come to see our own inability to ‘handle’ disability and even our own feelings that they are damaged people. If God is using Grace or working through her, it is only to teach us to be better people, more able to love that which He created, whether they are ‘normal’ or not.

As a child growing up in the church in America, I knew a man named Kenny. Kenny went blind in adulthood and – poor guy – people were constantly giving him predictions that he would be healed in 3 days or 6 days or on the 26th of March. It never happened.

We held off telling everyone about Grace until we knew there was truly something amis that would be a long term condition for her. We weren’t yet ready to begin being on the receiving end of those careless predictions which seem merely to be a outlet for the zealous to practice their ability to hear the voice of God. If I believe that God said that someone would be healed in 6 days, I would say, ‘thank you, God, that’s great!’ but  I probably wouldn’t tell the person. If I did, I would be saying that I think my ability to hear God’s voice is so infallable that I cannot be wrong and if that person wasn’t healed, then it must be a problem with them, not me. Which brings me to an interesting thought. As Christians, many of us know the power of God to raise people from the dead. It happens in Africa every day. Jesus raised Lazarus from the dead. How much faith to you think a dead man has? None. He is dead. If God is going to raise him, it depends not on the man’s faith, but on God’s plan.

Why is disability a problem for society? Why do they view it as a problem to be fixed? I’d venture to say that it has something to do with the amount of usefulness a person exhibits. In America, the death penalty is in full swing. Why? Because people on death row cost money to keep alive and the courts have deemed that those people’s lives no longer have value to anyone. Hitler believed the same thing.

I look forward to our lives with Grace, no matter the challenges and only ask that everyone support us and pray whatever God is praying. Pray with him. Ask Him his will, His plan and pray for that. It isn’t always necessary to tell the person what you believe God said, just pray it through. Believe it or not, it is not always His plan that someone be freed from disability. Why? I don’t know. Perhaps as humans, we place too much emphasis on ‘wholeness’. Not that our health doesn’t matter to God, but perhaps being disabled isn’t a problem for Him, only for us.

Grace isn’t in pain. She isn’t going to die. She’s going to be loved and cared for her whole life. What kind of quality of life will she have? Whatever quality of life we give her.

Grace makes us laugh. Grace makes us smile. Grace makes us cry. No matter what happens in my life or in our family, we will always have someone there to remind us what really matters, who will keep us connected to the parts of our heart which might otherwise grow cold. Grace is a miracle.

Big Daddy B - January 7, 2010 - 1:22 am

I am a witness to Elizabeth’s healing. We were camping in New Mexico way up in the Sandia mountains. There were no hospitals near by, no electricity to plug in her nebulizer, no doctors, nothing. She had an asthma attack and all we had was our faith. We cried out to God and he heard us. She stopped wheezing right then and never had another asthma attack. I would not believe it if I hadn’t seen it myself.

I believe God heard our prayers because our faith was real, we had no where else to turn. Often times we pray, but we have our own back-up plan. Pray for your headache and then give you two aspirin. It’s when we get to that place where our faith is all we have that our prayers are heard.

Steven Halford - January 7, 2010 - 10:49 am

Hi honey. This post was perfect, and beautiful. Thank you for putting into words what is in both of our hearts. I love you and our precious family 🙂

Stevie.

Laurie Ruckman - January 9, 2010 - 4:01 am

This website allowing us to see the journey of Grace and your family is so amazing. So many people spend their days complaining and upset about things that God has given them only to want something different. You are truly giving the World a glimpse of what God wants us all to be like. You are willing to love the human soul and physicial body exactly where it is at the present; allowing the future to uncover whatever God’s Will is and in His Timing ~ I don’t believe for a second that it is not the most difficult thing you have ever had to do. We thank you for sharing your inspiration, hope and wisdom above and beyond the normal comprehension in how to handle the trials of life on Earth! With much love and prayers, Randy and Laurie Ruckman

elizabethhalford - January 9, 2010 - 9:50 am

oh my goodness Laurie thank you so much. What beautiful words. I just really want to love her exactly as she is and I feel pressure from everyone to believe for something different when God hasn’t showed that to me. If ‘healing’ is what He has for her (and I have trouble even using the word healing because it denotes that she’s ill, which she isn’t) then that’s what I believe for. And if what He has for her is to be pampered, cared for and loved (and to give massive amounts of love) for the rest of her life, then that’s what I want too.

Karen Borg - January 25, 2010 - 10:34 am

Dearest Elizabeth,
Our daughter Theresa is 12now. Theresa also has Rett Syndrome. We are also Roman Catholic and live in Malta (an island in the Mediterranean in case you did not know where it was) we got Theresa’s disgnosis of Rett in 2002 just before she turned 5. She was thought to be autistic first. I loved your post. Theresa is Theresa first and foremost. We even forget that she has a disability. Theresa can walk but she cannot talk. The only communicates her need changing the video/dvd or eating by pressing an Able Net Switch. otherwise she does not seem to want anything other than our love and our company. I still pray to God for a miracle but not only, I prefer to ask God to help Theresa communicate better, for me to understand her more. One thing we have learnt is that she love is unconditional. we have to learn from this too. Enjoy your daughter and live life in the best was possible depending on our situation. Take care. Karen

Mary van der Merwe - February 10, 2010 - 9:26 pm

Hi,
Your photos are lovely and Grace is a beautiful girl.
My name is Mary and my daughter Esme has congenital Retts.Esme is now 3 years old and is severley effected by Retts; she cannot roll, crawl,hold objects or speak. She is an incrediably happy child and brings our family a lot of joy.
I read your post re what your ‘speacialist’ said to you re Rett children not having awareness of the world around them or being able to understand sentances. I totally disagree I have been in the medical profession myself for 20 years so speak as a mum and a professional and I know Esme understands a great deal of what is being said and she has the ability to not only be aware of the world around her but how she can influence it as well.
Andreas Rett {Dr who first identified Rett syndrome} quoted ”they feel all the love given to them.They have a great capacity for love of this I am sure. There are many mysteries to this disease and one of them is in the girls eyes. I tell all the parents to look at their eyes; the eyes are talking to them. I am sure the girls understand everything but they simply cannot do anything with the information”.
I don’t know the reasons why Esme is the way she is or why she is here{but then I don’t know that about my 3 ‘ablebodied’ children either!} I am not expecting/chasing miricales for Esme; I feel that the best I can do for her is to love and support her for who she is,take her to therapies {Physio’,OT etc} which help her in small ways to have a greater quality of life and to prevent complications from occuring.
If a meaning of a life can be measured on the positive impact that particular life has on other people ;then Esme has achieved more already than I have ever done and I imagine Grace is the same.
I wish all of your familly well and will keep logging on to see the beautiful photos .

Regards

Mary

Beckee VanWagner - March 21, 2010 - 7:33 pm

Elizabeth,

I was looking at your gorgeous little girl and some of the other amazing photos that you’ve taken and I ended up here on your blog. I skimmed your pages and somehow ended up being glued to your posting on Dec 19, 2009. I am deeply touched.

Your words are TRUE and RIGHT! What a gift God has given you…to see like Jesus sees…a perfect, whole little girl.

It must be how He sees us when He looks at us…as whole…because He sees the WHOLE picture!

God help us to see others in this way…help us see them as HE sees them…

I’m inspired. Thank you.

Many Blessings to you and your family on this journey!
Beckee

melissa - March 22, 2010 - 9:33 am

I’m going through a study entitled The Truth Project (www.thetruthproject.org). Dr. Tackett draws our attention to the Genesis account where God says, “It is not good” (Genesis 2:18). What is not good? For man to be alone. He (Dr. Tacket assisting us in understanding the authorship of God’s master design here…) didn’t make a three-legged dog and then say ‘Oops’. No, God openly declares that alone-ness is not good.

I say this only to validate the perfect-ness of God. [AS IF….anyone ever needs to do such a thing…forgive me.] Validate? Affirm? Lift up? Exalt? Proclaim? Whatever.

My mom has stage 5 kidney failure. FAR different from RS, but still a part of God’s master plan. Not a three-legged dog. Not a mistake. Just a part of it.

Solid post. Rich. Pure. True. Honest. Good.

Thank you for sharing your journey with us.
~MC

Mila - April 20, 2011 - 6:21 pm

Elizabeth,
Very true and strong words. It is exactly what Christians and others need to hear. Grace is exactly what has been needed for you and your family, and also all of us that stumble upon your Blog. I truly hope that she does get better and better. Looking at her and studying her little face, she herself gives me hope. There seems to be an indication of it in her mannerism, to me.
But you are right only God knows everything, and we better hang on to Him for everything. I have a feeling that Gracie surely does! She would not touch so many people profoundly, if she didn’t. God works in mysterious ways, we say – this surely is one of them.

F a c e b o o k