Worst case scenario mom here - Planning the week ahead!
What could possible go wrong? Well, should I begin?
No, I don't think I will, I'll wait and see what the week holds for me.
Tomorrow is treatment day at the hospital and oh, am I NOT looking forward to it.
At which point is it too much? What level does his meltdown have to be before I say no more?
I've already mentioned the hospital, the treatment and a special treat.
I think that I'll take him to see the giant Christmas tree tomorrow.
Funny how no one really warns you all the emotions you will have when you have kids.
Do parents of kids with no disabilities feel as I do?
I'm still luckier than others. I get to take my son home after his treatment and when you look at other kids at the hospital, you realize how lucky you really are.
What do you think?
Sunday, November 18, 2012
Thursday, November 15, 2012
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!
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!
Sunday, September 30, 2012
The worst case scenario mom?
That's me - the worst case scenario mom.
I'm down who's on the escalator going down, concerned that my baby will fall out of my arms and tumble the the stairs.
I'm the one who drives on a bridge and clenches the steering wheel for fear that the bridge will give out under me. Of course, living in Montreal, who can blame me for that one!
And, I'm the one who visualizes all sorts of terrible things as I leave my son at school for the day.
I worry that kids will pick on him, I worry that no one will play with him, I worry that he won't have enough food for the day, I worry that he'll get hurt, I worry that's he'll miss. I worry! I'm worst case scenario mom.
I don't know if the worry came with the Hemophilia, or I would have been like this without the bleeding disorder. He's my first born so it's hard to say how I would have been had he been born without it.
'IT' sucks, 'IT' overtakes my life, consumes me and pretty much defines me. I don't want it to, I tell myself everyday that Gabriel is not the disease, this is his how his body works and we have to deal with it.
I never say that he's a Hemophiliac but rather that he has Hemophilia. He's not the disease after all, he just has the misfortune of having it.
I'm constantly in fear of him hurting himself and guess what? He's always hurting himself. He's five and just started kindergarden. He had a spontaneous joint bleed last week.
I was shocked, I never expected him to have a spontaneous bleed. I always assumed that Hemophilia A's had the spontaneous bleeds. Never assume anything, right?
He's getting a port on Thursday. My baby is having surgery, a foreign object will be put in his little body.
We've been working with him to help him deal with the surgery. Hopefully, he'll be ok on the day.
Again, worst case scenario mom in me comes out and thinks the worst!
I guess I have to stop myself and take it one day at a time.
So, tomorrow when I drop him off at school, I won't worry about the potential bully in the making who may or may not be suffering from ADHD, I won't worry about Gabriel making a mess while eating and just covering his white shirt with tomato sauce (White? Seriously? What were they thinking when they imposed the dress code? We need to buy stocks in clorox bleach)
I will definitely NOT worry about any psycho killers entering his school. My husband thinks I'm a little coucou..but I digress...I'm just the worst case scenario mom!
I'm down who's on the escalator going down, concerned that my baby will fall out of my arms and tumble the the stairs.
I'm the one who drives on a bridge and clenches the steering wheel for fear that the bridge will give out under me. Of course, living in Montreal, who can blame me for that one!
And, I'm the one who visualizes all sorts of terrible things as I leave my son at school for the day.
I worry that kids will pick on him, I worry that no one will play with him, I worry that he won't have enough food for the day, I worry that he'll get hurt, I worry that's he'll miss. I worry! I'm worst case scenario mom.
I don't know if the worry came with the Hemophilia, or I would have been like this without the bleeding disorder. He's my first born so it's hard to say how I would have been had he been born without it.
'IT' sucks, 'IT' overtakes my life, consumes me and pretty much defines me. I don't want it to, I tell myself everyday that Gabriel is not the disease, this is his how his body works and we have to deal with it.
I never say that he's a Hemophiliac but rather that he has Hemophilia. He's not the disease after all, he just has the misfortune of having it.
I'm constantly in fear of him hurting himself and guess what? He's always hurting himself. He's five and just started kindergarden. He had a spontaneous joint bleed last week.
I was shocked, I never expected him to have a spontaneous bleed. I always assumed that Hemophilia A's had the spontaneous bleeds. Never assume anything, right?
He's getting a port on Thursday. My baby is having surgery, a foreign object will be put in his little body.
We've been working with him to help him deal with the surgery. Hopefully, he'll be ok on the day.
Again, worst case scenario mom in me comes out and thinks the worst!
I guess I have to stop myself and take it one day at a time.
So, tomorrow when I drop him off at school, I won't worry about the potential bully in the making who may or may not be suffering from ADHD, I won't worry about Gabriel making a mess while eating and just covering his white shirt with tomato sauce (White? Seriously? What were they thinking when they imposed the dress code? We need to buy stocks in clorox bleach)
I will definitely NOT worry about any psycho killers entering his school. My husband thinks I'm a little coucou..but I digress...I'm just the worst case scenario mom!
Sunday, April 22, 2012
It's been a while...
It's been a while...
2 years to be exact.
Much has happened over the last 2 years.
I fell pregnant, I lost the baby. I was 18 weeks pregnant. It was tragic, traumatic and put me over the edge. Well, I was already over the edge, it just nudged me some more.
A few months later, I fell pregnant again. 9 months later, little Naomi Marie entered our lives.
She is a pure joy. An Angel, An adorable sweet baby who smile all the time.
She's so much different than her brothers. For one, she actually sleeps. It's so perplexing to me. She gets tired, I put her in her crib and she falls asleep. Peculiar in this household!
She was born in September, on the 12th at 12:49AM. I actually went into labour on the 11th but delayed going to the hospital so that she could be born on the 12th. I'm weird, I know, but I just didn't want her birthday to be September 11th.
She came into the world and changed mine.
Within a week of bringing her home, our routine was back to the same. Chauffeuring the kids to school, daycare, the pediatrician and of course the hospital for Gabriel.
Bringing your 3rd baby home is wonderful, but your life doesn't stop.
It continues with a new little person to care for.
2 years to be exact.
Much has happened over the last 2 years.
I fell pregnant, I lost the baby. I was 18 weeks pregnant. It was tragic, traumatic and put me over the edge. Well, I was already over the edge, it just nudged me some more.
A few months later, I fell pregnant again. 9 months later, little Naomi Marie entered our lives.
She is a pure joy. An Angel, An adorable sweet baby who smile all the time.
She's so much different than her brothers. For one, she actually sleeps. It's so perplexing to me. She gets tired, I put her in her crib and she falls asleep. Peculiar in this household!
She was born in September, on the 12th at 12:49AM. I actually went into labour on the 11th but delayed going to the hospital so that she could be born on the 12th. I'm weird, I know, but I just didn't want her birthday to be September 11th.
She came into the world and changed mine.
Within a week of bringing her home, our routine was back to the same. Chauffeuring the kids to school, daycare, the pediatrician and of course the hospital for Gabriel.
Bringing your 3rd baby home is wonderful, but your life doesn't stop.
It continues with a new little person to care for.
Saturday, April 3, 2010
Cuts, bumps and bleeds..
Just when you think you can sit back and relax a little, your little one face plants, falls off a chair, cuts himself or in my case does all 3 in 1 day!
I spent my life watching my mom fret over my brother without it ever really affecting me. She would infuse him in front of me, help ice his bruises, yell at him when he would hurt himself carelessly, and yet, I would go on with my day to day not bothered by it much.
Now, I have my own children, myself a mother to a child with Hemophilia and I a total and utter mess! Each time Gabriel falls, I panic, each time he has a bruise, I pick up the phone and, with dread, I call the hospital to know if I should bring him in or not.
9 times out of 10, I pack him and off we go to the hospital. He cries the whole way there, he cries the whole time at the hospital and he stops crying when he gets his chocolate milk/ice cream/toy car - whatever I can get for him quick enough to stop the crying.
When I first started bebeccino, my quest was to find the best safety items out there for Gabriel. I wanted to buy everything I could get my hands on to not only protect him but to also show other moms that these products were available.
I bought him a helmet, the Thudguard that he would wear as we wheeled him around on the vacuum cleaner. He would wear his knee pads when playing on my mom's deck. I bought him the cutest Nemo and Cars ice packs to make the bumps a little less painful.
I realized some time ago that the products were not only for him, but also for me. To make myself feel better.
They are great products and they work well but at the end of the day, you cannot put your child in a bubble. He is going to get hurt no matter what you do. You need to know and accept that as hard as it may be.
Being the parent of a child with a bleeding disorder is without the doubt a truly difficult thing. It's not a disorder that can be seen right away, it's not a mental handicap and it's not one that people know much about. You are constantly having to explain to others what it is exactly. But all that is ok, it's great, because the more you talk about it the more people start to understand it. The more you say Hemophilia, the less foreign and scary it sounds. The more you discuss it with your family, your friends and your co-workers, the more you will see that you are a strong parent helping yourself and your child overcome a disorder.
A Psychologist once told me that I had to look at it like this - this is how his body works and we have to work with it.
It sounded so simple and it's taken me a year to fully understand it and use it as my philosophy.
I am a proud mother to 2 wonderful boys, one with Hemophilia and one without. My challenge now is to figure out how to treat them both the same.
Do I put the Thudguard on the little one too? I think I will.
I write this blog to help me rationalize my thoughts and to also let other moms and dads out there know that if they are struggling with a child that has a disorder, they are not the only ones.
Bebeccino.com was created to help people find safety products. I hope that you will spread the word about this blog and the website.
Tomorrow is Easter and Sunday, and I pray that there will not be any falls, bumps or bleeds during the egg hunt!
Happy Easter to all...
Wednesday, February 24, 2010
Au revoir Adiri...
Adiri is no more!
Bebeccino will no longer stock this great and innovative baby bottle. The manufacturer went out of business a little while ago!
Like you, I am perplexed as to what happened. I first discovered Adiri in Los Angeles, in a great store called The Right Start.
At the time, Gabriel was 10 months old and I was trying to get him to take a bottle.
I loved the look and Gabriel took to it right away. When I decided to launch bebeccino, Adiri was the first product I purchased. It was a great seller from the beginning. I was overjoyed. It gave me that extra push that I needed to expand the products I had and get into bebeccino full time. As full time as I could be with a child that has a bleeding disorder.
No matter what, I could always rely on Adiri. We sold stock after stock and I never thought that we would stop selling it. Until one day, I got an email from the manufacturer saying they were ceasing production on the bottles and that they would close.
Within a day they were gone, a terrible victim of the US financial fiasco that is happening at the moment.
We sold our last few bottles this week and it was sad to box up my last bottle and ship it off.
I would like to thank all the wonderful clients that bought the bottles and that supported bebeccino over the last year and a half.
I am grateful to you all for helping me as I continue to work from home and support my son.
So, I say Au revoir to Adiri and a BIG thank you to you all for all the continuous encouragement that you give when you read my blog and surf bebeccino.
HOWEVER, I say a BIG bonjour to all our other great products, such as Think Baby bottles, Organic Kidz stainless steel baby bottles, Born Free and other wonderful sippy cups.
Check them out when you have a chance, you will not be disappointed.
Enjoy!
Wednesday, February 10, 2010
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…
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.
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
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.
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