The Loss

Sometimes the reality is so hard, my beautiful baby girl has this nasty, debilitating, life sucking syndrome and people outside the circle just don't "get" it! For the first time in a long time I cried about it, and the unfairness of it all. As I was downstairs tonight I just looked at a photo of Grace when she was just about 10 months old, she is staring at the camera and is smiling for me, she knows what to do when I tell her smile. Amelie is 26 months old and can't do this simple command. She smiles when Retts allows her, she say's the odd word when Retts allows, she eats her food without getting sick after when Retts allows her, and if Retts allows her she MAY live until she is 40? Who knows? Can you even imagine what it is like to look at your other kids baby pictures, something that used to bring you so much joy, and cry in pain? Pain caused by the knowledge that you will NEVER see your little girl smile in that way, that she will NEVER have the same opportunities as her sisters, that her life will be filled with some amount of physical and almost certainly a lot of emotional pain? Can you imagine hearing your 6 year old saying that when her mummy and daddy dies that she will be the one looking after her sister and smiling about it? We are again grieving for another lost future, after we lost our son we never once imagined that kind of pain would visit our home again, and surely to God 24 months later like some sick joke July brought his usual gift of gut wrenching pain. People constantly tell us that they will support us, but the only people doing that are doing so are our families, a few close friends (very few) and our internet family, the Rett family, those parents who know our pain, who know the fight and the pure love these girls have in them. People don't seem to get that Amelie, for a want of a different word (any word,) is a child with a limit on her life, we live everyday in the knowledge that she could die suddenly and maybe some think this is dramatic but hey you know what? We have spoken to and grieved with parents whose girls (and boys) were doing great and who all of a sudden just got sick and died. We live with the knowledge that there is a cure close to hand but also in the knowledge that is maybe too late in coming for many of our girls. I also have come to the realisation that Amelie is just too precious to share with people who can't/won't take her special needs into consideration. When I, her mother, make certain requests to maintain her health and I find they are being ignored, I am now going to take that as a sign that people can't be bothered to support or care about her and will be cut from our lives, it is a privilege to know her and to be in her presence and from now on only those worthy of her can interact with her. I am sick to my back teeth of people making me second guess myself and whether I am handling this "stuff" properly. I know I am usually so much more upbeat but hey when people make you question yourself the mask begins to slip. Today my mask is off and I am grieving tonight, I am sure that tomorrow will be a new day and again I will put my mask back on but for tonight I am a mother who is utterly heartbroken.

New Year New Amelie?

It's with apprehension that I write this but as of New years Eve Amelie's reflux has gone! We have been trying her on different foods, drink and her new special milk, and since Monday it has all stayed down??? Now I don't want to jinx it but we are so happy and Amelie is like a different child. She is so happy this week, she seems more contented and more relaxed cooing and gabbling away to herself but also holding eye contact and looking into our eyes. Long may this last, please God. She had her first appointment this week with her Neurologist Prof.K, and all in all it was a positive appointment. She kept asking it we were sure that Kiki had RS, and we told her yes as her genetic test even came back with her mutation, she also was taken aback when she heard that Amelie followed simple instructions like "Go get your ball". She asked us were we really sure that she was REALLY going for the ball, and as we explained to her that the object would have to be VERY familiar to her but yes she could go and play with that item. She also said that she was very impressed with her walking skills, she said that in her career (She is in her 60s) that she has seen about 40 girls with RS and in her honest opinion she had never seen a girl learn (having never previously walked) to walk so well at such a young age (young for a rett girl). She thought she was great on her feet and believed that her walking could be a sign of a good prognosis. SOOO happy with that :) Finally some good news.


So seeing as this is the first post of 2013, I want to lay out some plans we have for the year ahead and if anybody thinks they can help in anyway just leave a comment.

So here goes;
We still have Amelie's My Charity page still open and would like anyone who wishes to donate to Rett Syndrome Ireland in her name please do so on this link: http://www.mycharity.ie/event/curekiki

Also this year will see the establishment of The Cure Kiki Trust fund, the money we raise will go towards a Tobi Eyegazer for Amelie and so alternative therapies to keep her supple and healthy. Also we will be donating money to Rett Syndrome Ireland who will split it up and send some to RSRT UK for research.

We are currently in the early planning stages of an Over 30s/non-professional mixed teams Gaelic Football tournament. We are aiming to host it Sunday September 9th 2013 as it will be Amelie's 3rd birthday and we thought it would be very fitting. We will be looking for non-playing men and woman over 30 from the Cootehill area to participate and we will be looking for team to take part. We will be inviting teams from the Cavan, Monaghan and Fermanagh area to join us in raising some much need money and also some much needed awareness. It will be a great competition and great days fun after a Summer of getting ready for it!

We have also been contacted by a local artist who (in my opinion) is by far the coolest person I know! She has offered to do something in Kiki's name to raise funds for her. This woman is so thoughtful and kind and as a mother to 4 smallish (?!) kids is so generous in giving her time up to even think about our girl. Anything this woman (who's name will be revealed once she gives me the go ahead) will be a great success and will bring some much need awareness to this part of the country. I can't wait!!!!

Also this year will see me enter my first Mini marathon, The Women's Flora Mini Marathon, I will be doing it for Cure Kiki and I will be looking for women to join me. Online Entry begins on 18th February so watch this space when I hound you all about joining me in this.

There are a few other small projects in the pipeline like a storybook with all the proceeds going to Cure Kiki too but we have to see how that goes. So all in all a big year ahead for us and I am sure a great year ahead for the death of RS!

We also hope to squeeze a trip to Disneyland Paris into the Summer, a new car and the chance of a mortgage into the year. Am I asking for much? Yes! But do my girls deserve it? YES!

And just before I go, I wish to leave you with a piece from FB (sorry if you already read it on my FB page) that was written by an unknown author:



I am wearing a pair of shoes. They aren't pretty shoes… uncomfortable shoes. Each day I wear them. Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yet, I continue to wear them and continue my journey....I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.... To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them. But, once you put them on, you can never take them off.

...I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No Mom deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a Mom who has a child with special needs. I will forever walk in these shoes.