The day we have all been dreading has arrived - we said our final goodbye to Gracie at 8:38pm one year ago.
I got to spend some time with Katie this weekend and she was able to share with me some of her grief and what she thinks and feels. It is heart breaking to watch and hear her pain and all I can do is keep encouraging her talk about it. I now know and understand that keeping it all inside your head only allows the wounds to seep and burn but never heal.
Don't get me wrong - I don't think you get over losing your child - I think you come to accept it even though you don't want to and it is the hardest thing for someone to accept. It is not right or normal to have to learn to accept a loss such as this. There is no timeline - today is not a magic wand that takes it all away and life suddenly turns back to "normal". Acceptance means you live with it everyday, for the rest of your life and yet not allow it to rule your life - at least that is my definition, the best I can articulate at this time.
Today I wanted to honor my granddaughter's life and be with my daughter to give her support and love. We spoke of a few things we could do, and I promised myself that however the day went was the way it was supposed to be.
Signs... Some may believe in them and some may not - I know we attach meaning to things every day. However the approach of this day has brought many "signs" for me....
1. I have a pink rose bush that is 7 years old and blooms every year at this time - about a 1 week ago I noticed there was one branch that was growing wildly - like a climbing rose and I picked it up and wound it around a trellis - it bloomed a deep crimson red - a different kind of rose then the bush I planted. I keep looking to see where it grew from and it comes from inside the original rose bush - 1 long vine. The regular rose bush bloomed it's first rose and it is a beautiful pink rose - it is not cross pollination.
2. I put a basket of flowers in the corner of my house along with an angel statue I got from a neighbor and a statue (plaque) with wind chimes by the flowers. I then also have 2 wind catchers (like pin wheels) by the flowers... The first 5 days, I would come home and the Plaque had fallen over and I kept putting in a different position and the next day it would tipped over. On Saturday I laughing said to Katie, as I was resetting the plaque yet once again, I said Gracie keeps kicking this over and we giggled. The next day I went out and the pin wheel was all laying down fully apart on the lawn (another one was untouched) The plague was not tipped over. I came in the house and said you won't believe what happened now - and Katie asked if it was tipped over and I said no. Katie said good because I yelled at her and told her stop doing that. I said well the pin wheel was all torn apart and on the lawn - just like a kid???
Whatever your beliefs - I choose to believe she was letting us know she was near and OK - After Katie left - nothing more has happened.,
3. This morning I walked in to the Bank and there was an elderly person behind me.... The teller called out... Hi Grace - how are you doing today? I just smiled.
Today - I watched the DVD that was made by the photographer the hospital called that night. They took pictures until Katie asked them to stop before Gracie was taken off support. The DVD is put to incredible moving music and I again cried and cried.... I am still amazed because through all of it - you can SEE love in those pictures. It was the most loving, precious, amazing, heart wrenching - time in my life - so hard to put in to words.
Today - Katie and I along with Wayne spent the day together - She wanted to stay at home and try to forget the day, and I was afraid she would back out - but she didn't. We got balloons and wrote our messages on them and released them to the sky, outside the Children's zoo. We had a picnic at a park w/Wayne and then took him to the zoo after the balloon release. Katie wasn't sure she could take being around the kids - but all went well and Wayne enjoyed it immensely. He got a balloon to keep for himself.
I thought is was great way to honor Gracie - we spent it together, with her brother, we sent her our love and messages and we took her w/us in our hearts and minds to places an 18 month child would have loved. I have asked Katie that we create this day as a day we take her someplace special with us every year and Katie has agreed. It will be a special day for us and we will honor her life and the gift it was to us even if only for a short time.
As for may daughter - whose pain I can not erase, I found this poem for her and I hope it helps a little.......
Letter to Mom
Author: Joy Curnutt
Mom please don't feel guilty
It was my time to go.
I see you are still feeling sad
And the tears just seem to flow.
We all come to earth for our lifetime
And for some it is not many years.
I don't want you to keep crying,
You are shedding so many tears.
I haven't really left you,
Even though it may seem so.
I have just gone to my heavenly home
And I am closer to you then you know.
Just believe that when you say my name
I am standing next to you.
I know you long to see me,
But there is nothing I can do.
But I'll still send you messages
And hope you understand.
That when your time comes to "cross over"
I'll be there to take your hand.
I thought I would blog today about her last day and all that happened and hows she was - but just like the day - it happened like it was supposed to and so this blog flowed from me, like it needed to.
Gracie - We will always love you - "Always & forever" and we will take you with us in hearts and thoughts for the rest of our lives. Keep sending us signs!!
Love, Grammie
Monday, June 7, 2010
Wednesday, June 2, 2010
Is there a Reason this happened?
Recently there were a few more anti-depressant drugs listed as causing pulmonary hypertension in babies - there is a class action law suit. One of these drugs was prescribed by the OB to Katie, who took it for 1 month and then stopped it. Now they say she didn't take it soon enough - she took it in her 3rd. month.
I don't know that I believe that, as there is no history or reason for this to have been caused. I know many birth defects happen w/out history or specific cause -but this is just too coincidental - I believe it. Katie asked Gracie's U of M DR and received the statement that he couldn't say whether it was or was not. What I do know is - if he thought it was not or could not be caused by this drug - he would have said it. So he may not know for sure or at all - but he definitely couldn't say it was not.
I know my daughter is struggling with this - feels like no one cares about her daughter's life and once again, I can't make her pain go away. I also know that even if this drug caused it - it is a hollow victory because it wont change where we are at today - Gracie is gone - almost a year now and we miss her everyday and nothing or no one else can change that cold, hard fact.
It would give us peace of mind of course if we knew it were true and knew it wasn't hereditary. The only silver lining in this whole ordeal.
So I guess the lesson is to always question your doctors decisions and really challenge them if what they prescribe or give you, is the right decision for you.
I am struggling as I approach the 1 year mark - I have seen where some mom's call it the "angelversary". Which is better then anniversary which is associated with good things. It seems like a lifetime ago and at the same time it feels like yesterday. Driving to work I realized that for as much as I have been reliving it all this past year - I had not thought much about the last week of her life - it was very stressful as she was having so many episodes. I remember walking in and they had all the needles lined up on the bed right beside her and a pacemaker taped to the middle of her chest for quick access. She would just DSAT so quickly and was having a hard time coming out of them, they had to give "epee-spritzers" as they called them, she was having a hard time w/her temperature, lung collapsing and infection was beginning. They tried turning her and they put in tubes in her side, but she couldn't handle being turned and the tubes were only another source of infection to hide out it.
Things were so stressful for Katie and Michael. We had one doctor (who we didn't care for) who was pushing for Katie to sign a DNR form - the doctor talked to me and wanted ME to understand how ill Gracie was and to convince my daughter how ill she was. He implied that she was probably brain dead or damaged - but that wasn't the case as the brain scan proved. He wanted us to stop treatment - but we weren't ready - He really had no idea how difficult it is for a parent to make that decision. It may have made perfect medical logic - but there is no logic when a parent is faced with this type of decision. Nothing about losing a child is logical. Other doctors were more supportive, they told us the odds were extremely slim that she could recover, but they also said that we should not lose hope. And so a few more days came and went - it was good day when she only had 2 or 3 episodes.... but it was really a never a good day for Gracie. Although you could feel the time was soon - you still hoped something, anything would happen to STOP what was happening. I fully understood how you become so willing to do anything to save her - you will accept anything if it will give her 1 more day or hour - everything you have inside is willing this child to live and yet deep down you know you are fighting a losing battle... but you know for this moment it isn't lost yet. It is amazing what our hearts and minds do during these times - you think and say things that you can't even believe it is coming from you. You pray for a miracle and feel guilty because all the children there needed one too.
Hard to believe almost a year and life continued for everyone - even though a part of us died with her. Sometimes I wish I would dream about her, so I could see her again and hold her again - even if it is only a dream - I would love see her again without the tubes and hold her close to me.
Fly high with all the Angels Gracie - You are not forgotten, You are loved everyday!!
I don't know that I believe that, as there is no history or reason for this to have been caused. I know many birth defects happen w/out history or specific cause -but this is just too coincidental - I believe it. Katie asked Gracie's U of M DR and received the statement that he couldn't say whether it was or was not. What I do know is - if he thought it was not or could not be caused by this drug - he would have said it. So he may not know for sure or at all - but he definitely couldn't say it was not.
I know my daughter is struggling with this - feels like no one cares about her daughter's life and once again, I can't make her pain go away. I also know that even if this drug caused it - it is a hollow victory because it wont change where we are at today - Gracie is gone - almost a year now and we miss her everyday and nothing or no one else can change that cold, hard fact.
It would give us peace of mind of course if we knew it were true and knew it wasn't hereditary. The only silver lining in this whole ordeal.
So I guess the lesson is to always question your doctors decisions and really challenge them if what they prescribe or give you, is the right decision for you.
I am struggling as I approach the 1 year mark - I have seen where some mom's call it the "angelversary". Which is better then anniversary which is associated with good things. It seems like a lifetime ago and at the same time it feels like yesterday. Driving to work I realized that for as much as I have been reliving it all this past year - I had not thought much about the last week of her life - it was very stressful as she was having so many episodes. I remember walking in and they had all the needles lined up on the bed right beside her and a pacemaker taped to the middle of her chest for quick access. She would just DSAT so quickly and was having a hard time coming out of them, they had to give "epee-spritzers" as they called them, she was having a hard time w/her temperature, lung collapsing and infection was beginning. They tried turning her and they put in tubes in her side, but she couldn't handle being turned and the tubes were only another source of infection to hide out it.
Things were so stressful for Katie and Michael. We had one doctor (who we didn't care for) who was pushing for Katie to sign a DNR form - the doctor talked to me and wanted ME to understand how ill Gracie was and to convince my daughter how ill she was. He implied that she was probably brain dead or damaged - but that wasn't the case as the brain scan proved. He wanted us to stop treatment - but we weren't ready - He really had no idea how difficult it is for a parent to make that decision. It may have made perfect medical logic - but there is no logic when a parent is faced with this type of decision. Nothing about losing a child is logical. Other doctors were more supportive, they told us the odds were extremely slim that she could recover, but they also said that we should not lose hope. And so a few more days came and went - it was good day when she only had 2 or 3 episodes.... but it was really a never a good day for Gracie. Although you could feel the time was soon - you still hoped something, anything would happen to STOP what was happening. I fully understood how you become so willing to do anything to save her - you will accept anything if it will give her 1 more day or hour - everything you have inside is willing this child to live and yet deep down you know you are fighting a losing battle... but you know for this moment it isn't lost yet. It is amazing what our hearts and minds do during these times - you think and say things that you can't even believe it is coming from you. You pray for a miracle and feel guilty because all the children there needed one too.
Hard to believe almost a year and life continued for everyone - even though a part of us died with her. Sometimes I wish I would dream about her, so I could see her again and hold her again - even if it is only a dream - I would love see her again without the tubes and hold her close to me.
Fly high with all the Angels Gracie - You are not forgotten, You are loved everyday!!
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