A blog fulfils many needs.  For us it was an easy way of keeping friends and family updated with the daily changes in Alice’s life and sometimes it is a place to scream at the world for the inequality.  But sometimes it is nice to take a step back.  So a poem for you all.  The poem was originally called the Special Mother, but I think family is more appropriate. …

The Special Mother by Erma Bombeck

Did you ever wonder how the parents 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; son. Patron saint…give Gerard. He’s used to profanity.”

“Forrest; daughter. Patron saint, Cecelia.”

“Rutledge; twins. Patron saint, Matthew.”

Finally he passes a name to an angel and smiles, “Give them a handicapped child.”

The angel is curious. “Why them God? They’re so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a family that does not know laughter? That would be cruel.”

“But have they patience?” asks the angel.

“I don’t want them to have too much patience or they will drown in a sea of self-pity and despair. Once the shock and resentment wears off, they’ll handle it.”

“I watched them today. They have that feeling of self and independence that is so rare and so necessary in a family. You see, the child I’m going to give them has her own world. They have to make her live in their world and that’s not going to be easy.”

“But, Lord, I don’t think they even believes in you.” God smiles, “No matter, I can fix that. They are perfect – they have just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”

God nods. “If they can’t separate themselves from the child occasionally, they’ll never survive. Yes, here is a family whom I will bless with a child less than perfect. They don’t realize it yet, but they are to be envied. They will never take for granted a ‘spoken word'”. They will never consider a “step” ordinary. When their child says ‘Momma’ for the first time, they will be present at a miracle, and will know it!”

“I will permit them to see clearly the things I see…ignorance, cruelty, prejudice….and allow them to rise above. They will never be alone. I will be at their side every minute of every day of their life, because they are doing my work as surely as if they were here by my side”.

“And what about their Patron saint?” asks the angel, his pen poised in mid-air.

God smiles, “A mirror will suffice.”

Now  I don’t necessarily agree that we are Saints, far from it, Alice is hard work and we are knackered by the end of the day.  A small example for you,   Alice you stay in bed, don’t keep wandering around and go to sleep, don’t get up until 7am.  Now try that with limited language and no signing…… to a 2 year old

Sometimes it’s important to draw a line in the sand.  Alice’s speech and language are delayed.  Not a surprising comment, but how much is something less tangible. According to her most recent testing, Alice is currently about 1 year behind.  Oh god she’s a year behind! but actually its more of she’s only a year behind.  With everything that has happened since we discovered a year ago, I couldn’t be more pleased.  We have a target, albeit one that keeps moving but we can see “age appropriate” on the horizon.  The game is now to narrow the gap as quickly as we can. As parents we are now firmly AV, as confirmed by our continual use of “Good Job” to every spoken response. I think we may be slowly driving ourselves mad.

Alice is targeted to have 30 words in 6 months, her pace is picking up and we hope she does better than that.  We can count around 20 approximations.  One of the common misconceptions is that you should think of implantees in terms of hearing age.  But Alice has the brain of a toddler not an infant hence the increased expectation.  Normal 2 year olds have many more than that, so we have to up our game.

Daddy is sitting at home delighted that Alice can finally say something that sounds like Daddy. The joy the small things bring is difficult to put into words. x