Grace for Rett » Grace's Life with Rett Syndrome

By Gracie’s Daddy…

Steven didn’t come to bed until 2 am last night. He always stays up too late 🙂 And usually, I find that he’s just been up thinking about Rett Syndrome. I’ve been asking him his true feelings for a while now and only ever get snippets. I know he’s holding back. Last night, while sitting up till 2am, he wrote this, his first post for our blog about Rett Syndrome:

Most of you out there who might read this blog know I have a daughter called Grace Catherine May Halford. She’ll be 2 years old this month.

I have never written anything about her before, or my life with her, I usually leave that for my wife. My wife blogs about her and keeps my family and friends up to date with how she/we’re doing. I’m not convinced any of my family have ever read any of it though, if they have in the past, they probably don’t now.

When my daughter was rushed to the hospital last October 2009 it was sheer panic for my wife and I. We have 3 children, all under 7, and going to the hospital is no fun, especially when you think your daughter is about to die.

It started last year (2009) about October time. My daughter had never learnt to sit up and have never spoken, we put it down to her just being a lazy baby. Grace was born a normal girl, with lots of thick, dark hair. She had an olive complexion like her oldest brother, like my mother and like my wife’s family. She was growing fine, had great eye contact, laughed a lot, never cried much, and fed herself food.
When she was almost 1 years old I went to Nigeria for 2 weeks to teach and preach. It was a great trip, although a little nerve racking. I couldn’t wait to get home to my wife and children. One thing I remember from back then was how much I looked forward to growing with my daughter, to seeing her laugh, and run, and dance. I would look forward to her wedding day where one day I would give her away to a man I knew would be THE one! She was already a Daddy’s girl and I would look at her for what seemed like hours on end. We just stared at each other, often laughing, and making each other laugh. The way I looked at her and she looked at me made me think of the way our Heavenly Father looks at us, with such love and joy. Nothing could break our gaze.

Then I returned from Nigeria. I got home and woke my children up as it was late at night and I kissed them and gave them gifts. Then I went in to see Grace. I didn’t say anything but I knew something was wrong. She wasn’t her usual self, I just put it down to tiredness or maybe my mind was playing tricks on me due to the long flight.

Then the next morning I saw her and immediately knew something was wrong. Her lovely deep gaze was withdrawn, she was shaking a little bit and was even worse at sitting up. She was so floppy I didn’t know how to hold her. When sitting in her high chair she couldn’t put food in her mouth anymore and was looking at her hands as if she was seeing them for the first time. I was so hoping it was just a cold. We watched her get worse over a couple of days then decided to call the doctor. The reason we waited so long was we thought she was just taking her merry time to reach her milestones. I don’t know, maybe we were lying to ourselves, hoping everything would turn out okay.

The doctor saw us that week and immediately referred Grace to the Paediatrician. This would take up to 4 weeks though (gotta love the NHS!). We waited as long as we could, just hoping and praying everything would be alright. We kept this to ourselves as we didn’t want to worry anyone, and I think we were in denial that anything could seriously be wrong with my beautiful daughter.
About one week after the doctor’s appointment, after we had sat there and tried feeding her Cheerios and other foods (to no avail) she started crossing her eyes. And I don’t mean the cute way a baby does, I mean all the way in. It went on for about 3 days, and got worse and worse and lasted longer and longer. Then my wife met with some girls from Church and they prayed, then my wife told them about her eyes. Some of the ladies there felt she needed urgent care. That was all we needed to know to rush Grace to the hospital!
We arrived in the emergency room and we didn’t have to wait. They took her right through and did some basic tests. Whilst in the first waiting room bed there was a boy who had sliced his foot and was getting his flesh sown back together. I must say, a good distraction :)
Then they took her to a bed and kept her there for 2 days. She had test after test. We knew the doctors knew what was wrong with her as they weren’t too worried about her dying. I thought my daughter was going to die, and I saw her life just ebbing away. I was losing my Gracie, and my heart was breaking. Not only was I losing a daughter, but my boys were losing their sister and Elizabeth (my wife) was losing her too.
She had loads of blood tests and a brain electrode test, to see if she was having seizures.
Although it was heartbreaking, we had peace. The Church rallied together and prayed day and night for us, they cooked dinner for me and the boys. They took care of the boys whilst we were at the hospital. They did everything. I have to be honest though. I was sad to see my natural family do nothing. My adopted family were there all the way but I kept looking for rays of hope from my birth family. Unfortunately many people don’t know how to handle tragedy. They just hope it goes away, or hope it doesn’t infringe too close to their territory which has taken a life time to build. Christian’s are vulnerable people. We put ourselves out there, our lives on the line for others. We weep with people, we rejoice with people, we hurt with people. And I had so many people there to hurt with us, as well as knowing Jesus was there going through this with us.

In a few short days it felt like my world was crashing down. The love I have for my daughter is love I have for no one else. I love my wife with a deep, intimate love. I love my sons with a deep, unquenchable love, and I love Grace with a deep you’ll always be my little girl type love (no matter how big you’ll get). I never thought I could be so in love with my children, but I am! :)
The hardest part was to no longer have her gaze into my eyes. It was crushing.

AFter a few days we took her home and tried to carry on life as normal. Everyone asking me how she’s doing, thinking it would all be over soon. We found out she (probably) won’t be dying anytime soon, but still no prognosis. They said we hope to know in about a month. We searched the internet looking for what she may have. Then one day per chance Elizabeth (not my wife), a friend and an elder in our Church said “Ooh, she looks like she might have Retts”. Well, we got home and did our research (actually my wife did). She excitedly called me and said I must look on Youtube and look at Rett Syndrome kids. I did and all the girls on there looked and acted just like Grace. We could barely believe it but we knew this is what she had. It was a relief to know what we were now up against.

We went to the doctors in December 2009 and they couldn’t give us her diagnosis, we had to wait 2 more weeks. We told them we think it’s Retts and the room went silent. Their silence gave it away.
We were all the time hoping that it was nothing more than a bug that affected her brain temporarily. Even up until the day we found out I was optimistic it was nothing too bad, after all, I surely couldn’t have a disabled child, not me!
But that day came, and we heard the news that made my heart sink a mile and my hopes and dreams for my little girl get buried with her little personality. Grace has Rett Syndrome. There is no cure! We will have a severely disabled child for the rest of her life, and no one knows if it will be a short or a reasonably long life. The diagnosis just brought on more questions, but at least we knew what to expect and look for, and pray for in the future.

Since that day we have had our ups and downs. We have shed many tears,and I still do, knowing my little girl is trapped inside this body that won’t cooperate with her mind. My daughter can’t sit up, speak, crawl, walk, feed herself, do anything meaningful with her hands, go to the toilet by herself, and the list goes on. BUT, she can make us laugh, and she herself has so much joy that it’s contagious!
When she first got bad it was said she was at the end her regression stage. This was supposed to have started at about 6 months and finished at about the age of one year. We lost her for a while, but she has come back again, although a somewhat different girl than we first thought she would be.
She sleeps through the night, and laughs when I kiss her. She has a strong affection for me and makes my heart melt every time I think of her. She has a purpose in life. She is loved and all who meet her are loved, unconditionally by her. It is a struggle, but one I happily go through for the love of my life. Our days are filled with medicines, vitamins (she can’t chew food, everything is blended), therapies, keeping her new glasses on, and trying to keep her busy to strengthen her weak body.

I cringe every time I think of any time I ever looked at a disabled child and not smile and love them, or when I judged a parent of that child for not doing more to shut him/her up when they screamed out. My daughter often screams at the highest pitched scream you will ever hear (no exaggeration). It is embarrassing knowing everyone is hating that we are there in this restaurant as all they want is a peaceful lunch, as do we! She looks normal and has a cool looking buggy so people put it down to us not caring.

My wife and I have our struggles. It is hard and frustrating. We wish we had more support from family. Just one night out, or a day away from our children without worrying about them would do the world of good (no, it’s not a pity party, I’m just writing my rare feelings into this blog). But this is the life God has for us, and I gladly wear these chains, that can sometimes be heavy. I fear she will die young, it is on my mind more than it should be, knowing this is a reality……BUT for God!
I have not lost my love for my Creator, but have fallen in love with Him more and more, thanking Him for counting me worthy to be able to take care of such a beautiful girl as Grace. I secretly cry often with my girl, especially when she wakes up in the night screaming in pain due to her heartburn (common with Rett babies). I ask God to heal her, but so far He has not answered the answer I want from Him. I’m not angry at God though, and haven’t even asked Him why. God doesn’t make mistakes, and I thank Him that He chose us!
I put on a brave face in public, but inwardly I’m hurting, knowing that no one knows my pain for my girl.

If you’re reading this please know that Jesus loves you, He loves me, He loves Grace. In the midst of pain He will be there, to those who call on His name. Thanks for reading :)

Steven.

susan blatchford - November 9, 2010 - 12:04 am

Thank you for sharing so deeply. I am honored that you felt inclined to open up. Your story will have a large impact on each of us as we take it to heart in our own way. I would so love to give you both a night out; if only we all lived closer. Still, we can offer you our prayers and be assured that you are not alone!
God Bless you for sharing.

Elli - November 9, 2010 - 12:06 am

You are so right about many people not knowing what to do with tragedy. Especially a tragedy that is unfamiliar – people are much more able to deal with the death of a loved one, or the loss of a job than with the crushing knowledge that our lives have taken a sudden left turn. There are no pat, trite phrases that fit a situation such as yours. What I wish people would do/say more often is, “may I pray with you?”

I have not suffered the loss of dreams that Rett Syndrome brings, but I have been in a situation where our loss completely confused those close to us. I will tell you that what you have done here is probably one of the most therapeutic actions you could take – sharing that burden.

I have been and will continue to be praying for your family. What you and Elizabeth are doing with this blog is really important. You’re raising awareness of Rett Syndrome, and you’re sharing your real, heart-wrenching burden. You, Elizabeth, and Grace ARE making a difference.

Tiffany - November 9, 2010 - 12:14 am

absolutely speechless! What an amazing story, thank you for sharing! Gracie is a lucky little girl have a mom and dad as she does!

Joanne Thomas - November 9, 2010 - 1:25 am

Not many words–just tears and thanks that Jesus has you and Gracie right in the middle of his love and knowing that He cares and will see you through your tough times and is quietly speaking to Gracie in ways we will never know in this life and sorrow that I don’t live closer to take care of the kids so you and Elizabeth could have a “date” night or even a weekend away to enjoy each other and praying for you and along with you that God will miraculously heal Gracie of her heartburn and/or Retts syndrome.

Liz - November 9, 2010 - 1:35 pm

It is amazing how well you and your wife can write and how eloquent you are in sharing your story. You are loved and God’s people are your family. That has been shown to me over and over again. Across the world its amazing to be touched by your story. You two and your family are truly incredible souls. Your wife gives so much in her business and the love she spends on her pictures. I can see that genuine heart coming out in everything you do. We are only here for a short time to spend together and love our babies. They are blessings no matter how hard they can be. You guys are so inspiring to remind me to enjoy every minute of every day and some day we’ll all be united in our kingdom and get a big hug!! Keep writing. It seems like it’s helping right? We all read every day whether we respond or not. Don’t feel alone!

Kelly Butler - November 9, 2010 - 3:09 pm

I am so glad that I came across your post. Thank you for sharing your raw emotions. It is very brave of you. I too am a Rett parent – my Brooklyn is five. She was two when we received her diagnosis(I actually also now have a 1 year old son that has Down Syndrome) I too am also a Christian – who although I do not like to admit it struggles to find peace in the disabilities my children face while at the same time do feel blessed that GOd has blessed me and trusted me with their lives. Our cure for Rett is coming – I have faith in that. There are top researchers WORLD wide working on that for our girls. Keep praying, keep believing, keep fighting for your daughter and most of all love that angel and continue to be her voice.
Hugs from Indiana…..

Laurie Ruckman - November 10, 2010 - 3:05 pm

Steven, you shared your heart and that is hard to do. Your strength is amazing and you hear it through your post, although I am sure you feel quite weak. I can’t even imagine what you and Beth are going through. God truly is the only one that can know how you both feel. Grace is so beautiful and I am so glad she gives your family great joy. It’s neat to know how in love with her you are. You and Beth are an inspiration to so many people in the way you have turned Grace’s life into a ministry for others to learn from. Thanks for being a great Daddy and sharing it with all of us out here who doubt everyday. Love and Blessings~ XXXOOO The Ruckmans

Bettina - November 10, 2010 - 6:29 pm

Hello, Steven. Powerful stuff you have written. What extreme and intense passions and sufferings you all have endured.

I worked many years as a midwife and had the blessing to observe and attend families experiencing profound joys. Alongside that was the honour of being with them as they endured devastating news. I just wanted to say that I have observed that EVERY life, however brief, has Divine purpose. Never underestimate the effect that Gracie’s life has – and will continue to have – upon others (as well as you, Elizabeth and the boys!)

I hope that you share your thoughts again sometime…I have been blessed by reading your words.
Bettina
ps/I’ll never forget the note Elizabeth wrote one day after a lengthy hospital appointment with Gracie: “I’m gonna wear Gracie all day.” It made me think of the verse “the Beloved of the Lord place their head between His shoulders”. I can’t think of a better place to be.

Bettina - November 13, 2010 - 7:08 pm

post script:

The verse I was referring to is

Deuteronomy 33:12 New King James Version (NKJV)

“The beloved of the Lord shall dwell in safety by Him, Who shelters him all the day long; And he shall dwell between His shoulders.”

Jenny - November 17, 2010 - 7:36 pm

Crying – that was beautiful. You are so right, God does not make mistakes. That little girl is loved by people all around the world. You have brought attention to a disorder that most people don’t even know about. And more than that, through photography, writing, and your interactions with people, you have witnessed about the love and power of Jesus Christ. Your family is in my prayers, I pray for the continued strength, healing, and joy in your family. God bless.

Steven Halford - November 19, 2010 - 3:50 pm

I just need to clarify something.
When I wrote this I was injecting my feelings into words. I said some things about my family that weren’t necessarily the way things were, but the way I felt they were. Although some of the things I said about them are true, they truly did and do care, and were on the phone with me asking what’s happening.

I guess we’re not as close as I am with my Church family though, and that bothers me.

In the Church we have a level of openness and honesty that I wish we would find in all of our families. Coming from America we say what we mean and mean what we say, it’s sometimes hard to look through what is not said, and that’s where I struggle. I don’t like games and HATE drama. My life is not like Eastenders or Coronation Street, there is too much to fight for to have to fight with those of my own family or Church family (it’s sad that the two aren’t actually one).

Just to clarify 🙂

Steven.

Beth - November 20, 2010 - 5:33 pm

Thank you for sharing your innermost thoughts. Fellow Christians pray for each other. They bear one another’s burdens without thought that it’s someone they don’t know, but just someone who needs prayer. I’m praying for you and your family. God gave you Grace in so many marvelous ways. Keep praying & don’t let go of God. He’s there for you whenever you call.

F a c e b o o k