Sunday, April 28, 2013

Dear Stranger

Dear Stranger,

My friend told me what you said the other day while sitting at the park. In her dear attempt to try and relate to the heartbreak we feel somedays, she shared what you had to say:  "Why do they keep her alive?" and "what about her other healthy kids?".

You know, I know people judge and make comments about people like our daughter Gabrielle, but a part of me thought that there was no way people could really think those thoughts strongly enough to voice them. But you, wonderful stranger, have shown me that, yes, there are people out there who are so ignorant that they are simply incapable of empathizing with different and difficult situations.

I'm wondering about your comment about us choosing to "keep her alive"?  I'm actually very curious about this.  What do you think parents of special needs and very sick children have the option to do? Do you recommend a pillow over her face? I know Gabrielle was transplanted, but they didn't transplant her with a 'die' switch. "Ok Gabrielle, time's up, goodbye!"

I feel sad that you have a heart that has never experienced the kind of joy and pain that we get to experience.  I strongly encourage you to open your heart and embrace all people on this earth! Yes, Gabrielle may look different from the outside, but she's human and she feels, thinks, and is - in many ways - just like you or I.  We don't all come in perfect little packages. Gabrielle has taught us a very important lesson that people like you may never learn: it's what's inside that counts.

I wonder if you would continue to think these thoughts if you volunteered once a week at a children's hospice for just a year. If you learned to laugh and love with these sickly kids as much as we do. To watch them die. To watch them prepare for death. My guess is that you wouldn't do this. My guess is that you would be too afraid of the unknown to even consider it. If I am wrong, email me one year from now.

Your other comment about their "other healthy boys" was also interesting.  Yes, our life is different.  We don't have many luxuries that most people in our community have.  We cannot travel with our daughter. We really can't leave our home at all. Day to day living is challenging.  We rely on our nurses. We need help from family and friends. We have come to rely on a children's hospice to catch our breath and momentarily recover so we can function in a healthy way.

Our lives are not like yours because of Gabrielle's challenges. But not only am I keenly aware of just how much we do have, I'm also aware of how enriched our lives have become since she came into our lives. But, most people don't realize that. Most people wouldn't realize how much our healthy boys are learning and benefiting from having her as a sister. Most people choose to complain about what they don't have. Some people, like you, judge from afar.  Not my boys and not this family.  We have learned to embrace life.

Of course no parent wants their child to suffer, to experience pain, and live a life like the one Gabrielle has been given. Of course I want her to be healthy. Of course a part of me hopes she will pass if her body causes her too much pain. If I could trade places with my daughter I would in a heartbeat. Unfortunately, that's not the reality. Reality is reality. Reality is that I cannot change my daughter's illness.  I cannot cure her.  All I can do is love her and be the best parent I can be.

'Dragon Mom' Amy

Saturday, April 27, 2013

Empathy & Patience

Mickey wanted to mow the lawn with me. Jimmy wanted to practice soccer with me. But they knew it was Gabby time, while Mom and Jonny caught up on sleep, and lay down beside her for well over an hour and entertained her with ga ga's and boo's! and kisses and tickles.

The empathy and patience Gabrielle is teaching them at such a young age is remarkable. Amy and I are having to unlearn and let go of previously held beliefs and expectations. For them, it's all they know.

Monday, April 22, 2013

Jimmy's Family Video

This winter we got into a bad habit of letting our boys watch LOTS of tv.  There are some days where we are just so flat out exhausted, that putting on a movie and curling up on the couch has quickly become the family habit.  Our oldest son James could literally watch tv all day long if we let him so in an attempt to move James away from the tv Regan taught him how to make his own movies.  Early this morning before school, James was busy choosing pictures and movies and importing them into I-movie (Regan helped him with the movies but James chose his own song and all his own pictures). Here is his first movie...

Friday, April 19, 2013

Happy 2 1/2 year birthday Gabrielle!

April 13th, 2013
a happy, busy 2 1/2 year old girl

A snapshot of you at this time:

We went and saw your opthamolgist at BCCH and you are in need of your first pair of glasses.  Since our last appointment your eyes have gotten significantly worse and you are working very hard to focus so that you can see properly.  Your cousin Anna really wants to come and help you pick out a pair of glasses and she even agreed to wear her own pair so that you don't feel bad about it.  I think you are going to look way too stinkin' cute with your new shades on!  I just hope you don't try and rip them off everytime we put them on you.  The doctor wants you to wear them all day long!

You had your first trial run in a walker and we were so proud of you.  You were very nervous about the whole sensation of walking and I think it scared you a little bit.  By the end of the session, you managed to smile and I know once you get used to it you will love the freedom of roaming around the house.  Our biggest challenge with you at this time is providing stimulating, social experiences and because you have no mobility in your life you get very frustrated.  I can hardly blame you sweet girl.

Tomorrow we go and see your neurologist and I'm hoping that they'll take you off of your seizure medication.  You've had no signs of any seizures since your hospitalization in January, and deep down I know that you don't need it.  It would be nice to slowly get you off most of your meds.

The flu has gone through myself and the boys this past week and so far we have managed to keep you, Dad and Jonathan healthy!  I hope you don't catch this nasty stomach bug that has left me, James and Michael throwing up and feeling so weak.  I've been doing my best to quarantine the boys downstairs but it is impossible to keep them away from you.

(I wrote this last week and since I've written this update, you have gotten sick.  We've had some stressful nights helping you with your breathing.  A reminder once again, at how quickly things can change.  You seem to be on the mend but it always pains me to watch you struggle).

Morning walk with your little 'twin' brother.

Wednesday, April 17, 2013

Breath easy baby girl
My anxiety is through the roof whenever you struggle to breath
I pulled you out of bed and sang you your favourite songs and when I hooked you back up to your sat monitor, you seemed a little more relaxed.
Smiling and singing and cuddling
If I could heal you with my love, you would have been healed one million times over.
Breath easy baby girl
I love you.