Surgery

I heard from Monique's cardiologist yesterday morning. Monique's surgery is booked for early January and she is on the cancellation list in the mean time to try and get her in a little earlier.

She will have to suffer another month. Every morning, she wakes up and the first thing I hear is ... Mom, I don't feel good. When she gets home from school I hear... Mom, I have a headache. Monique is not one to complain when she is sick. She is a complete trooper so I know that when she does say something she usually really means it.

So we have to sit and wait... hopefully she won't get any more symptomatic then she is.

sitting by the phone...

I am sitting by the phone wondering when it will ring. I have a huge lump in my throat and a hole in my stomach. Monique will need surgery earlier then we thought. With her decreased activity tolerance, her headaches and her general "not feeling well" her cardiologist has decided that it is time to intervene.
As I sit here and write this blog surgeons are discussing my beautiful baby. They are discussing what should be done and when it should be done. Monique's cardiologist told us it could be as soon as next week.
I am walking around in circles. It takes everything not to cry. My heart stops every time the phone rings. I say hello and wait for a voice.
I pray that everything will be ok. There will be no complications. I will bring Monique home after surgery better than ever. Energetic, full of life, ready to run.
I cannot think of anything else. I cannot imagine anything else. I cannot dream of anything else. I cannot drink anything else. I cannot eat anything else. All that I am right now is Monique.
I am Monique and her heart.
I am sitting, with my whole heart, by the phone... waiting for it to ring.



... so the phone didn't ring... but I got an email. Monique's surgeon is not available until next week. I will not know more until he gets back.
I am afraid... I am afraid that the longer Monique has to wait... the more headaches she will have to endure, the less activity she will be able to participate in, the more she will suffer. I WANT IT DONE NOW! It is not fair to make her wait and suffer!
Her cardiologists assure me that she is stable. She is stable, yes, ok. But she does not feel well. Does that account for anything? Why chance her being unstable by waiting?

So , I will sit... and wait... and be the best mom I can be. I will be there when she needs me and I will back away when she feels she needs space. I will hold her tiny hand in mine and look into her deep chocolate eyes, and simply be there.

I will sit and wait and hold her hand, until she is considered sick enough to actually do something about her condition.

So sit every once in a while, and pray with me, pray for me, pray for her...

Monique today

We went for a walk to get some fresh air and I grabbed the camera.

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.

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 6 !!

Monique's first year in school os over. She is learning to read and to write. She is getting so big and I am amazed every day by her strength. We are now enjoying her first official summer vacation of many to come. It hasn't been very nice outside but we are trying hard to find things to do. And if all else fails there is always day camp.

Monique turned 6 on July 15 2009. Today we are August 5th, 6 years ago today I held her for the first time after her surgery. My little miracle! Now she had a lose tooth and is excited for the tooth fairy. Being a child is so magical, I think in ways we, as adults can't even remember.

This year, we will be attending the Heart Talk for the first time. She will play with children who have scars like hers. I am curious to see how she will react. If at all... nothing really phases her much.

Just a note to let you all now that all is well. Heart hugs to you all!!

Faith

May 2009

Hello again... it's been a while. We have been busy I guess. Monique's last cardiology appointment went well if you have been wondering. Her cardiologist said she was stable but was worried because of her complaints and her few episodes of having to sit out of an activity because her heart "hurt". I am waiting for a phone call. An MRI of her heart or a cardio cath may be in order to find out what is really going on. I also asked him how many Truncus cases there are in NS. he told me they see about 1 new one a year - not necessarily the same type as Monique. He also told me they treat Truncus much like Tetralogy of Fallot which I didn't know. Nice to know I guess.

Summer is coming. We all can't wait. Lots on the agenda. Monique has started another season of soccer. I am not sure if it will be any better then the last. It is late - from 6:30 to 7:30, and bedtime is 7 on a school night. We will see... by 7 she is ready to go home.

I am cutting sugar out of her diet as much as I can again to see if it will make a difference in her activity level and tolerance. She did well before but I guess we have gotten slack... so i guess it is our fault that she has been a little difficult. Funny how sugar and certain foods affect some kids so differently than others. We will see... hopefully we will get her all buckled down again and able to concentrate and listen a little better.

We got 2 kittens 3 weeks ago, Edward (the girls call her Egwart - they can't pronounce Edward, it is too cute!) and Bella. The kids love them to death. Edward is a little ham, outgoing as can be and has no fear while Bella is timid and affraid of everything, she growls at everything too! Hopefully she will settle in ok.

thanks for reading! ...