Monday, June 16, 2008

Ramblings of a sad mom

Over the past week I have had several things happen that have my head spinning. The first was over dinner at my moms. Everyone sat down to eat. It hit me hard. I will have to feed this sweet baby EVERY meal for the rest of her life. Her hand function has decreased to the point that she cant do it at all.

The second thing was at the park. Avery's cousin Jules tagged along and played like any other child would. But my baby cant. She had 3 people cheering her on to do a simple task, raise her foot to climb a step. CLIMB A STEP! The simplest tasks are almost unobtainable for Avery. Things that come so naturally, automatic for us will never be that for her. She many improve some. She may not. My baby will struggle to do everything in life. It is just so not fair.

Then there is Cole. My 5 year old, high spirited child. We are struggling with potty training. He will go potty if we make him, but not on his own. Can you even fathom how many diapers I have changed it a matter of 5 years?!?!? The harder we push him to train, the more he resists. He has even reverted to an old, disgusting habit of playing with his poo. I have lost my cool several times this week with him. I have tried everything. Nothing is working. My kid is going to be in diapers for ever. Or rather my KIDS are going to be in diapers for ever!!

5 comments:

Gigi said...

Someone in the "Raindrops and Sunshine" book says---"RS is a miserable, tragic and crippling disorder. But look in your daughter's eyes and capture the warmth of her love and innocence. The beauty of the child quickly chases away the weight of her handicap and heals the human heart" Life is what it is and I know it sucks at times, but it also does have it's great moments once in a while. As your mother, it breaks my heart that you are in pain, but I can't fix this. All I can do is be there when you need me.
We love you

Brooklyn said...

OK...Gigi said it best - and her words made me cry! Thank goodness for our moms, right?!
Believe me I feel the SAME WAY! I obviously only have Brooklyn and no other children so your life is different than mine but the lives ahead for our daughters is going to be very similiar. I am so glad that I have you to walk this road with me (now if only we lived closer to each other!)
Honestly, call me whe nyou need to talk, vent, laugh, cry, anything. Girl...I can understand you like no other of your friends or family can. It is hard, really really hard and not fair SO NOT FAIR. Our daughters are so amazing and do not deserve this struggle (neither does Cole)I have a big ol' pity party for myself quite often.
I have a feeling we will have these days on and off the rest of our loves (or unless there is a cure - which would be AMAZING!)
Until then, we do our best and lean on each other and our families for support. I love ya...

Rebecca said...

Just know you're not alone. I know we sure feel it at times, but even though miles are between all of us, together we come with a common bond...our daughters...and us as sad moms. Meal time with families is always really hard for me to. I forfit a hot meal over and over again so that my daughter can eat first....I go to parks with big open grass areas so I don't have to focus on the big toys that my daughter can't play on. It sounds like you have a wonderful mom...Hang in there and know you are not alone.

-Rebecca

Doris said...

The other moms have said it so well. The only thing else I can offer is a virtual hug and that you are not alone.

Katy said...

Ditto all the above! You also have to give yourself permission to feel all of your feelings. You NEED to let go every once in a while to yell, scream, rage against the injustice, cry...whatever. But let it come and then let it GO. It is OK to feel angry, it's OK to feel rage, it's OK to feel happy too.

Love you!!!!