Despite the medical issues with the kids, the last few months have been amazing considering they've had no hospitalizations in the last 8 months. Things have been looking up since the kids have started taking CoQ10 everyday before bed along with other medications. It has been especially awesome for Ocean because he is now able to play hockey and thoroughly enjoy it without being tired after 5 mins of exercises.
Our last wellness checkup 10 days ago didn't play out like the last 8 months contrarily. Ocean hasn't gained any weight in the last 6 months and we've started noticing that his food intake has gradually gone down to one or two bites at meal times and complains that he's full. The specialist suggested that we do a gastroscopy to eliminate possible problems in his esophagus and stomach before we move forward with appetite stimulating medications.
And thus, Tuesday he goes in for the procedure. Problem is, Ocean can't fast. So on top of the gastroscopy on Tuesday, he needs to be admitted the day before to receive infusions overnight to make sure he doesn't have hypoglycemia the next day. So Monday it is.
It's not so much of the procedure or the admitting that bothers me (of course it makes me sad that my kids have to go through things like this at such a young age, but it is what it is...), but it's the emotions and flash backs that this will generate. The fear and uncertainties we went through a few years ago when this journey first started. The anxiety, sadness, stress ect... All of this and I have to keep a brave face for my son who is petrified to go through another anesthesia and procedure. That's the hardest part, keeping it together for your child when all I want to do is cry and tell him that I'm scared as well. One day he will understand, but his innocent eyes can't see the fear and anxiety that it brings me. How when they put him under on Tuesday, I will be reminded of his little body writhing and moving in awkward motions when he was 2 and a half the first time he went under for his MRI. How I will fall asleep to the hums of the machines that night and remember all the times I was woken in the night by an alarm going off on the pumps.
We have come a long way and I will be strong yet again. For him, for me, for my family. When his eyes open on Tuesday afternoon after his anesthesia wears off, I will smile and love him that much more and the sun will rise on Wednesday morning just as it always has. I will cease to worry and that metaphorical brick will be lifted. I will breath again.
Sunday, November 22, 2015
Monday, May 18, 2015
Breaking point
So many thing I want to say but don't know where to start...
We have reached our breaking point. So many months of pretending that everything is ok and manageable but in reality, it's not. I find myself daydreaming lately of a time that was perfect and carefree, where we had all the time in the world to appreciate our family and do so many fun things together. A time where the beauty of the day was just that, the sun shinning and joy surrounding our little life. Don't get me wrong, we still enjoy beautiful days but they seem more distant than they used to be.
Our lives have been filled with doctors and specialist appointments (not counting hospital visits for mundane things gone rogue), hubby traveling non stop and me trying to make ends meet. Summer is coming and I long for life to be normal. Hubby keeps saying that what we are going through is "normal" but I don't feel that. I am always waiting for the other shoe to drop and it drops WAY too often for my liking. It also conveniently drops when hubby is away on business leaving me to fend for my own. We have an amazing family and medical support but friends are far and few between. Part of the problem, I am sure, is that we have pushed away a lot of friends in fear of always having nothing positive to say or relate to. And for that I am so sorry.
Friends from school, college, no one really knows the extend of what we live. Why? because at some point, I gave up trying to explain this crazy world we live in. Rare disease? Mito what? Hospital, oh no? The reality is that most people don't know how to respond and that's ok. I think I speak on behalf of everyone in the rare disease community when I say that; we don't need you to respond or say anything really, we just want a listening ear and someone to talk to. Sure there are things we don't like hearing like: "Oh I am so sorry" (I am not! I love my children and this is the life I was given, I am not sorry) "You never know, they may grow out of it" (I get that you are trying to cheer me up, but the reality is that this is not something you "grow" out of) "Wow, you are so strong. How do you do it?" (I am by no means strong. And how do I do it? I don't. I survive and every mother would do the same regardless if you are "strong" or not).
We have pushed away so many people, not by choice but out of pure survival. Friends from school and college, our once "so called" second family (FD), childhood friends. You know who you are... I apologize. I am sorry I wasn't there when your second child was born. I am sorry I didn't even come to visit you in the hospital when your baby was born prematurely. I am sorry I never went to your birthday dinner. I am sorry for not being there when you relapsed into depression again. I am sorry I didn't visit you when I drove down to the town I used to live in. I am sorry I lost touch with you when you moved away. I have missed so much.
I've realized that I can't do this on my own anymore. Pride used to cloud my judgement on outside help. I think pride left out the window and took a hike down to Florida with the rest of the Snowbirds.
Things will eventually slow down (I hope) and life will take on a more "normal" appearance. But for that to happen I have to accept the help I am given even if it means swallowing down my pride. It hurts to know that I, myself alone, cannot provide everything for my kids. I will eventually get over it. It has taken 3 years to finally throw up my white flag and accept it. It doesn't make me any less of a mother or any less of a person. It means that I finally recognize that this life we live is not "normal" and never will be, but damn, let's make it a happy one.
If anyone wants to read up on what Mitochondrial Complex 3 Defiecincy is and help spread awareness please visit:
MitoCanada
MitoAction
Mitochondrial Complex III Deficiency
We have reached our breaking point. So many months of pretending that everything is ok and manageable but in reality, it's not. I find myself daydreaming lately of a time that was perfect and carefree, where we had all the time in the world to appreciate our family and do so many fun things together. A time where the beauty of the day was just that, the sun shinning and joy surrounding our little life. Don't get me wrong, we still enjoy beautiful days but they seem more distant than they used to be.
Our lives have been filled with doctors and specialist appointments (not counting hospital visits for mundane things gone rogue), hubby traveling non stop and me trying to make ends meet. Summer is coming and I long for life to be normal. Hubby keeps saying that what we are going through is "normal" but I don't feel that. I am always waiting for the other shoe to drop and it drops WAY too often for my liking. It also conveniently drops when hubby is away on business leaving me to fend for my own. We have an amazing family and medical support but friends are far and few between. Part of the problem, I am sure, is that we have pushed away a lot of friends in fear of always having nothing positive to say or relate to. And for that I am so sorry.
Friends from school, college, no one really knows the extend of what we live. Why? because at some point, I gave up trying to explain this crazy world we live in. Rare disease? Mito what? Hospital, oh no? The reality is that most people don't know how to respond and that's ok. I think I speak on behalf of everyone in the rare disease community when I say that; we don't need you to respond or say anything really, we just want a listening ear and someone to talk to. Sure there are things we don't like hearing like: "Oh I am so sorry" (I am not! I love my children and this is the life I was given, I am not sorry) "You never know, they may grow out of it" (I get that you are trying to cheer me up, but the reality is that this is not something you "grow" out of) "Wow, you are so strong. How do you do it?" (I am by no means strong. And how do I do it? I don't. I survive and every mother would do the same regardless if you are "strong" or not).
We have pushed away so many people, not by choice but out of pure survival. Friends from school and college, our once "so called" second family (FD), childhood friends. You know who you are... I apologize. I am sorry I wasn't there when your second child was born. I am sorry I didn't even come to visit you in the hospital when your baby was born prematurely. I am sorry I never went to your birthday dinner. I am sorry for not being there when you relapsed into depression again. I am sorry I didn't visit you when I drove down to the town I used to live in. I am sorry I lost touch with you when you moved away. I have missed so much.
I've realized that I can't do this on my own anymore. Pride used to cloud my judgement on outside help. I think pride left out the window and took a hike down to Florida with the rest of the Snowbirds.
Things will eventually slow down (I hope) and life will take on a more "normal" appearance. But for that to happen I have to accept the help I am given even if it means swallowing down my pride. It hurts to know that I, myself alone, cannot provide everything for my kids. I will eventually get over it. It has taken 3 years to finally throw up my white flag and accept it. It doesn't make me any less of a mother or any less of a person. It means that I finally recognize that this life we live is not "normal" and never will be, but damn, let's make it a happy one.
If anyone wants to read up on what Mitochondrial Complex 3 Defiecincy is and help spread awareness please visit:
MitoCanada
MitoAction
Mitochondrial Complex III Deficiency
Subscribe to:
Posts (Atom)