I beg your forbearance as I write today not about weight loss or my Journey, but about my first-born son, Danny

Danny was born 21 years ago today.

Yes, it seems like yesterday. Yes, it seems like a thousand life times ago.

Danny is a handsome young man, nearly 6 feet tall, light brown curly hair, hazel eyes, lean and lanky with a winning smile and a devils glint in his eyes.

He is funny, clever, full of mischief and full of love.

Danny will never live on his own. He will never drive a car. Danny will never hold a full time job, perhaps not even a part time job.

Danny is severely learning disabled. He will never develop past about the age of 4. He was born with Fragile X Syndrome. His X chromosome doesn’t work right and because of this, Danny, my handsome, loving, funny young man, will always be a child.

Missus and I were ill prepared for this.

Danny was born to perfect APGAR scores. He was robust and had a lusty cry. He was perfect, with all the right parts in all the right places. For the first 6 months we had no reason to be concerend.

Now we know

We didn’t then.

I won’t go in to the long list of challenges that we have faced raising Danny or that Danny faces as a daily routine.

I won’t write here about the damaged family relationships because some people could not accept Danny as a member of the family.

I will write about the love most of our family has always shown Danny.

I will tell you here about the love and support we have been so fortunate to have. I will tell you that my siblings and their spouses and children, Missus sister and mother, my Aunt and my Uncle and several cousins have all shown Danny love and affection even when it has not been easy to do so.

I will tell you about the on-line friend from California who has never met Danny but shows her love and affection for him by always asking after him.

I will tell you about the friends we have here close to home who try to include this loving but difficult child in get-togethers and who understand that we host parties because it is the only way we can really enjoy the company of our friends.

I will tell you about the woman that dated my father the last years of his life and who is in every way a grandmother to Danny and who will tell us to go away for a weekend so she can watch Danny.

I will tell you of 21 years of love, pain, joy and sadness.

Today my baby, my first-born son turned 21.

I did not get to watch him play little league, or soccer, or send him off to his prom, to college, or teach him to drive.

Danny didn’t get to learn to swim, or ride a bike. He will never know the pleasure of reading a book or writing a poem.

Yes, it seems like yesterday and yes, It seems like a thousand years ago.

21 years ago today my life changed more than I could have ever imagined.

21 years ago my heart was irretrievably stolen by a 7 pound, 6 ounce little boy.

He still holds my heart completely.

I wrote this two years ago for my Danny.
Peace

My forever child

My Danny

6/13/2010

My forever child, forever my child. Never grow up, though you grow older. You are my forever child, still enraptured with discovery, still carrying the surprise of childhood though no longer a child.

My forever child, forever my child. You find the world so large and confusing, so scary that you sleep in Mommy and Daddy’s room when the thunder is too loud and you tell the fire whistle to shut up. Still so young. You hop and you skip when joy washes over you and you laugh at knock-knock jokes and shave and a haircut.

My forever child, forever my child. We revel when you read a sentence, or tell us a joke, you get goofy and silly and want Daddy to carry you to bed. Trapped in youth you are a child at your soul. You can dance and sing and make us laugh and with the same ease you can make us cry.

My forever child, forever my child. I read stories to you and you tell me I get them wrong. You remember everything, every hurt, every laugh, every unkind cut, every smile. You know who called you handsome; you know who called you names.

My forever child, forever my child. You have no hate or malice in you. You know only love and sadness. You know whom you love and who loves you, and you know what makes you sad though you can never say why.

My forever child, forever my child. We dwell on that which you do not have, that we cannot give. We forget that you are happy being you. You give us magical words, so uniquely yours. Cheppep and Humplings are delish; the Nananks are the best baseball team.

My forever child, forever my child, silly games and hugs and kisses and days at school, this is the fullness of life for you, my child, my life, forever my child.