Tuesday, September 05, 2006

Hard night that stabilized

Hi Everyone,

I was going to title this note "Hard night that got better" but then it occurred to me that the word "better" was so far from appropriate. Right now I guess "better" for us is stable, meaning no active crisis taking place in this moment. Grace was in a coma (I have to still get used to this word... I'm finding that I'm saying "sleeping" instead, and she is far from sleeping) for the balance of the afternoon and early evening yesterday. Ian and I were feeling comfortable telling my parents to leave and get some rest, June (Ian's mom) was here for the night and we just wanted to lye and talk to Grace. It's so odd, now when I write her name, I almost feel it appropriate to put it in quotations like "Grace". Is that terrible?? I don't know... maybe this is too honest but she is so far from the Grace we have enjoyed over the last 2 1/2 years yet still so cherished ... it's truly so hard to comprehend so even more difficult to explain. Ian and I began the routine we do every 3-4 hours: rolling her limp body from one side to the other to avoid bed sores, wiping the inside and outside of her mouth and putting Vaseline on her lips, saline soaking her eyes to remove the residue that makes her lids stick together, applying drops to her eyes, moisturizing her nostrils with saline soaked Q tips (the oxygen makes them dry), wiping her face and neck as well as creaming what feels dry. Did you notice I did not include a diaper change? Grace is no longer urinating or having bowel movements. When we rolled her from her left to right side her breathing became distressed and she began wheezing for air. Ian and I placed her back to her left side but the fluid in her lungs had been disturbed and this return to her previous position was not fixing it. Ian began suctioning her without success. We turned her oxygen on high and called for Junes assistance (she's a retired nurse). I began to panic, maybe our decision to keep Grace home was a mistake, maybe we should be in hospital. I know that to make this decision we had done our research. We spoke to other parents who's children had died and they had recommended being at home for as long as we could handle... to the end if possible. We had visited a hoists to see if this would be more comfortable for Grace. We had discussed in detail with the palliative care team whether Grace's care would be at all compromised by not being in a medical facility and we were insured that it would not be compromised and that her quality of time would definitely be enhanced by being at home. But in this moment of her gasping for air, I questioned what I had strongly felt was a sound decision. After placing a panicked call to my parents asking them to return, June, Ian and I began frantically suctioning, repositioning and administering morphine hourly until Grace began breathing comfortably again at 12:45am. Over two hours of distress. Truly uncomprehendable. Ian and June stayed up for the night, rolling Grace, administering morphine every 4 hours and monitoring her breathing. My parents stayed and I tried to find rest lying beside my baby instinctively jumping up every few hours to check on her condition. I don't know if many of you have read the book "Tuesday with Morrie" but if you have not I would highly recommend it. It tells the story of the last year or so of a man's life who is dying from a degenerative disease as documented through interviews that took place every Tuesday. There are a few lines in this book that will stick with you forever. One being "you must learn how to dye before you can truly live". I think this is why cancer survivors usually say cancer was one of the best things that ever happened to them. It teaches them how to live, truly putting in perspective what is important. I know we all say it, like I remember saying it when I had Grace... "now I know what is truly important", but now through Graces suffering I truly live it. Maybe this is just me, maybe others are able to reach this epiphany without enduring such tragedy, all I'm saying is that Grace has saved me. Saved me from self absorption, over indulgence, truly has made me acknowledge the difference between "needs" and "wants". Our needs are truly such a miniscule amount of what we posses. I'm not saying I'm moving to a third world country to live in a hut. I'm just saying that I remember being convinced that Ian and I "needed" a 4 bedroom home to expand our family from 3 to 4. I remember thinking if we could afford it 5 bedrooms this would be even more ideal, one for each of our planned 2 children, our room, an office and a spare room. Now thinking about this is mind boggling to me. I just didn't have a clue. I thank my sweet baby for saving me, teaching me how to truly live, laugh and love. She remains in a comfortable coma. May she continue to find peace.

Les

P.S. I keep hearing that so many people now follow this blog. Initially Alex created it for me so I would not have to individually contact the dozen or so close family and friends on Grace's condition. Truly just as a time saver. I am complimented that so many of you faithfully read this blog out of sincere concern for Grace and our family. Your prayers have given us strength throughout this horrific process. However, sometimes I question whether the honesty I write with is beyond that which I should share with the many who now follow. Hopefully not. Should it bother me that so many know that I can't sleep without being medicated? Maybe. Or would it be more concerning if I could sleep without being medicated while living this nightmare? Probably. I'm just gonna keep writing. L~

14 Comments:

Blogger Lindsey said...

Stay strong Les. And keep writing. Keep those happy memories close to you.
I just recently read Tuesdays with Morrie and agree with you wholeheartedly.
Linds

3:12 p.m.  
Blogger Cathy Marostica said...

Lesley,
Keep writing.
Don't ever let it take away from precious time with your Grace, but know that there is truly a wide community of people out here who gain perspective, strength and hope from reading your entries. I think of you and of Grace often. I'll be in the midst of a conversation with someone, having a good time and suddenly remember you and wonder how Grace is...is she surviving? Is she breathing? It seems unfair that any child should have to go through this and equally unfair that any parent should live this nightmare. It is even more unfair to see the world go on and not stop at a complete standstill to mourn the loss of this baby... Know that even though the whole world can't stop to wonder where Grace is in her journey, there are many, many, many people who are thinking of her and praying for her - people who's worlds have indeed stopped. Wishing you much luck, love and light, Cathy Marostica

3:13 p.m.  
Blogger dee said...

Lesley, I am one of those readers you don't know. I did have the pleasure of being in a class or two with Grace and you at Gymboree though. I just wanted to encourage you and let you know that I pray for Grace and for you and Ian a few tmes a day. I think you are an amazing mother and I hurt so much for you. We don't know each other but I read and I pray because I genuinley care for your family and Grace as fellow human beings. There is no judgement here and never will be. Only care for you. I'm sure there are numerous people that feel the same as me reading right now. I hope you draw strength from this, I don't know what else to say, I will just keep praying for Grace and you and Ian, and your families.
Dee

3:56 p.m.  
Blogger Bowens said...

Lesley,

I truly believe that by sharing your story with so many, that you are inspiring and giving each of us strength. I also believe that this is a part of healing for you. To write your feelings down, no matter how honest you are, it provides you with a format to release your fears and anguish from the day. I know that after lossing my Dad to cancer, writing my feelings down seemed to make the healing process a little bit easier to bear. Keep writing Lesley but only when your heart allows you! Be strong and much love to your little angel. Angela Bowen

4:06 p.m.  
Blogger Nicole said...

Lesley,
I am also one of those readers you don't know. I met you and Grace briefly a couple of years ago when you were visiting your friend Leslie and Grace was only a couple of weeks old. I have been following your blog and admire the strength that you and Ian have. Your love is inspiring and I think of you, Ian and Grace throughout each day and night. You and your family are in our (my family's) thoughts and prayers. Please keep writing and don't feel as though anyone is passing any kind of judgement. It is so unfair that Grace and you and Ian as parents for that matter have to go through this pain. Stay strong and know that many of us are praying for all of you. As a parent myself my heart aches for you and your family.
Nicole

4:42 p.m.  
Blogger Nicole said...

Lesley,
I am also one of those readers you don't know. I met you and Grace briefly a couple of years ago when you were visiting your friend Leslie and Grace was only a couple of weeks old. I have been following your blog and admire the strength that you and Ian have. Your love is inspiring and I think of you, Ian and Grace throughout each day and night. You and your family are in our (my family's) thoughts and prayers. Please keep writing and don't feel as though anyone is passing any kind of judgement. It is so unfair that Grace and you and Ian as parents for that matter have to go through this pain. Stay strong and know that many of us are praying for all of you. As a parent myself my heart aches for you and your family.
Nicole

4:45 p.m.  
Blogger Parker said...

Lesley,

I have finally found your blog and am up to date with what you and your family have been continuing to go through. I know that there is nothing I can say that could ever diminish the pain and hurt you are experiencing. Please know that our family thinks and prays for all of you daily. You are constantly in my thoughts and I wish that there was something that I could do to make things better for you. I always enjoyed our talks at Sick Kids and think the world of you and Ian. You are such strong people and it is that strength that will get you through this extremely difficult time.

Much love,
Tracy DesLauriers

I will keep checking in regularly now that I have your blog.

6:57 p.m.  
Blogger Paula Mazerolle said...

Lesley

As a mom to a mom, my heart aches for you. I read your comments daily, sometimes on multiple occassions for more updates on Grace's condition.

Who are we, to pass judgement on you and Ian??? We all can admitt that we never want to feel the pain and heartache you are feeling.

I continue to pray for Grace's comfort, and for you and Ian's strength.

My thoughts are with you and your family,

Paula

8:03 p.m.  
Blogger angela said...

Hi Les, I am also one of those "readers". I log in almost each day to see how you and Ian, little Grace and your family are doing. I also stop often thru the day and think about where you are and what you are doing as I stress out over traffic or some other "small" item. They are all "small" things. Your words bring alot to me and I thank you. I too have read Tuesdays With Morrie and I loved it. Take care Les.

9:18 p.m.  
Blogger Heather said...

Dear Lesley,

I too am someone that you do not know; I have been following your Blog for the past few months. As a Mother my heart is truly aching for the pain that you and Ian are enduring. My thoughts and prayers are with you and your Sweet Baby Grace every day. There are many moments in the day that you cross my mind. Thank you so much for continuing to write , it is impossible not to become emotionally involved, and as difficult as it is to read, your strength is truly inspiring and the concern is very genuine. Grace's little life has been lived with such purpose; your little girl is giving so much back to this world in so many ways. Not only has she Grace saved you Lesley; there has been an incredible rippling effect on so many others, in ways that you can't imagine.

My thoughts and prayers continue to be with you all.

10:07 p.m.  
Blogger Mary Flynn said...

Lesley, I am also another "unknown" faithful reader (friend of Gymboree) who prays for you and finds true strength and inspiration from you.
We continue to send our love, strength, prayers and we light candles for Grace at every church that we happen upon.
As a mother, my heart aches and breaks for you.
I know it must be extremely difficult (understatement) to keep faith, but you are an incredible individual - know that and believe it!
We do wish there was something we could do for you
Much love to you, prayers, hugs and strength as you continue on this journey....
M

10:16 p.m.  
Blogger Kerry Goring said...

Leslie,

I too am one of those people who have never met you or your family, but by reading this blog; you have touched my world and created a legacy for your child that is truly inspirational.

Your candid thoughts,open-ended dreams and realistic portrayal of you and your family's daily struggle have made this experience real for those of us who do stop in to check up on little Grace, and also on you and Ian. It is truly a gift that you give to us despite your own rocky journey.

While we can only glimpse in on the anguish that you are going through, please know that our empathy is genuine. We are interested in knowing about Grace, because your candor has made her all our concern. I see her journey as a celebration of life, and you as an inspiration to motherhood.

I pray for you daily, and wish you comfort in this overwhelming time.

12:38 a.m.  
Blogger Denise Williams said...

Lesley & Ian,
Like many others, I check this blog every time you and Grace cross my mind, which is now many times a day. As has been expressed so many times by so many people, you are an inspiration to us all in the strength you have exhibited during this unfathomable experience. When I think about the sadness I feel when I read about Grace, and the fact that it is only a fraction of what the two of you are experiencing, I am amazed again at the strength you possess.

My thoughts and prayers are with you, Grace and both your families.

10:08 a.m.  
Blogger Maureen Flynn said...

Dear Lesley and Ian,
I am also an unkown reader who was directed to your blog from a friend of yours.
It is extremely well written and honest.
I have just heard from them that your "Little Grace" is now at peace.
That is an oxyg moron. Grace's peace is your continued heartache.
May you somehow find the strenght to get through this.
I will continue to prayer for you and your families. Maureen

1:25 p.m.  

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