She explained to me that she did not have much knowledge on the subject and then went on to tell me her story.
Her only child was born with cerebral palsy, dystonia, essential tremors, neuropathy, and brain atrophy. He is now 42 years old and she is the primary caregiver to her child. She has to do everything for him and has done everything for him his whole life. Her marriage of 30 years...over. Her only link to the 'outside' world is her computer. She hasn't gone to a movie or even had lunch or coffee with anyone in the last two years. She used to write and direct commercials and yet, everyday she sits in front of her computer and she stares at a blank screen, not knowing what to write. Not feeling the joy she knew Heavenly Father wanted her to write about.
I know a little of what she is feeling because I, too, am the mother of special needs children, a son twenty-six and a daughter twenty-five. I also spend each and everyday with them and have very little contact, other than my computer, with anyone except my husband and his parents. My family live far away and, well...that's another story in it's self.
True, my children are easier to care for than her son. They do things on their own and even though they are in their 20's, it can sometimes be like having eight year old twins that don't get along very well... AT ALL!
We have our tough times and this week was no exception! But, we have Joy...
This is what I told her, "Write about your son! Write about the feelings you have when you look at him, hold him, if he smiles at you or not...write about you and what it means and has meant to you as a mother of a special needs child...Write about the joy that comes from a child that gives you unconditional love...Write about the joy that Heavenly Father must have felt when you agreed to be the mother of one of his most Valiant Angels here on earth..."
Yes, there are times when I don't think I can't do it one more day...especially when other things rear their ugly heads in my life. When outside things threaten to reek havoc with my 'very structured...no changes, please!" world...sometimes just the littlest thing can change the dynamics of our day and then all hell breaks loose and it can take days to get back on the right track again. It is those times when I wish people, strangers or family, really knew what life was like for us and would take that into consideration before screwing everything up with sometimes just a simple phone call.
But there is Joy...
My children make me laugh...everyday! They will say or do something that is just so sweet or so wild and off the wall that I can't help but crack-up and that brings me joy. I get 'good morning' hugs everyday...sometimes I don't get them until the afternoon, but I get one everyday none the less and that brings me joy. My husband calls me his hero (but, really he is mine) and that brings me joy. When I see my daughter empty the dishwasher and know that she can do it (even though she doesn't like to) that also brings me joy and when my son compares me to the sunsets we watch together or the flower-weeds he brings me from outside...bugs and all, well...that, too, brings me joy.
Most of all, the unconditional love that they show me each and every day of their sweet lives has brought me great joy! That is something that is priceless...to be loved without reservation, without preconditions... (It doesn't take $100 tennis shoes or the newest and greatest video game or the designer label on the butt of their jeans...) well...that is just the greatest joy of all!
And then I told my friend about a lady that sent me something 25 years ago...I didn't know her at all. I was collecting on her debt that she owed the company I worked for and we got to talking and I told her that I was having a hard time dealing with the needs of two 'special' children and two older, perfectly normal and wonderful children while working full time.
She explained she also was the mother of a special needs child and understood my apprehension and fear. She said she would send me a letter that a woman gave her years ago that helped her when she was going through a rough patch with her child.
This is what I sent to my friend for her to read...
I'm going to include it here because I know there are others out there that have special needs children and maybe, just maybe, it will help them, too.
Special Mothers Sought
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 were chosen?
Somehow I visualize God hovering over the earth selecting his instruments for propagation with the great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Mathew.”
“Forrest, Marjorie, daughter. Patron Saint, Cecelia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally he passed a name to the Angel and smiles, “Give her a handicapped child.”
The Angel is curious. “Why this one, God, She is so happy?”
“Exactly,” smiles God. “Could I give a handicapped child to a mother that 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 wears off, she’ll handle it.”
“But, Lord, I don’t think she evens believes in you.”
God just smiled. “I can fix that. This one is perfect. She has just enough selfishness.”
The Angel gasps. “Selfishness, is that a virtue?”
God nods. “In this case, yes. 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 know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.”
“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 day of her life because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the Angel, his pen poised in mid-air.
God just smiles again and says, “A mirror will suffice.”
I do not know who wrote this, but I can say that on the days when I thought I just couldn't do it another day or minute...I would get this out and read it and find the inner strength that I knew my Heavenly Father gave me to get his job done.
And that, too gives me joy...
prayers,
Cindi
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