We went for a walk to get some fresh air and I grabbed the camera.
Cardio thoracic Post Op Appointment
10 years ago
Wednesday, October 21, 2009
Tuesday, October 20, 2009
SCARE!!
What a week it has been. After the news we got about Monique's heart on Wednesday. She woke up with a headache and a sore belly Thursday early morning. I thought it was nothing... i was wrong. Later that morning, she had a fever of 103.2, throwing up, pale, lethargic... not well. I brought her to the doctor and she ended up in the hospital until Sunday afternoon. She had a bad strep throat infection which made her super sick.
If I never have to hold her down for needles or tests ever again I will be the happiest woman alive. However, I know that is not possible. This is still the beginning of her journey. I hate it when those brown eyes are staring up at me while she is screaming NO! and I am holding her down so she can be poked again and again... there is no comfort that comes in that feeling.
What kind of mom am I ? I was in the bath reading Sunday night after Monique was in bed and I came upon this quote. I thought it very fitting for the situation I was in and the feelings I have been having about this whole never ending nightmare, it is as a part of me dies every time Monique needs another procedure
Let me tell you what you feel when you know you are ready to die.
You sleep a lot, and when you wake up the very first thought in your head is that you wish you could go back to bed.
You go entire days without eating because food is a commodity that keeps you here.
You read the same page a hundred times.
You rewind your life like a videocasette and see things that make you weep, things that make you pause, but nothing that makes you want to play it forward. You forget to comb your hair, to shower, to dress.
And then one day, you make the decision that you have enough energy left in you to do this one, last, monumental thing, there comes a peace. Suddenly you are counting moments like you haven't for months. Suddenly you have a secret that makes you smile, that makes people say you look wonderful, although you feel like a shell - brittle and capable of cracking into a thousand pieces.
(...)
In short, I have been there. I, of all people, should understand wanting to give up, when the ache is too great. But instead I feel myself fighting furiously, grasping at straws to keep succeeding, where i once failed.
I watch Monique as she grows. IT IS NOT FAIR! She is 6, there is no place where a 6 year old should have to endure things such as these. Why can't she be a normal kid. Run and play. No worries. No medicine. A world where she does not have to grow up before her time. I want to her to a child. It is evident that this is impossible. There is wisdom beyond her years behind those deep brown eyes. Believe me, if there was absolutely anything I could do to help her, I would.
WHY?! When will it end? Will there ever be an end? How much can we endure? Where is my cracking point? Where is hers?
People often say that I am strong. Yes, I am because I have to be. But even the strongest thing sometimes cannot endure any more weight. The weight of the world is heavy. I am not sure sometimes how much more I can take. In the quiet of the night, I silently break into millions of pieces. Far from where anyone can see. Further from Monique, who, needs me to be strong for her. If Mom is afraid, if Mom is crying, what kind of peace will that give Monique ?
So I will keep, under the cover of night, my pieces in a box, so I can find them when I need them, once all the tears that can fall have fallen.
If I never have to hold her down for needles or tests ever again I will be the happiest woman alive. However, I know that is not possible. This is still the beginning of her journey. I hate it when those brown eyes are staring up at me while she is screaming NO! and I am holding her down so she can be poked again and again... there is no comfort that comes in that feeling.
What kind of mom am I ? I was in the bath reading Sunday night after Monique was in bed and I came upon this quote. I thought it very fitting for the situation I was in and the feelings I have been having about this whole never ending nightmare, it is as a part of me dies every time Monique needs another procedure
Let me tell you what you feel when you know you are ready to die.
You sleep a lot, and when you wake up the very first thought in your head is that you wish you could go back to bed.
You go entire days without eating because food is a commodity that keeps you here.
You read the same page a hundred times.
You rewind your life like a videocasette and see things that make you weep, things that make you pause, but nothing that makes you want to play it forward. You forget to comb your hair, to shower, to dress.
And then one day, you make the decision that you have enough energy left in you to do this one, last, monumental thing, there comes a peace. Suddenly you are counting moments like you haven't for months. Suddenly you have a secret that makes you smile, that makes people say you look wonderful, although you feel like a shell - brittle and capable of cracking into a thousand pieces.
(...)
In short, I have been there. I, of all people, should understand wanting to give up, when the ache is too great. But instead I feel myself fighting furiously, grasping at straws to keep succeeding, where i once failed.
I watch Monique as she grows. IT IS NOT FAIR! She is 6, there is no place where a 6 year old should have to endure things such as these. Why can't she be a normal kid. Run and play. No worries. No medicine. A world where she does not have to grow up before her time. I want to her to a child. It is evident that this is impossible. There is wisdom beyond her years behind those deep brown eyes. Believe me, if there was absolutely anything I could do to help her, I would.
WHY?! When will it end? Will there ever be an end? How much can we endure? Where is my cracking point? Where is hers?
People often say that I am strong. Yes, I am because I have to be. But even the strongest thing sometimes cannot endure any more weight. The weight of the world is heavy. I am not sure sometimes how much more I can take. In the quiet of the night, I silently break into millions of pieces. Far from where anyone can see. Further from Monique, who, needs me to be strong for her. If Mom is afraid, if Mom is crying, what kind of peace will that give Monique ?
So I will keep, under the cover of night, my pieces in a box, so I can find them when I need them, once all the tears that can fall have fallen.
Wednesday, October 14, 2009
Not good news...
We went up for a check-up today. God, I was not expecting to hear what I heard. I feel like I am sceaming at the top of my lungs and someone is suffocating me with a pillow. I feel so completely helpless.
Monique is not well. Her cardiologist did not like what he saw at all. She is now on meds to help lessen the load on her heart. Her aortic valve is not working at all. It never worked well. But now, it's worse. The "good" side of her heart will have to be repaired. What I thought would be the #1 concern is not the case. It is something completely different. So now, it is a real waiting game, how bad, how fast?? Surgeons will have to go in and replace her aortic valve with a donor one (which would only last about 5 years) or a mechanical one (which would mean blood thinners for the rest of her life). Though choice!
One minute I am numb, the next I feel like screaming and then crying my eyes out. No matter how prepared you think you are for bad news it is a huge slap on the face. And it hurts like a BITCH!
Please, keep Monique in your prayers. Pray that she pulls through what is coming safely and successfully.
God Bless.
Monique is not well. Her cardiologist did not like what he saw at all. She is now on meds to help lessen the load on her heart. Her aortic valve is not working at all. It never worked well. But now, it's worse. The "good" side of her heart will have to be repaired. What I thought would be the #1 concern is not the case. It is something completely different. So now, it is a real waiting game, how bad, how fast?? Surgeons will have to go in and replace her aortic valve with a donor one (which would only last about 5 years) or a mechanical one (which would mean blood thinners for the rest of her life). Though choice!
One minute I am numb, the next I feel like screaming and then crying my eyes out. No matter how prepared you think you are for bad news it is a huge slap on the face. And it hurts like a BITCH!
Please, keep Monique in your prayers. Pray that she pulls through what is coming safely and successfully.
God Bless.
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