• Inspiration for an average Tuesday

    August 11, 2009 By in Uncategorized Leave a comment

    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

  • Anything else?

    July 29, 2009 By in Uncategorized Leave a comment

    When Alice was assessed for her CI, she was subjected to a whole battery of tests to check that all else was well. Everything seemed ok, although her eye tests showed she had a slight astigmatism in both her eyes. This is not, we were told, uncommon for children of her age and she would most likely outgrow it, but we should get it checked in six months time.

    Six months was up today.

    To cut a long story short, the testing and subsequent converstation did not go well. Alice still has her astigmatism and she is allegedly, and on the basis of some fairly rudimentary testing, slightly long- sighted.

    “So if you’d like to go and wait outside we will get her some glasses made up”

    Excuse me? A simultaneous and rather terse No! was the response from Mummy and I. Does anyone else want to clamp anything to poor Alice’s head for God’s sake?

    The ensuing converstion with the optometrist was, shall we say, rather lively. She clearly did not understand the implications of a CI for Alice or anyone for that matter and, more importantly, the pressures it puts on her already, particularly at this key time.  I have nothing against Alice wearing glasses and, if it proves necessary in due course, she will no doubt do so, but not now. She has enough on her plate already.

    In an effort to convince us, the optometrist set out to contradict herself on every point as to whether glasses were actually necessary or not. We were particularly impressed when told that if we didn’t do anything now, Alice would not be able to drive and might not be able to pursue certain careers. For Christ’s sake – Alice is two and a quarter and until four months ago couldn’t hear anything – have you never heard of perspective and priorities?

    Anyhow, we will be going back in three months to no doubt tell them where to stick their glasses again. I shall make sure I have had a good breakfast that day.

    On a more positive note, Alice continues to progress well. She was at AV again this afternoon with the wonderful Catherine. Catherine seems pleased with Alice’s progress and Alice seems to love her sessions there. More importantly, the messages and exercises we take home have brought the best out in Alice and, I am convinced, are reponsible for her amazing progress thus far. Sadly, Catherine is off on maternity leave for 12 months as of tomorrow, but Alice had the honour of being her last session before she leaves. We will both really miss her, but look forward to wowing her next year when she gets back. Thank you so much for all you have done for us and we wish you and your new baby all the best. We couldn’t have got this far without you.