Melanie Jean A.

Melanie A., 4 January 5, '92 - February 23, '96 pneumonia

MELLIE HAS A WEB SITE OF HER OWN

By Gramma Judy

Who would have ever thought 14 months ago, that our beautiful little Melanie would have a page on the web all her very own? Our lives have sure taken some unusual twists and turns in the last five years, but who would have ever known?

On 5 January 1992, the Good Lord gave our daughter and her husband a beautiful little girl. Oops, a problem, she's hydrocephalic (waterhead for medically illiterate people like us). 'She can live a normal, healthy life, only 3% have serious problems.' Shunt surgery is on the 8th, NICU - neonatal intensive care until 23 January, her first well baby check is in one month. Oops, we think she cannot see. Her first eye surgery on 28 February, findings include cataracts and totally detached retinas. Oops, she really cannot see. By June, we knew it was called Walker Warberg Syndrome which includes 11 other syndromes, several which she had.

In the meantime, we have a beautiful little girl who seems to be okay. The Shunt surgery went very well and they eye patch will only last 10 days. She lays and is totally aware of her surroundings. She knows the difference between the 4 caregivers, Mommie and Daddy, Gramma Judy and Grandpa Terry. Mommie goes back to work because Mel is covered on her insurance and only God knows where this is going to take us. She now has a "pre-existing condition".

By May we know we may be in trouble with what turns out to be 'a severely impaired developmentally disabled baby', so we start to go to Early Intervention at the elementary school two blocks away. We 'play' and we 'talk' as we always have, only more structured and with a serious purpose. Mel's eyes are always open and she his a sponge observing and taking in everything. She is the 'Best Kid On The Planet' and I tell her so 20 times a day. She is eating good and growing good and the best snuggler ever born. She plays with Mommie's hair in her fingers and always manages to find Grandma's gold neck chain. She strokes the back of Grandpa's arm like it is a guitar. She does not do this with other people.

Her hearing is so good that the snip of the nail clippers wakes her up from a sound sleep. Blind children use their tongue to focus and she has learned how to tell us she is hungry. She whimpers once for a wet diaper and will continue to lay in it, as long as it takes you to notice, it might be time for a change. She learned to smack her lips for kisses and stretch for change my position, I am sick of sitting like this. She loved music and seemed to try to sing with us. She would smile because the clock ticked. She loved her toys, talking critters, musical anything and all the textures her teachers wanted us to try. She non-vebally let us know her likes and dislikes. Somehow she was able to move her legs, arms and/or torso enough to rock the lazyboy and the bouncy seat. Before the seizures took so much away from her, she was able to move the archway swing, as well.

When she was 13 months old, we started to see seizures. Epilepsy was confirmed by an EEG. We started a new roller coaster with medication changes, sometimes daily, to get the right doses and different prescription for her type of seizures, added to the eye drops, we had already been doing since eye surgery. Mellie never did anything easy, if someone went down the street out front with an infection, she caught it. She got pneumonia because the seasons changed. She got conjunctivitis (pink eye) in the hospital on antibiotics and a multitude of over 'stuff'. All the time, she was smiling and saying 'aaaah' when she wanted Mommie or I to come to her. Barney was her buddy and she didn't like to hear Hickory Dickory Dock. I always new what song was playing on her earphones when it started. Anything for positive stimulation, necklace beads from garage sales, sponge shapes, and smooth wooden craft shapes, little cars and all the different fabrics you can find. Her wardrobe was as big as Jackie O's. We have over 600 different pictures and 2 hours of video that remain.

When her cousins came near, she blinked her eyes like she had sand in them and tolerated fingers in her ears and up her nose and sitting on her legs when she couldn't get them out of their way. They played with her toys and she loved every minute of it. Without ever holding her head up, sitting up, rolling over or ever speaking to us, she loved us. Everyone around us, knew we loved her more than ourselves. Her entire life was soft pillows, cushions, rolled towels, and a dozen handmade baby blankets, just for her. She took up our days and nights for just over 4 years. She is our child, grandchild, great grandchild, niece, cousin and half-sister and she never did anything to deserve the things she had to be subjected to.

God loaned her to us for such a short time so we had to make the best of it and try to put quality into a life we didn't think we could possibly get quantity from. In her 4 short years, 1 month and 18 days, she attended bridal showers, baby showers, many, many weddings, and funerals. She loved all the men in uniform at the Boy Scout dinners, she went to Sesame Street Live at the Fox, roller skating in her wheelchair and she went to Memphis, Tennessee, on vacation, to see Aunt Peggy. She attended three family reunions a year, when Mommie's work schedule and her health permitted, some in Ohio, most up north. She loved her school teachers at the ISD programs. After she started going full time, her special ed teacher and I discussed whether she liked to ride the lift gate, on the school bus, or if she liked George the driver, best.

Now she is in heaven, she is a butterfly out of her cocoon. She is with all her other grandparents hugging her, riding ponies, playing in the fields full of flowers and getting into cupboards. We would not bring her back for one second, but we would not have missed the ride for anything., If the Good Lord chooses to give us another beautiful Melanie, we can do this again. I would stop everything and start tonight.

You go through it, so you can get through it. You learn all the stuff you never wanted to know, but now must. When she is so 'completely gone', you wish you could have her back to do it all again, if she could only be somewhat healthy and a whole lot happy. Nothing less will ever do. I have lost both parents, all my grandparents, aunts, uncles, cousins and a host of close friends. Nothing I have ever done or seen, compares to the loss of our Melanie Jean. The hole in our lives and in our hearts, will never fill. No one will replace her and nothing we do, will stop the wanting to hug her, one more time.

When I told Lyssie, I have the two most beautiful granddaughters on the planet, she said, 'What about Mellie'? Pretty good for a 6 year old. Paige at two said, 'I can wear Melwees clothes, cause she's in heaven and don't need them anymore'. Baby Girl, we miss you sooooooo much. Gramma is sending you a million more kisses! You Are My Sunshine, My Only Sunshine.

God Please Help Us Get Through This, Gramma Judy

Thank You Compassionate Friends for your care and concern.
Melanie's photo page address is:
http://www.oocities.org/tcf-troy/PhotoAlbum/MelanieA.html
and this page:
http://www.oocities.org/tcf-troy/MembersWrite/MelanieA.html