Aug 23, 2011

I'm not a downer, that would never be a word used to describe me by anyone I know...but lately I feel like one. It has actually been the cause of my blogging hiatus. Usually I'm just a plain old bad blogger, but I have actually wanted to blog, except everytime I went to think of the next post, it was only downer thoughts. And since it has been too long, I am giving in. This post may no make sense to all and may not have any specific flow to it, but I think I need to get it over with. :)
I am tired of the fight I feel within me all the time. Recently we have had to start bandaging Zachary's bottom as he has a pressure ulcer from his tailbone. As a result of where his Spina Bifida is, his tailbone does not have a natural curve to it, it points straight down. And since he is on the move, the wear and tear of sitting, falling and general moving has created this sore. It started about 6 months ago and has just progressively gotten worse. I didn't like how it was developing and I made an appointment to see a Dr at Bloorview. Of course the orthopaedic surgeon is on holidays (until September 23rd I might add), but we were able to meet with Dr Church. I never have a problem seeing her. SHE.IS.FABULOUS.
So the treatment right now is to try and get the wound to heal. I'm not sure if you have ever tried to bandage a toddler who still wears diapers and poos constantly that has an open wound 3cm from where his poo comes out (sorry TMI)...but it is not an easy task. I feel I have the bandaging down pat, it's the keeping the poo out that becomes the problem. We were hooked up with our local community care and they sent me some supplies (Bloorview had sent me home with about a day and a half worth) Upon receiving my supplies they gave me 2 bandages...TWO. So after 3 hours I was out lol. And we can only order more supplies when the nurse comes...the nurse that was supposed to come between 6.30 and 7 (so no problem I'll miss Carter's ball game) and then doesn't show up until after 8 (no problem I'll just keep my 18 month old awake an extra hour so you can assess him). And she told me she would put a rush on more supplies for today (it is 8.30 and nothing has arrived) I have been gone most of the day so I was not able to make any calls to see where they might now I have nothing.
Sorry for the rambling and the story could be longer, but I'm just tired of having to do so much calling. Trying to get a walker to borrow/rent...none available. And that's phoning 4 different places to see and then wait for a call back. I'm tired that the only outing I end up doing with my boys is visiting Dr's offices, because on the days we don't have an appointment, I can't muster up any energy to go anywhere.
And trust me, I know I have it easy, that's why I hesitated for so long to ever write any of this. Perspective is a wonderful thing. But somehow I just can't shake this feeling.
If an acquantance met me and asked how life was, I could honestly say I love my life, my family. But there is a cloud that just is not allowing the sun through right now. I have a strong faith, I have a wonderful support system...and seriously have you seen my boys (well maybe not as I have not been posting a whole lot of pictures) but let me tell ya they are some cute. So I am hoping this jumbled up post will help move those clouds away and show me the sun I know is obviously behind.


  1. Sometimes you just need to vent! I had a "I hate SB" temper tantrum not too long ago myself and I just let it all out on my blog. Nothing wrong with being honest. I hope things get worked out soon with the supplies you need.

  2. Oh honey - you don't have it "easy". Yes perspective is a wonderful reminder of our blessings - but that doesn't mean we have it easy or that we can't have grey times in our lives. What you're going through is tough. :( Any time our little ones are hurting or uncomfortable - anytime we are trying to make their lives better/healthier/easier - anytime we find ourselves without the answers/help/direction we so diligently are seeking - it is not easy. We feel so responsible for things that are out of our control - and worried about things we can't seem to fix. But that is natural. You are allowed to feel that way!! And don't beat yourself up or feel like you can't share those feelings just because you know it could be worse. It sure as heck could be better too! lol. We are here for you. We understand. We've been there in some form or fashion and we've felt like the "downers" - but the truth is - life has ups and downs. I'm sorry you are going through a down-time. And while we know it won't last forever - it's still tough. I will keep you and your cutie-pie in my prayers. That's one of the biggest blessings about sharing our fears/struggles/sadness is that there are friends out there who will pray for us - validate our feelings - and tell us we are not alone. You are NOT alone. Even with a wonderful support system and adorable family - sometimes us SB momma's can feel alone. I know I can. So I want you to know that many of us have been "blue" over different things recently - and I think by getting on and blogging-it-out you did the smart thing. I hope you feel better soon and little Zach can heal and get the treatment he needs. Much love!

  3. I know the feeling. It stinks.

  4. You aren't a downer we all have times when it seems like too much!! I'm prayi g for some unexpected good news for you!

  5. Oh Stefanie,
    I'm sorry you are having such a tough time! I know sometimes it feels like nothing will go right. I hope things start working out really soon.
    If you are having problems with the nurse not arriving on time, try contacting the agency. I don't know what kind of supplies you need, but I have some stuff left over from Nick's surgery.
    About the walker - I'm not sure what you are looking for, but I saw a Nemo? walker on kijiji. There is also a site called Zach's list ( about exchange/buying using equipment.

  6. I'm a month late in responding, but I'm sending big hugs anyway. I often feel the same way, like I'm a huge downer and don't want to keep whining about things... but it's good to let it out! We all totally understand. I hope he's doing well and healing up and this all worked out.