Wednesday, November 28, 2007

My Confusion

This has been a tough year. For me it's taken it's toll on many areas of my life, the relationship with "friends" and family, financially, mentally and physically. It's no secret that I now carry a few extra stress pounds but a diet will have to wait until I feel able to commit to it 100% and now definitely is not that time. I look old and tired in fact I hardly recognise myself these days but again when the time's right this to will change. Financially it nearly ruined us. At times I've wondered if we'll keep the house until Christmas, if we'll have enough money to buy school supplies, fruit and vegetables and things Emily and Tom need for basic living.

Mentally this year I've been pushed to the limit. In the beginning, the thought of jumping off the hospital roof holding my daughter didn't seem as scary and ridiculous as it does today but you have to understand the extreme stress I was under. For 3 1/2 weeks I lived off black coffee and food from a vending machine, very little sleep especially as I had only a wooden rocking chair. Thanksgiving flew by in a blur. I missed our normal Christmas traditions starting with my children on Christmas eve and this made me really sad. I didn't wake to happy squealing children on Christmas morning, I woke to beeping, to "sorry, just let me take your vitals", to crying and to acute disappointment and despair.

Ask any mother with a chronically ill child and they will tell you that during this time you keep your head down and focused on keeping everything together. You can't look up for a second because if you do you'll lose it. If you start to cry you'll never stop so just keep your nose down and push to the end. Mom's with sick kids need gentle help. You have no idea what it's like to be a parent in control of everything one minute and the next you're free falling through the air not knowing where you're going to land. If you're like me you'll try to do it all alone until one day you're so sick you fear you might collapse and you finally admit to your friends that you need a little help. If you're lucky like me you'll have a group of special people who try to catch you. I'm very bad at asking for help, always have been and actually I've very unlikely too LOL but really good friends know what you need and just do it.

The people who you would think would jump in with both feet are our parents but sadly both have fallen by the wayside this year because they don't get it. I write in this diary each week to keep them updated, this is as close as I can get to actually screaming HELP US! Help me feed my children, help me play with Tom, help me pay a bill, do laundry, cook. Help me do the things I'm failing at because I can't be everywhere at once. Tell me it's going to be OK, that I'm doing well, that you're proud, hold me ... Don't sit in silent judgement because you're just not getting the attention that you think you deserve, jump in, do something. Don't make me beg. How dare you ...

Today Emily is back to using a cane. Can you imagine how that makes me feel? How Emily feels? I'll pull strength from somewhere to stay positive and get Emily back from her flare up because that's what I do best but please don't expect me to "be there" for you because my nose is to the floor and I'm pushing to the end. Don't tell me that my silence is " no way to ask for help and it's about time I learned that" don't tell me that "No Christmas presents for you until you come here (5 hours away) and get them". Don't you people realize that you can't come first? That my fight is a tough one and that I need to stay focused to be everywhere and do everything that needs to be done. Why is it so hard for our families to understand? Why?

I don't know why it's so hard for our parents to understand because we are their children and we're struggling. What parent wouldn't want to be there? I won't forget but I can live with it, I just hope they can ...

3 comments:

Dave said...

What a great blog you have. I have been reading it for months. Thanks for sharing.

Dave

www.cerebralpalsylawblog.com

burrsmom said...

Know that I love you and I understand. I could not imagine any right thinking person blaming you for anything that you have said. They are missing out on so much...not only sorrow and worry but joy and pride in your accomplishments and how far you guys have come. Please try to not let them get to you. We think you are wonderful.

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