Monday, September 28, 2009

Hugs from Gracie Lou

I have ordered labels to put on the blankets I made for CHD week. It was because of her that I even came in contact with this issue and the people who are doing this. This past weekend we took my daughter and grandson to see my sister in the "hos-sta-ball" and I kept telling him that he was going to see Aunt Jan and he was happy to going to see her. On the way in, he said Gracie is here? His mom said no, she is in heaven and he said, NO she is at the hostaball and he was insistent up on it. My daughter looked worried and sad at the same time. I just turned to him and said Gracie is not at this hostaball and he was OK with that. Even kids have a hard time with it and I know he really has nothing to relate to heaven. All he knows is that is sister went to the hostaball and has never come home.

Thursday, September 24, 2009

I miss her...

I miss her so very much and I know my daughter does too. What I wouldn't give to hold her again and see my daughter hold her again.

When I see my daughter so sad - I seem to go in to a tail spin too - not in front of her of course but for days afterwards - oh I can hide it at work and even at home while people are around but it is there underneath everything - heavy and sad.

My daughter and her son want to come to my house this weekend, I need to get myself together before tomorrow night.

Gracie remember... I Love you Forever and Always!!

Tuesday, September 22, 2009

My Daughter's pain

Today my daughter called in tears because her son had dumped bleach on his clothes and well we all know what bleach does to colored clothes. She has been really trying to get her life together - going back to school, being a single parent to her son and dealing with losing her daughter too. She is working on keeping things going and trying to do more positive things.

Today put her over the edge and as we all know, it wasn't the incident that put her over the edge, it everything that she is keeping inside. She isn't sleeping well, she doesn't eat much or all that healthy and she is having headaches. Feels like there no way out. Some might say she is wallowing in self-pity, but that is not it. She is trying to handle it all on her own.

She has always dealt with things by getting angry and striking back or just burying it inside and pretending, at least to herself, that it didn't matter. Although none of it has been a great way to deal with things, it is how she has done it and doesn't know any other way. I have tried repeatedly to talk to her about a counseling and she doesn't want to talk about it, because she thinks she is past it and doesn't want to bring it up again - she just can't see that she will not be able to deal with like she always has.

Today I heard some of her anguish and the guilt that she still carries inside and I couldn't do anything to help her. I listen and talk and hold her but nothing helps. I wish she would go to counseling and I know some part of her thinks of it - but she also knows that it won't bring Gracie back, there is nothing that will stop the pain. And - she is right - it will still hurt and Gracie will still be gone. My heart just breaks to see her like this and at times I am afraid of what she will become some day if she doesn't learn to work through this.

She feels that because she signed the papers to stop the support, and she held her daughter and watched her turn blue before she took her last breath that she gave up on her and caused her death. She did sign the papers, but we were told she wouldn't recover - some doctors said, "don't lose hope", but they also said that it would take more then a miracle. Gracie's little heart was failing and they had been rescuing for weeks, but her little body was giving out and I knew that day when I walked in to see her that she looked different and I said so the nurse.

The nurse said, she is letting go now and her body is under so much stress, her blood sugars were now in the high 200's and they were giving her insulin to try to regulate it. This of course was in addition to the other 19 IV's she had going.

That day - her eye lids were partially open and wouldn't close. Her eye hadn't been open since the day she was baptized and only you could see they were more cloudy looking from all the medicines, pain meds, BP meds, paralytics and on and on and on. She kept having tears coming down her little cheek and I asked the nurse if they were her own tears, (indication of pain) but she said No, I put drops in this morning. Somehow that still didn't seem to explain it because they had been doing that for 3 weeks and we never had to wipe away tears from her. The tears just kept coming about 1 or 2 every 30 minutes and I wiped them away. Her color was different and she looked more lifeless then alive. It is very hard to explain it.

The hospital had already spoken to us many times about a DNR form and that we needed to think about it and how much we wanted them to rescue her and to what degree. One Doctor was adamant about it and we were very angry. It was weighing heavily on my daughter and Gracie's dad - they took a long to think about it, so many tears were shed - how does a parent make that kind of choice? Why does any parent have to make that choice?

But that day I know she could see it to and knowing that her body was under even more stress and they were maximizing all the current drugs and still she was not able to maintain. Her infection was not going away, in fact it was starting to worsen again, she was getting air pockets in her chest and chest tubes couldn't always relieve them. Her lungs were mostly collapsed and she was on very high vent pressure. Her heart wall was very thick from trying to pump against her lung pressure and it couldn't rest and had enlarged more. What else was there to do but to make her passing as peaceful as possible.

She can't forget holding her daughter and seeing her turn blue and go - she wanted to put the tube back, but it was over. She feels like she gave up on her and I understand fully why and how she feels that - but it is not true!!

How do I, her mother, help with that? As a mother you always want to help your child, no matter how old and to see her like this - in so much pain and distraught and not feel like you can make any difference, has been unbearably painful at times. I know she has to get through this but I don't know how to stand by and help and when I attempt to help, I don't know that what I am doing is helpful.

I pray, but I also understand that prayers don't always get answered the way we want them to be.

Wednesday, September 16, 2009

Roller coaster continues

I am not sure how I feel today.

One of the people I work with today told me she went to church this past weekend, she normally does not go. She said they sang Amazing Grace, which was sung at Gracie's service. She said it is such a beautiful song and that all she could think of was beautiful Gracie and she cried all the way through it. She said I don't mean to upset you, but I just wanted to tell you this little baby had an impact on me. It amazed even her. I smiled and tears filled my eyes because it has been one of my fears or anxiety that her life would be forgotten and not mean anything - like she was never here. I am sure that impact will lessen for her over the years - but I am clear that she will remember her when ever she hears that song and she will think of our beautiful Gracie. It really made me smile and made my day.

Then I got a call that my sister who is 18 years older was taken to the hospital and having chest pains and now transferred to another hospital and having a heart catherization tomorrow. I quickly went in to my take of everyone else mood, her daughter, call my other sister who was very upset by it. I am very concerned and worried and yet somehow detached in a way I can't describe - almost like it can't get me. Actually I am afraid of losing her, I always have been afraid of losing my siblings - being the youngest of 7 siblings whose ages rage from 46 to 78, I have always been aware that I could lose all of them. I have already lost 1 brother 21 years ago to cancer. I know I can't make my sisters illness about me - she is the one who is not well, but I selfishly pray the she is OK for her and I also know that I can't take this right now - it is taking all I have to keep it together at times, I don't know how much I can give right now. That was embarrassing to even write - Boy am I a nice sister or what ?

Tuesday, September 15, 2009

Message to me

As I stated in previous message - I sometimes get mad because I don't feel like I can really say how I feel or how I am doing when people ask.

Well I went to Church on Sunday, I had to lector so I had been practicing my readings all week and the first reading is about being strong and following Jesus even if persecuted because of him and that God is always there through it all - he does not forsake us. The second reading speaks of how you can have faith but if you don't have works behind the faith then it is nothing - it is dead. Faith is demonstrated by works.

So as the sermon begins the Priest speaks of how everyone has crosses to bear and some are heavier then others and they change as we go through life; some crosses seem unbearable at times but he is always there even when we think he isn't. He goes on to talk about if we are Christians and we live and act like Christians then we need to look out for our neighbors and reach out to them when they have heavy crosses to bare.

I am obviously not stating every bit of it but as I sat there and listed I felt bad for getting angry at people for asking me how I am and how my daughter is doing - they were reaching out and reaching out the best they knew how to... I was the one who was rejecting it and no being very christian. It felt like my personal message so I will remember that whether I can tell people how am really doing or not - they are still reaching out to me and depending on the person, I need to let them too - something I am not very good at.

The week prior when I went to Church they were baptizing 3 babies... I just keep thinking that I have to learn to deal with this and something bigger then me keeps showing me that - whether I like it or not, it is just a part of our life.

Today I was sent a picture of a friend with his 4 grand kids and one of them was born about 10 days before Gracie. I looked at him (a beautiful little boy) and even though it is a boy and not a girl I couldn't help but think about her and think wow, she would be this big and be sitting up, rolling over and trying to crawl or crawling - it was like for a moment I could fill in the gaps from
when I last saw her - part of it made me smile and then of course I could feel the hole inside and the familiar ache.

Some days I seem to be able to see babies and think all things I just said and it is fine and other times it just throws me in to a tailspin. I have an extremely difficult time being around baby clothes and toys in stores, it is almost a slap in the face. I can see that my daughter reacts very similarly - she looks away and pretends it is not there and doesn't want to be in those parts of the store.

I remember last year after she was born, my step-daughter said next year for Christmas we will have 4, 3, 2 and 1 year old grand kids and we all talked about how much fun it would be and how crazy opening gifts would be and how many toys Papa would have to open and put together. (I go a little overboard for Christmas) I even said OK no more grand kids for awhile, since my daughters had been alternating years having children. I didn't mean I wanted less. Why is it you always think about stupid, silly conversations you had when things like this happen. I do notice it though when I am looking through catalogs for Christmas gifts, when I get to the infant section - I just stop and it just feels wrong that I can't just keep going, but I can't.

Saturday, September 12, 2009

Another Day


Here she is in ICU @ U of M - Hard to believe she was so sick.
Today I passed a store and saw a little outfit that would have made me turn around and go in and get it for her. When things like that happen it does make me smile but then it always makes me sad too.
I am amazed that even when I think I am doing so good, that underneath it is all still there. In just an instant tears can be falling and I don't seem to have any control over it, many times it takes me by surprise because I really didn't think I was feeling that emotional.
I went to our church festival and looked around today and one of the women came up to me and asked how we were all doing and of course I said, "we're doing fine, hanging in there". Then they ask about how my daughter is doing and I say, " she is doing pretty good - still trying to learn to cope with all of it". I of course smile - I don't know what else to tell them. Do they really want to to know how it is, because it sucks and my heart aches at times. I can't tell them all that so I just pretend. Sometimes I get angry that I have to pretend - I have to pretend at work - pretend whenever I am in public someplace - pretend when I talk with people on the phone. Of course most of it is me - I don't want to a basket case for others and most are just being polite. I do understand it - it is what I have always done and will probably continue to do - of course you ask people how they are doing, because you want to know you care and are thinking of them. I just never realized that in certain situations - it can be hard on the people you are asking. It is a catch 22 situation any - if people don't ask - you get angry too.. Of course most people have quit asking now since it has been 3 months.
One of the Mom's who lost her son the end of June has been very busy doing many charity things. One of them is collecting blankets for CHD week in February - they want to collect 300 blankets. I purchased 3 today and made 12 - they did turn out cute. They are for patients of all ages - most are babies and toddlers. I am looking for a label I can sew in that would say something like "hugs from Gracie" but I can't seem to find them. I think I may type up a prayer and simply say hugs from Gracie and tie it to the blankets.
We got a special blanket and prayer shawl when were in the hospital and it was very nice. It has been had to make blankets specifically for little girls - I have made more generic right now. This picture has one of the blankets I made for Gracie... she loved bright colors and my daughter thinks she preferred purple - so the back of this blanket is purple.
I have prayed that I could dream of her at night - but I haven't and it makes me angry - like can't I just get to see her in my dreams once in awhile, is that so much to ask for? Don't know how I don't dream of her, she is obviously on my mind when I go to sleep - but now that I think about it - I haven't dreamed of much since she died. Don't know why that is, I usually remember my dreams and I always dreamt a lot. It may be that by the time I fall asleep - I am in too deep of a sleep?

Thursday, September 10, 2009

A new day

Today was a better day. I am not sure why some days are so much darker then others. As I have stated before - it never goes away but sometimes I seem to be able to handle it better. I know when I am really tired, I am more emotional - but even when that is not a factor the days and my ability to handle the loss changes.

Sometimes I can look at her pictures and smile and remember all the good times and other times the same pictures just make me want to cry and the pain in my chest seems overwhelming. I don't seem to be able to control it - each day is just what it is.

One of the babies that came in the same day Gracie went to U of M is home with her family - she is 4 months old now and although still has many hurdles to over come - she is at least home for now and her family is together. We bonded since the girls were next to each other for so long and even when they weren't, we saw each other daily and would ask about each others babies.

When you are at places like that you get to the know the kids names and their illnesses and only after awhile do you get to know the parents names - you get referred to by the childs name - this is Gracie's Grammie or this is Taya's Mom or Dad.

So many children with heart issues and other very serious illnesses and all needed a miracle - some of them got them and some will continue to need them through the years. I saw a lot of loss and terrible sadness and I saw wonderful miracles too. At times asking for Gods help seemed so selfish because so many others wanted and needed the same thing. I then I would think of all the other hospitals with children and it would be overwhelming at times. Things you just don't think alot about until you are there and you see it and experience it.

Admittedly there were times we were jealous of those who got the miracles they needed. I know it sounds terrible and please never for one moment think that I would want that childs miracle taken from them or their families - I just kept wondering why we Gracie couldn't get one - with all the wonderous things the medical community can do - they just didn't have a lot of solutions for Gracie - so much is still unknown about infant pulmonary hypertension. This poor child couldn't catch a break anywhere - never felt so hopeless in my life and so out of control. My daughter had to make some extremenly hard decisions - between a rock and hard place type of decisions with no clear answers no matter what she decided. I believe she made the absolute best decisions she could to attempt to save or prolong her life - but
Gracie's little heart was very weary by this time and none of the medicines would work to help control the hypertension.

Hard to believe that when we went to the hospital she was teething, laughing, eating like a piggy and only "seemed" to need oxygen - she was given the title "princess of the PCICU" For the first 4 days nurses doted on her and she loved it. At least we got some good pics of her on Mothers day with my daughter - that was the last day of seeing her smile, laugh and being happy. After her MRI the next day - she never regained consciousness or was able to off a ventalitor. I know my daughter and I will think of her every Mother's Day.

Wednesday, September 9, 2009

It's been 3 Months....


The 3 month anniversary of Gracie's death was this past weekend - Labor day and we were very busy and my daughter and grandson were there also - I can't say for sure if she realized it as she doesn't pay much attention to the dates but it kept nagging at me.


Sometimes I get upset that her pictures will never be changed because there will be no more pictures of her. She will forever be 5 1/2 months old. I wonder what she would have looked like now as babies change so much as they grow. How long would her hair be? How many teeth would she have now - she was teething in May but we never got to see a tooth. I have pictures of her on my phone I can't erase them, even though they are of her when she was sick. I get upset that her life won't have meaning and she will be forgotten like she never existed, never mattered.


I have faith, but sometimes I sure question and wonder what the purpose of this is and will it outweigh all the pain? I remember telling my daughter that I am sure if we knew - it wouldn't be good enough for us because there could never a good enough reason for this.


People expect you to be "over this" by now - even though they don't exactly say it; they are shocked when something comes up and it brings a tear to your eye or you say something reminds you of her. Heaven forbid you want to talk about it - most people get very skittish and change the subject. I get they don't feel the same way - they didn't lose their grandchild. I never got it before either, not really. I didn't know that the feeling of loss is just there everyday - you don't have to think about it, you don't have to speak of it - it is just there always. Mainly you learn to do all things you need to do while carrying this hole inside you. You learn to go on, but you also learn that this hole will always be with you. I miss her today as much as I did the day it happened - it hasn't lessened it is always there.


I don't know why I wonder, but I do wonder if it is the same for other grandparents. How did they learn to live with it? How do they deal with being their for your child and hurting for their own loss? Sometimes I wonder if I am dealing with this as well as I should be?


Monday, September 7, 2009

Labor Day Weekend w/Family

Labor Day weekend: It was a good weekend with family at our cottage. My daughter and her son come up with us and she had a good weekend and I am glad. I know it was hard for her to see the crafters with all the little girl items and she tries to look away and pretend they are not there but I feel it too. I have another granddaughter and so I have reason to look at things but I try to say in her age range whenever possible - which let's face it - it is almost impossible as my other granddaughter is only 2 yrs. old.

I have ornaments on my tree with all my grand kids names on them and so I found a booth with ornaments and saw a bulb with a little pink angel and it stated In Memory of... I had them put her name on it and although it will be different from the rest of the ornaments, I just felt I needed to do this. Maybe because when I would talk to her at the hospital, I always stated I would love her forever and always, no matter what the out come and so I feel she deserves a place on the tree like all the other grand kids.

My daughter also has been in contact with a lawyer because there are a lot of things that she and I both feel the first hospital missed on at least 2 occasions - which I will speak more of in different post. Her case was referred to a lawyer and I could see my daughter was elated because she didn't think anyone would listen. I am very guarded about this as I am not a sue-happy person, however I agree that it should have been diagnosed earlier and I want to realize what they ignored may have made a difference in her ability to survive. But I worry that my daughter has her hopes up too much - she still has to talk with this other attorney etc. and we all konw it is a long road, at best. I know she says she doesn't care if she wins and it is not about money. She wants to make them see the effect of their poor medical treatment. I also know that she will have to endure alot and I am not sure she realizes all of it. I wish she could find an outlet to make her feel like she is making Gracie's life mean something. She is young and really trying, but I can see the anger, hurt, sadness etc. in her. She is really trying to be a great mom to her son, but I feel like she is a bubble filling up and trying not to burst - she let's out a little at a time but it is still full. Her son has become so attached to her, he doesn't want her out of his sight for long and seems to be concerned that she will be hurt or something. He is only 3 so it is hard to know what he does or doesn't understand. Sometimes he says his sister is in heaven and sometimes he says she is at the hospital - he really doesn't understand except he knows she isn't at home anymore and his Dad is not around now either. So I am sure he is afraid of losing mom too.

Wednesday, September 2, 2009

The first blog....

It has been 3 months since my grandaughter got her wings and the pain is still as raw as the day she left us. It is hard to know who to talk to as this subject is obviously one that people shy away from because they don't know what to say or do to make it better. My daughter is try to "tough" it out, thinking that if she doesn't think about that it will get better or not be painful. I am in conversation with her on a regular basis about counseling but she isn't ready yet.

Her way of dealing with this is different from me - it is not wrong, just different. I need to talk about it and she doesn't want to. Quite frankly I try to hide my pain from her and be strong for her. She knows I hurt too and I can see sometimes she is trying to be strong for me too.

I have tried searching for other blogs and it may be that because Iam super savy at searching the web, but I sure haven't found much on grieving grandparents. I did read a few things and one really did strike a chord with me. It said that grandparents greive double, not as more but double because you are grieving for the loss of your grandchild and you are grieving for you child and the pain they are going through and you can't help them or make it go away. As any mom knows, it is hard to watch your child, no matter what age, suffer and feel helpless to comfort them or make it better.

I have lost many people in my life, parents, brother, friends in high school, co-workers and yet it truly does compare to this loss - it is so much deeper, like there is literally a hole inside me that can't heal or close. I know it has only been 3 months and maybe I have been too hard on myself but I also know that this type of loss is different and is not going to heal the same way.

I have never blogged, (as I am sure you can tell by my rather simple page layout) but I thought this might me a way to express what I am feeling without making others feel uncomfortable. I also hope to help others who may have or are currently experiencing what I am. I believe I will start from the beginning of Gracie's life on my next post. It is important to me that her life matter and she is not forgotten.