Friday 29 May 2009

been a while since i updated and im very sorry xxx dont know what to say really james is sitting very well now which is great but as good news goes thats where it ends x

he is not himself and hasnt been for sometime or maybe he is himself and i just cant accept the new james ?

he has been in our bed every night now and spends a lot of the night sobbing uncontrolably on and off through the night x we believe this to be seizures which is heartbreaking this means my boy is now seizing 24/7 which i am so struggling to come to terms with seeing my little boy suffer like that all the time is horrible and i wanna make it stop but i cant and it tears me up it really does xx

also my baby boy is now 4 can u believe it he is getting so old lol but still gorgeous and still the occasional smile which i love to see it truly melts my heart when he smiles x

Monday 18 May 2009

I am... for Mothers
By Michelle Guppy, May 2000

I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of epilepsy* - I looked at it with defeat - thinking there was no way I could climb over it. I then pondered the obstacle before me, and I then said to myself over and over, "I think I can, I think I can...," then I slowly started climbing the mountain saying to myself over and over, "I know I can, I know I can,...." and then I made it over that ominous diagnosis of epilepsy and continued my journey. I am the little engine that did.

I am more devoted than Noah's wife. I am cooped up in this "houseboat" for 365 days and 365 nights a year, constantly taking care of and cleaning up after my "herd of animals." And when the storms of isolation and monotony become most unbearable, I do not jump ship. Instead I wait for the rainbow that is sure to come.

I am Xena. Real life warrior goddess of epilepsy. With my steel plated armor I can fight anyone who gets in the way of progress for my child. I can fight the stares and ignorance of typpies - those without epilepsy in their lives - and educate them as to why my child is the way he is, and why he does the things he does. I can fight the schools to have them properly educate my child. And I can fight denied insurance claims to get coverage for my child. Yes, I am Xena - and I am armed for battle...

I am Betsy Ross. I am part of History by my contribution to the epilepsy Awareness Quilt -- many pieces of fabric representing many states, stitched together, that will collectively symbolize Freedom. Freedom from the lack of information about epilepsy, Freedom from not knowing what causes epilepsy, and Freedom from the lack of funding and research to treat, overcome, and live with - epilepsy. Like Betsy's piece of fabric, my piece of fabric will someday sit in a museum, for others to see my 12.5 x 12.5 inch memorial of a battle well fought. Whether my child is "cured" in my lifetime does not matter, in the end what will matter to me and to my child, is that I never surrendered.

I am the Bionic Woman. I have X-Ray vision - I can see through the mask of epilepsy on my child's face, and see the beauty in his soul and the intelligence in his eyes --- when others can't. I have super-hearing - I can look at my child when he smiles at me, and hear his voice say, "I Love You Mommy," --- even though he can't talk. Yes, I am thankful to be Bionic.

I am Mary. A not so well known mother of an epileptic child who was brought here to touch the souls of those around him, in a way that will forever change them. And it started with me. By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life. Things like keeping the Faith, never losing Hope, and knowing a Love that that words cannot express. Yes, I too am blessed by a special child, just like Mary.

I am Superwoman. I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to chase my child as he dashes out the front door and heads for the busy street. Oh yes, without a doubt, I am Superwoman.

I am Moses. I am doing my part in leading other parents and society to more awareness, knowledge, and resources, and most of all - Faith. Like Moses did, I too, will sometimes meet with resistance from those who don't believe. And like Moses, God will give me the small Miracles here and there, needed to accomplish my mission.

I am Stretch Armstrong - a mom that can be stretched beyond belief - and still somehow return to normal. I can stretch limited funds to cover every treatment and therapy that insurance won't. I can stretch my patience as I explain my child's biomedical issues with yet another uneducated doctor. I can stretch what time I have, and share it with my husband, my children, my friends, and still have some leftover to help others. Yes, my name is Stretch. And I have the stretch-marks to prove it!

I am Rosa Parks. I refuse to move or waver in what I believe is right for my child --simply because my view is the minority, not the majority. I refuse to believe "What can one mother do?" But instead, I will write, call, and rally to the government, and do whatever it takes to bring equality for my child.

I am Hercules. The Greek god known for strength and courage. The heavy loads I must carry would make others crumble to the ground. The weight of Sorrow, Fear at uncertainty of the future, Injustice at having no answers, and from Tears of despair, would alone possibly be too much, --- even for Hercules. But then the Joy, Laughter, Smiles, and Tears of pride, - at my child's accomplishments, - balance the load to make it easy to bear.

I am touched by an Angel. An Angel who is often described as living in a world of his own. And it's true. He lives in a world of innocence and purity. A world without hatred or deceit. A world where everyone is beautiful and where no-one is ugly. A world where there is always enough time. A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past. Yes, I most certainly am touched by an Angel, and I sometimes think that his world is better...

I am a mom of a special needs child, all the above, and so much more. Some days I will want to be none of the above - and just be a typical mom with a typical child, doing typical things. On those days I will know it's o.k. to be angry, and to cry, and to lean on my friends for support. Because after all, ---the most important thing I am, ... is human.

And on this special day, and every other day I need to, I will read this as a reminder, of just who it is, I am.