No News and Not Good News

Yeah. I am having so much trouble updating here on our blog because I find it so much easier and quicker to write on FaceBook. Some of you already know. Aly was admitted into Cook Children's Fort Worth on Monday and will remain there at least until Saturday. She is on oxygen and getting two intense hospital-strength antibiotics plus a strong steroid. William and I are trading off 24 hour shifts between the hospital and home. Thanks for your prayers for all of us. Check on us at FB or try back here. I will try to be more diligent to update here.

I thought I would include this wonderful poem by a fellow mom of a child with Rett Syndrome. It puts our life in a realistic perspective. Thanks for checking on us! And most of all, thanks for praying! MR7


I AM…(for mothers of special needs children) by Michelle Guppy

I am the little engine that did.
When on my journey in life, my tracks led me to a mountain-a diagnosis of (syndrome or disease) Rett Syndrome, 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 my self 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 and continued my journey. I am the little engine that did.

I am more devoted than Noah’s wife.
I sometimes feel overwhelmed in my “houseboat”-365 days and 365 nights a year, constantly working with and teaching my child. But when the storms of isolation and monotony become most unbearable, I do not jump ship, instead I wait for the rainbow that is promised to come.

I am Xena.
Real life warrior goddess of (syndrome or disease) Rett Syndrome. With my steel plated armor I can battle anyone who gets in the way of progress for my child. I can overcome the stares and ignorance of those without a disability in their lives-and educate them as to shy my child is the way he is, and why he does the things he does. With my sword of persistence, I can battle the schools to have them properly educate my child. Yes, I am Xena-and I am prepared for any battle that might come my way.

I am beautiful.
I have hairy legs because I get no time alone in the bathroom, and bags under my eyes from staying up all night with my child. The only exercise I get is the sprint from my house to my car-to take my child to therapy. Dressed up to me is, well-just that I had a moment to get dressed. They say that beauty is in the eye of the beholder-and so even on the days when I don’t feel very beautiful-I will know that I am…because God is my beholder.

I am the Bionic Woman.
With my bionic vision-I can see through the disability my child has, and see the beauty in her soul, the intelligence in her eyes-when others can’t. I have bionic hearing-I can look at my child when she smiles at me, and hear her voice say, “I Love You Mommy.”-even though she can’t talk. Yes, I am thankful to be Bionic.

I am Mary.
A not so well known mother of a Special Needs 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 the joy of just living in the moment, the Peace of knowing that God is in control, never losing Hope, and knowing unconditional Love that the 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 rescue my child from danger. Oh yes, without a doubt, I am superwoman.

I am Moses.
I was chosen to be the mother of a Special Needs Child. I may at times question whether I am the right “man” for the job-but God will give me the Faith I need to lead my child to be the best he can be. 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 bounce from doctor to doctor in a quest to treat my child. I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends. 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 if I have to, and do whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.

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

I am touched by an Angel.
An Angel who lives 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 in some ways, his world is better.

I am a true “Survivor” The mom of a child, who has faced, is facing , and will face, some of the most difficult challenges life has to offer. I am ready for the challenge and have God-given endurance to last until the end. Along with a sense of humor to cope with all the twists, turns, and surprises along the way. Oh, yes, I am a True Survivor and I don’t need to win a million dollars to prove it…

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 ok to be angry, and to cry, and to lean on my family, friends, and church, for support. Because after, the most important thing I am, is human………

www.rettsyndrome.org prayer to care