What the f&*% have I done!

The problem with being a worst case scenario mom, is that well, you are always anticipating the worst.

When things go terribly wrong, you know that they will go even worse.  And that's exactly what happened today.
Just when I though that my son could not have a more gruelling, troubling, angering, traumatic treatment session, he did!
I think that today he had the mother of all meltdowns and all I could do was sit there silently as I watched him lose his mind, tears streaming down his face as he yelled: "I'm not ready for this", "I hate being poked"and my favourite "I don't like Hemophilia"
Forget the arrow piercing the heart, it was like a hook wrenching it out of me!
There's no worse experience than seeing your child suffer.
There's no worse feeling than that of guilt over your child suffering.
Of course, I blame myself.  I cannot help but feel this incredible amount of guilt at seeing him suffer.
He's only 5, should he be going through all this?
I have silently decided that I cannot go on like this.  I will not treat him until he is ready.
Will he be ready?  He's 5, I am going to say no.

There are many blogs out there dealing with parenting, with coping and with Hemophilia.
I've read a lot of them and they give me some insight into what other parents feel.  I know that I am not alone (Of course, few out there have the same kind of neurosis as me)

However, I am rarely left comforted by their blogs.  When I go through what I went through today with my son, my husband and the nurses, I feel there is no nice way out of this.
I think to myself :"What have I done?"
It really is difficult being the parent of a child with a disorder.  It is really troubling for a parent to know that your child has many uphill battles to deal with.  To feel like you contributed to these causes is truly the worst thing in the world.
There is no 'nice' experience when it comes to being poked with needles.  It isn't fun, pleasant or joyful.  It has to be done, how do you explain that to a 5 year old?
I am completely exhausted and spent.  My energy level is low and this is from watching him have a melt down, not actually treating him.

His mood now, some hours later, is higher due to some apple juice and a hot dog.  Will he be happy tomorrow?  No, he'll be whiny and angry.
I am mentally preparing for his mood, after all, I am the worst case scenario mom!

things learned over the last couple of years...

I have an audience! I would like to thank my audience of one for supporting me and not being porn spam!
It made me happy to know that there is actually someone out there reading what I have to say! So, again, my heartfelt thanks!
Whether you have kids with disabilities or not, you still go through the regular hustle and bustle of having a family.
The disability is a just a little added bonus to enhance your already action filled life!
In this blog, you’ll see what I have learned over the last couple of years as a mom and as a mom of a child with a bleeding disorder!
Here goes…

• It now takes me an hour and a half to get out of the house and that does not include me brushing my hair or my teeth!!

• Not everyone takes pleasure out of seeing all 500 pictures of your children…damn those digital cameras!

• Dishes and laundry don’t do themselves.

• Apparently if your husband is holding the baby, he is unable to do anything else, because he is holding the baby and THAT is doing something! I, on the other hand, can, make dinner, pay bills, fold laundry, pack the diaper bag AND hold the baby…but I digress..

• If something smells funny around you, it’s probably you because you haven’t showered in days!

• Going to the bathroom is now referred to as ‘making poopies’

• Most people babyproof their homes by adding locks to their cupboards and cover their outlets, I, on the other hand, being the mom of a child with a bleeding disorder, get rid of my coffee tables, pad most of my floors, drill all my furniture into the walls and put bumper pads on the remaining furniture.

• You now take a shower with the curtain open and sing kiddie songs to your screaming kids as you soak up the bathroom floor

• Going to the pharmacy to pick up diapers and other baby items is considered an evening out

• As soon as the baby starts to crawl, I put knee pads and a helmet on him. Is that going overboard?

• Your husband can never pack the diaper bag properly

• While other children play with rubber duckies in the tub, my kids play use syringes as squirt guns to desensitize them to needles

• No matter how well you baby proof the house, your baby will always find something dangerous to play with!

• Getting 4 hours of sleep in a row makes you feel refreshed and alive!

• Guilt and fear become your greatest emotions

• Your house seems to always look like a tornado hit it

• Complete strangers don’t have a problem asking personal questions especially about breastfeeding!

• Making dinner takes a minimum of 2 hours to make as you have to stop every 2 minutes to either yell at your child, get your child out from the cupboard/under the table/closet or nurse a bump!

• You have lost all people skills and now talk to everyone in a baby’s voice

• You’re known as Gabriel and Robert’s mommy and you introduce yourself as such!

• You wonder how many times you can watch Finding Nemo before you are put off fish forever

• You spend more time than you would like at the hospital due to your son’s hemophilia

• Your child’s favorite words are ‘No’ and ‘Mine’

• You now have to deal with kicking, biting, screaming and tantrums, usually done in public places

• You’ve lost your sanity somewhere between the time the first one was born and when he started eating solids

• You realize that you are always doing laundry!

• Quality time with your husband is paying bills together, folding laundry together and falling asleep early

• Christmas gifts in my household (again with the bleeding disorders!) include medical kits and band aids!

• My freezer overflows with a variety of ice packs for my son’s bumps and bruises

• You can’t remember your life before them and can’t imagine your life without them

I would not be where I am today, had Gabriel not been diagnosed with Hemophilia.
As I sit here writing, Gabriel is giving his plush monkey a treatment. According to my son, the monkey hurt himself and needs to be treated. The toy medical kit is out, the syringe is out and the band aids are out. I am smiling to myself and well, maybe the thing I learned the most over the last couple of years is that in the eyes of a child, even a treatment can be made into a game.