A Rett Syndrome Mother’s Day

Katie2 - Copy

Katie (l) age 3; Sean (r) age 2; Debbie (f) age 4 A gift everyday, all three.

As special parents know, holidays are almost always a let down. Christmas usually sucks so bad it borders on travesty. Mother’s Day is a complicated day for us mothers. First of all, you can almost guarantee that whole eat in bed thing ain’t happening. And if it does, it’s either being shared or thrown or gets cold while you do all the morning routine, BUT you can’t let your other children see that it’s not going well so when you eventually get to that cold meal and coffee, you eat it and rave about it and if you can…ask for seconds.

It’s an intricate juggle, Mother’s Day, especially if you have to “split it” between a disabled child and other siblings. It’s nearly impossible for someone’s feelings not to  get hurt. My oldest daughter would put so much effort into making me breakfast and one out of three Mother’s Day ended in tears because her sister “ruined it.” But it goes beyond that.

We’re mothers who on one hand cherish the children that we have and yet can’t help but mourn the child that was taken from us, by Rett syndrome. Some of us still have those children, but so many mothers have lost them both. How great a sorrow. It must be like someone punches you in the stomach every Mother’s Day.

For me, Mother’s Day the holiday is a bust now. My oldest is not here to make me breakfast, my boy is not here to “not fight with his sister”, my one and only wish each year. Katie will require all the same care, we will stick to routine as much as possible and pray to get through the day. But, I also feel that with a special needs child, every day is Mother’s Day.

Every day, I am blessed with smiles, a child whose head rests on my shoulder with her hand in mine. A beautiful girl, who is thoughtful and caring and very, very opinionated. (where could she have gotten that from?) I am fortunate beyond measure to be the person granted this life to be responsible for. I get to see every little advancement, I am kept humble and grateful for the smallest of things, like finding out that she likes the smell of a flower or gets shy when a cute boy talks to her.

I also know, we are not alone; we are surrounded daily by good thoughts, helpful tips, and in general, know that many people around the world care for my girl and are hoping for a cure every day. I am one lucky mommy.

This is the poem that came to me today, it may not be the most  up beat, but what comes to me, is what goes on the paper.

A Rett Syndrome Mother’s Day

Oh, Mother’s Day! How much you bring to mind-

the years our children laughed with joy,

used their hands to clap hurray,

feed themselves and shared their toys.

 

Some walked to us with flowers,

others, with us, laughed and played;

Before a thief came in the night

and stole that all away.

 

And still, we are mothers to children

that we love beyond all sight,

and we pledge to find and crush

the thief that walks through the night.

 

Neuren holds the lantern that lights our way,

Rett syndrome.org has laid out the path,

and all that was stolen, to all will be returned…

when the cure comes at last.

 

But, while we are rejoicing and

looking down the path at Life,

let us not forget those,

who can no longer see the light;

 

The childless mother be blessed

above all, with memories so sweet,

e’en though Life be fleeting

and flies  on winged feet.

 

Ah, Mother’s Day, how much you bring to mind

joy tempered with sorrow, sorrow tempered with joy;

love for the child gone, love for the child that remains,

love that time and circumstance cannot destroy.

 

Let not one be forgotten, let no Mother’s heart feel alone;

To those who chose a child or carried one in their womb-

A warm and happy Mother’s Day to the women

whose heart is now and ever a child’s home.

 

M. Lancaster

 

 

 

 

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This entry was posted in cure, hope, Neuren, Neuren Pharmaceuticals, rettsyndrome.org, Special needs siblings, Trail to a Texas Trial and tagged , , , , , , , , . Bookmark the permalink.

4 Responses to A Rett Syndrome Mother’s Day

  1. Linda E. Williams says:

    Happy Mother’s Day to you, my friend. As always, I love your written words. Have a wonderful day.
    Love and hugs, Linda

  2. melelllan says:

    Happy Mother’s Day to you, too. Love and miss you truly. Hope the book sales are going well, you so deserve it. Xo

  3. Rose & Renee says:

    Always inspiring words. Thanks, Mel!

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