Going on 7 days without help....I am starting to feel tired. This house is just non-stop stuff all day long. If its not a med its a feed or a diaper change and on and on......I have the first feed starting at 6am and I literally don't stop moving till after 11pm every night....We are suppose to have a nurse for Kaden and HCA for Elle every second Saturday night but turns out Elle is the only one that will be having someone this Saturday. Its the girls second time being here so we will be going nowhere. It takes me a LONG time to feel comfortable about leaving her with someone new. Especially about feeling confident that this new person would be able to resuscitate her should she have a seizure.....Much to Pauls dismay we will be cleaning up the basement as our hardwoods will be coming in the next few weeks (for the main floor) and if I have to spend a bunch of time down there I'd like to be able to find my way to the couch!!!!!
The worst part about being 'trapped' (Paul hates when I say that)at home is that even if I wanted to get out I can't on my own. Elle has to be in her wheelchair/stroller when we go somewhere and Kaden is a baby so how is a person suppose to get out??????? OH!! That's right I don't....I am hoping that this is not a taste of what its going to be like in the summer. From what we are told our 'help' is cut off for the summer. I think the exact words were..."normal children don't have help in the summer so why should we?!" I hate how they try to lump us into the same category of 'normal' so they can save a few bucks....as they all go home to their 'normal' lives and quite frankly have NO CLUE. Our world does not allow us to meet people in a regular way. We don't go on play dates ( not that we can't I just don't think I truly fit into 'normal' and am worthy to attend) I think when you have children (correct me if I am wrong) you meet friends through your children and if a child is wanting a play date with a friend from school it surely isn't going to be with the little girl that can't walk or talk......sad but true....A really good book to read to totally see what its like to be in our shoes is "A DIFFERENT KIND OF PERFECT". I read it over and over. I love this book cause it makes you feel like your not alone.
We had a couple of people here today measuring for a wheelchair lift for the backyard. We have to take out our existing deck, build a new deck level with the patio doors, put in new doors (ones that lock from the outside). I truly hate anything to do with medical looking stuff....HATE IT!! I also hate the wheelchair and refuse to use it. We have a stroller type thing and that's what I use. The only time you'll see me pushing that thing is at school....
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This blog is about our children Elle and Kaden who mean the world to us. They have had to face severe health related issues that many children or parent would run scared from.....we love them and will be there for them through all challenges that come their/our way.....
6 comments:
Candace, It is good to share your feelings, and let the world see inside your life. The beauty of being a parent is that is is constantly unpredictable. Just when we feel lost and alone, something comes our way to make it brighter and more manageable. I am sure there are bright opportunities coming your way too. AS for being trapped, I might just have to push a stroller with you this summer, just to get out to the park or the mall. And best of all to see you all :)
Candace, I can see why you feel trapped, do they expect you to push two strollers? If you want a playdate, we live so close and could walk over anytime. I am still on mat leave for another week, then the first 2 weeks of June I just work Mondays and Tuesdays. Ana looks at the pictures on your blog and always asks when she can see them.
Kristine
It's take a lot of courage to share your world with us all. I totally appreciate the insight and feel lucky to be a little part of your lives.
Love,
19
Hi Candace,
My name is Kristen and I recently lost by 6 month old to SMA. We live on Evelyne Reese. I have a 5 year old and a 2 year old daughter and we'd love to get together with you. Just say the word. I'm not sure what kind of care your children require exactly but I would be happy to sit one night and help wit feeding tubes, administering meds etc while you get some well deserved rest. I had to to do that for out little one as we chose to bring her home. Let me know if you are interested. Kristine Pejovic can vouch for me.
You can email me at mcdowell DOT kristen AT gmail DOT com
I read your blog entry today and got some insight into your day to day. Elle and Kaden are very lucky to have such loving and special parents. We could meet up with you on a Friday morning sometime if that is convenient for you. Let me know via facebook if you'd like.
Jenn
Sounds like a great book, Candace, I am going to read it.
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