Thursday, August 28, 2014


Sometimes people support us in ways we never expect. I got an email from a dear friend yesterday who has been sending all kinds of positive karma out to Maggie and me as we go through this medical and emotional journey.

My friend has a little girl, Carly, who is about six months younger than Maggie. Had Maggie been born ok, I imagine they may have been great friends, just like their moms. But life lays different challenges on us and that was not meant to be.

Interestingly, this friend and her daughter live across the country and don't really even know Maggie, excepet through my recollections of her.

So yesterday this email came in from the two of them:

"Carly has been sending positive energy to Maggie in a different way. Carly
made up an imaginary friend/bird that is always with her ... born mysteriously
from a gum ball. A blue gum ball. Her name is Viv; she's a gum ball bird (also
known as a G.B.B.) She is a very unique creature. Because she was born from
a gum ball she is so very tiny. And fragile. She is blue with little green fuzz on
her head and has a little orange beak. Sometimes Carly is able to get through
a rough day or time just knowing that Viv is with her.

Carly thinks that Maggie could use her own Viv right now (so she's manifested
one for her that's there with her even as we speak) Maggie's G.B.B. is named,
Mim. She was born from a pink gum ball. She is bright orange with a little pink
tummy. She has a little green puff on the top of her head. Mim, like Viv, is so
very tiny and always with Maggie. Mim especially likes perching on Maggie's
sunglasses when she wears them! Otherwise Mim likes to hang out in and around
Maggie's beautiful strawberry hair. We think that Mim will help Maggie through
the roughness of today and the coming weeks."

Mim is also helping Mom through the roughness of today.

The Special Mother

Recently I gave a speech at a Bayada Homecare Nurses in service day in Delaware. It's part of what I do as the founder of parentspeak. Not sure I've ever blogged about it, but it's an organization of sorts that I started five years ago with a dear friend, who is also a mother of a severely neurologically impaired child.

We began our journey in an effort to help medical and educational professionals who help our kids. We developed a presentation that gives deep insight into what it's like to be a parent of a special needs child like ours. If you remember, I tried early on to get our kids noticed by writing to Oprah, but was denied. In hindsight, I don't think the message at the time was clear enough for Oprah, nor was my own head or heart for that matter.

Now we are dedicated to providing insight in to our lives under the premise that if you know us, as parents, you will be better able to help our children. We are the gatekeepers to our children and their care demands supreme partnership. If we can't partner with those who help our kids then we believe their care will be impacted. It's a bit tough to explain here, but suffice to say that we have given the speech for five years now to at major children's hospitals, trade shows semonars, annual conferences, etc. Our audiences have been as large as 500 (at a keynote address) and as few as 25 attending continuing education credit class. We don't have a website, we don't get paid, we don't promote. We just get our gigs by word of mouth. And that works for us.

So a few weeks ago, I gave the speech without my partner because her kids were sick. The audience on that day was about 100, mostly nurses, some physical/occupational therapists, a few administrators and a handful of parents of special needs kids.

After the presentation, a woman approached me and said, "God bless you. My granddaughter has special needs and we are all struggling." She began to get choked up and then asked for my address. She said she wanted to mail me something she thought I would appreciate. I gave her my address and she gave me a big hug, with tears in her eyes again she said, "Thank you. Really, thank you so much."

About a week later the following arrived in my mail.

November 6, 2009

Dear Molly:
My name is Pattie and I briefly spoke with you on Thursday, November 5, after your talk at the University of Delaware seminar for Bayada. I told you that I have something for you to read and to pass it along to your partner. You can also make copies for all the other parents who might need some inspiration and words of encouragement and support.

You are a true inspiration of dedication to ALL mothers.

May God bless you and your family and especially your little angel, Maggie.


Here is what she sent.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Please pass this on to anyone who may benefit from it. Even now, nearly eleven years after Maggie's birth (and when I think I have adjusted), I still grieve. This was wonderful for me to read.