A Rett Mothers Story

A Rett Mother’s Story

Lara and Abbey

 

Rett-Syndrome-AbbeyI was young and unmarried when I discovered that I was pregnant.  The father of my baby tried to force me to have an abortion, but I refused.  He even went so far as to offer to pay me.  When I still refused, he toldme that he wanted nothing to do with “it” and that our child would suffer for the rest of our lives if I went ahead with the pregnancy.

My pregnancy was perfect.  I drank no alcohol and I ate well.  The birth itself was rather traumatic, but that is another story.  Abbey was a beautifully behaved baby though a bit slow to meet every milestone.

Just before her first birthday I took her to the doctor because she was ill.  At that point the doctor suggested that Abby might be mentally retarded.  An MRI was done but came back clear.

An appointment was made with a pediatric neurologist, who said that there was shrinkage on the left side of her brain caused by lack of oxygen during the birth process. He diagnosed Abbey with Cerebral Palsy.

There were so many tests.  It seemed as if there were millions of blood tests and urine tests as well as many others.  I was confused and frightened.  After her last vaccination she developed a high fever, but when I called the doctor, she just said I was over-exagerating.  Naturally, I went off to my local GP who provided antibiotics.

From the GP’s rooms, I went over to a nearby Spar shop.  Abbey had been sitting in the trolley eating a chicken nugget when suddenly her eyes rolled back and she simply stopped moving.  I checked for food in her mouth in case she was choking, but there was nothing.  Her breathing stopped and she turned blue all over and became ice cold.

I was absolutely terrified and started screaming for my mother (although she wasn’t there), at the same time I ripped Abby out of the shopping trolley and ran back to the GP’s rooms.  By this time she had started breathing again.  Her pediatrician was called and Abbey was rushed to the emergency rooms at the hospital where she had another massive convulsion even as they worked to bring her temperature down.

A lumber puncture was done to check for meningitus.  My poor child screamed blue murder and they would not let me near her.  Fortunately, she tested clear for meningitus.

As time went on, Abbey began to regress.  She stopped clapping and waving her hands in the normal way; she lost the ability to feed herself; she stopped saying the few words she had learned.  Rett-Syndrome-Abbey3

Then, just before her second birthday the strange repetitive hand movements began and which now prevents her from being able to hold anything and from using her hands effectively.

The Pediatric Neurologist told me it was just a bad habit and I needed to break it.  I was not happy with this so I found another Pediatric Neurologist, Dr Crutchley, but had to wait 3 months for my first appointment.  While I waited still more tests were done on Abbey.  I also took her to a pediatrician who said he suspected Angelman syndrome plus autism.

It was also during this time that my mother happened to go to the hairdresser and during a discussion, another client mentioned that her daughter also had the same hand movements and that the child had been diagnosed as having Rett Syndrome.

As soon as my mother told me, I Googled Rett Syndrome.  I was shattered!  Completely heartbroken.  The symptoms matched my daughters behavior to a T.  I felt as if she was dying.  I cried day in and day out and was constantly being sent home from work.

My wonderful dreams for my daughter vanished and left an empty space.  My little ballet dancer would never dance for her mom.  My precious little girl would never tell her mommy she loves her.  Words I so long to hear, will always be left unsaid.

When I finally saw Dr Crutchley for the first time, I decided not to mention Rett Syndrome.  He examined Abbey for about 2 hours, before sitting me down and telling me he believed she had Rett Syndrome.

You should have seen the look on his face when he told me!  I thought he was going to cry.  I told him that I already knew.  I also mentioned that her eye blinking seemed strange to me, which seemed to worry him even more.

Abbey was sent for another EEG  which came back showing that she had multi-focal epilepsy.  Blood tests were performed to check for Rett Syndrome.  It was three long months before the final result was in and Abbey was confirmed as having Rett Syndrome.

My daughter was now three years old.  She seemed not to know that I even existed.  When I got home from work, she would not even look at me, let alone get excited.  Abbey was in her own world where nothing around her existed.  She would simply sit and stare and laugh to herself.

I sent Abbey to a play group and all of a sudden she changed.  It seems that she needed more stimulation than I was able to give her.  Now she can’t wait to see me and I get wonderful hugs and kisses.  She cries when I leave the room.  Abbey puts up her arms so that I will pick her up and when she is ill, she only wants her mommy.

She has become so aware and different.  Almost as if she has been given permission to see the world around her.  She notices, watches and understands everything now.  Nothing seems to get passed her. She watches the leaves blowing and the birds in the trees. When we go somewhere new she looks around and hops about wanting to explore.

I love her just as she is right now.  I don’t want to change her at all.

We have been through so much together and it has all worked to strengthen me.  I take Rett Syndrome day by day.  I no longer look back to what might have been or ahead to what might still be.  I have settled in my heart that this is who Abbey is and how she will be forever.

Before, I could not go into a park and see other children.  It hurt too much.  Now I can go anywhere with her and feel so proud to have her with me.  I love telling people about her and about Rett Syndrome.
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Abbey’s problems and Rett Syndrome have woken me up big time and with the strength of God, I now have the courage and strength to deal with it.

Sadly, her father still throws that fact that I could have avoided this, if only I had aborted her when he wanted me to.

This was my choice!  I would not change anything if I had to do it again.  I am so glad I had Abbey.  She is my everything!

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{ 7 comments… read them below or add one }

kathleen wagner September 14, 2012 at 10:27 am

SUCH A BEAUTIFUL STORY FILLED WITH SO MUCH LOVE. MY RETT DAUGHTER, NINA, IS 39 AND NOW LIVES IN A SMALL GROUP HOME AND IS VERY HAPPY. I SO APPRECIATE HER PRESENCE IN MY LIFE. TO LOOK INTO HER EYES I SEE PURE UNCONDITIONAL LOVE. SHE IS MY ANGEL AND I WOULD NOT CHANGE HER FOR ANYTHING….SHE IS A PRECIOUS GIFT TO ME! LOVE, KATHLEEN

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Sandy September 21, 2012 at 8:59 pm

Hi Kathleen, Thank you so much for your comment. We have relayed message to Lara and Abbey. If you would care to send us your daughter’s story as well, we would be delighted to include it on the website, particularly as so many young mothers are being told that their precious daughters are unlikely to reach their teens. It would give them so much more to hope for

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Laurie Redelf October 9, 2012 at 11:50 pm

Hello Kathleen! I am a pediatric Occupational Therapist and was just at an “IEP” meeting today -discussing a middle school child with Rett Syndrome. Just like you, the mother is a loving strong advocate for her teenage daughter. I read your story andI want to let you know that you are to be commended on how you have turned your situation into a positive one. The fact that you are so proud of your daughter (as you should be) and love taking her to the park to interact with other children. Please keep your faith and continue to have Abbey participate in all that life has to offer. You are a role model for anyone with a child who has a disability. Laurie

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angela truelsen October 31, 2012 at 5:45 pm

Every time I read a story like this it brings such deep emotion followed by tears no matter how hard I try not to cry.It must be the same for every Rett parent for we all ride this Rett Train.We have all felt the same roller coaster of high & lows.I am moved by your strength & determination for yourself & your Angel.I want you to know that you’re on the right road.Our dreams for our Angels have superceded our wildest hopes for God is working great miracles through them!Like you & I,many parents have been told their child won’t live a long healthy life.This isn’t true.I have Rett friends whose daughters are in their 30’s & 40’s.An Angel in Canada lived to be 60!Let your dreams flourish dear Lara & Abbey.Love life & enjoy all the blessings our Lord has poured upon you!With love,Angela & Angel Desir’e-18yrs old & doing GREAT!

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Duncan Millar February 16, 2013 at 12:10 pm

Hi Lara, I read this and I loved it. A very wise man pointed me in the direction of a youtube video the other day, and the moral of it was “The only disability in life, is a bad attitude.” I think people like you and Abbey highlight this. Be positive and be proud.

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Marcello March 16, 2013 at 3:53 pm

Hello Lara and Abbey.
I just read the story you have been going through. We also have got an RETT-Angel and we really know what you mean, when you write, that you´re so proud to have your daughter by your side.
I´m sad to hear about Abbey´s father – but: So you, dear Lara, can enjoy all Abbey´s love for yourself… He will never be able to learn about those little things in life, which are soooo beautiful – shown to us by our RETT-Angels.

All the best to you both.

Sent from the very far, far Germany

MARCELLO

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Mary Landon January 7, 2014 at 1:42 am

Thank you for sharing your story. My child has Rett. I adore her and am so thankful to have her to love. I was very angry at God at first and resentful of all that my child would not achieve. But, finally I have accepted this Rett monster within her, and I spend every day making her happy, taking her out to fun places, and giving her a very fulfilled life. She is six now and has had more regression, but I keep up my strength and, like you, I try to endure this difficult journey the best that I can.
Abby is beautiful and is lucky to have you as her mother.
Sent from Florida, USA

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