Thursday, November 29, 2007

Elvis

My thoughts tonight are for my dear friend Karen and her family. Elvis (the cute guy in the middle) passed away today. I know he was 12, I know he was sick but I also know that of all the dogs I've ever met he was the coolest. He was a gentleman of vast proportions sometimes stinky but always loyal and loving. He was a lover of cat food stealing and coffee beans which he liked to scatter randomly around Karen's dining room filling the house with a starbucksy aroma, he liked to rise in the morning in his own good time and he always looked at you with wise eyes that told me that he'd been here before. He liked to use the restroom in private either hiding behind the wall in his garden or with his back to you, he'd look over his shoulder at me as if to say "hey, can't you see I'm peeing here" He enjoyed trash especially the stinky kind and the occasional cookie that was left just in his reach. (He was a great Dane so just about everything was in his reach!!)To me it's like losing a buddy so I can only imagine how my friends feels tonight. My thoughts are with you guys. Sleep amongst the clouds sweet Elvis, I love you ...

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 ...

Wednesday, November 21, 2007

April

Physical therapy and pain

March

Wiped out on medication.

February




Diagnosed with RSD and peripheral nerve damage in both legs.

January





Total agony

December

3 steps with her walker and in yet another rehab


The beginning




Lets jump!!

It's been 1 whole year since Emily was injured so we had a party!! Just over 1 year ago my dear friend Karen invited my children to a giant inflatable adventure playground but sadly Emily felt under the weather so wasn't able to go. When we realized the extent of her injuries Emily looked at me and told me that if only she'd have been able to go because now she never would again because she'd lost the use of her legs. This broke my heart.

I decided then and there that Emily would have goals. Each month I would set her a task until one day she would be able to function medication free and go jumping with her close friends. Today she achieved her dream. Stage one back 1 year ago was to get her to sit up just for a few seconds. From there she had to sit without help or support. Next came sitting on the edge of the bed for 1 full minute. 5 minutes followed that then time out of the room in her wheelchair. Slowly she achieved her goals and we progressed. Our main objective was to get her feet on the floor so we used animal weights. Emily had to put a mouses pressure on her foot followed by a rat, a cat, a dog, a monkey, sheep, horse and finally full weight, the elephant. By Christmas last year she reached Horse.

January bought elephant and a new challenge. The walker!! "Just 3 steps Emily, you can do it!" First 3, then 5, 10, 15, 20, 30, 50 and finally one lap round the house. All the time Emily's leg was up like a flamingo and locked in that position. We did extensive PT until April when she had botox in the back of her leg, an epidural was placed in her back to help with the pain from the massive PT that had to be done to "break" the hold on her hamstring. Another month long hospital stay.

In May her AFO was fitted and a Cane introduced. Again 5 steps then 10, 20 then once round the unit until 1 day she could walk with no Cane just a gain belt for support. We pushed on until 1 day she took steps alone, pride burst from her like beautiful fireworks and she danced again for the first time. Humble isn't even close to how this journey has made me feel. With each scared step I've been there for her holding her hand and willing her on at that time we were almost an extension of each other as my energy drained into her.

More goals were set for her and I set them high. To get her back to anything like a normal life she had to see a flicker of hope, progression was the key. She had until the end of June to teach herself to swim with 1 good leg in our pool, she did it! She had until July (her Birthday) to jump on our trampoline. A simple task to most but to someone with RSD in one foot this is extremely hard.

August's goal was to play beginners tennis and guess what? She made the final! In September she had to do 4 full days at school per week, October her goal was to take Hip hop classes and to kick all medication.

What was Novembers task??? To get back to lets jump with her friends and participate just like everyone else. With great pride I can confirm that a fun time was had by all tonight and as she's settling down for bed a huge feeling of achievement lays firmly on my daughters shoulders and rightly so.

Our next goal? To be at lets jump this time next year but with no brace and with more stamina. Congratulations Emily, this day was yours and I'm so very proud of you.

Thursday, November 15, 2007

Props!!

It's been a while since I posted because it's been insane here. Emily was one of 3 prop masters in her school play and that pretty much turned me into a taxi. With Tom's school time being different from Emily, play practice and doctors visits I've been zooming around all over the place.

Alice in wonderland was amazing. Watching Emily slide about on her stomach under a small rectangle of wood handing props to the actors took some getting used to. As you know I'm all about shoving her out there to live her life but this pushed me a little far outside my comfort zone. She told me it was OK, that only 2 people had stepped on her so far!! then proudly showed me a perfect footprint on her side. She's smiling and enjoying herself so what more could I ask. The play has filled her with a sense of normalcy so I'm looking for something to replace it now that it's over. I think I'm going to enrol her in a babysitting training course so that she can learn CPR.

Sunday, November 04, 2007

Tom cooks baked Alaska

While "cooking with Sam' takes a break from Thursday nights I'm taking him place. Today I taught Tom how to make the perfect baked Alaska. What a great job.

Emily and Andy

Best friends since 2nd grade.

Scary!


Carving her pumpkin!


Saturday, November 03, 2007

Free smiles

I've added a new link to Emily's blog. You don't have to download a ring tone but I can't add "cuppycakes" without the link below. Click the play button, trust me it'll be so worth it!! Emily absolutely LOVES this little song it's guaranteed to put a smile on your face.