Continued blogging

Hi everyone!
Some may think it is weird that I am still updating this blog now and then. I had every intention of closing the blog when Bailey passed away. However, I want to share with you the reasons I have not done that.

Throughout the course of Bailey's Journey, I was referred to many many blogs created by Moms who have lost their little ones. They belong to an awesome category of women that I, regretfully, get to be a part of. We are "Angel Mommies". Although it is not a group that I would have chosen to be part of, it is a "title" that I now have that I will do everything I can to make the best of. Because of this, I want to be a strength to other people who find themselves in similar situations to those that I found myself in over the last year - the fear of what will come of your "sick" baby, coping with a roller coaster ride of ups and downs with your baby, or the death of your sweet, sweet baby. The many blogs that I have been directed to throughout our experiences have been such a strength to me. They have shown me that "life can go on" and helped me realize that I am completely normal and the feelings I have - good and bad - are feelings that everyone has when they are dealing with their grief. Not only did they provide me strength during the roller coaster ride and Bailey's eventual death but I still go to them often - when I need to remember that it is ok to be sad ... and .. it is ok to be happy.
I have had so many people contact me after they have been directed to our blog. Everyone has their own reasons. Everyone has their own challenges. And everyone has their own situation. If our blog can help just one person know that they are "normal" and that we have been through the things they are going through and we are making it, then I want it to do that! This is one of the main reasons that I will continue on with Bailey's Journey.

I also truly believe that through sharing my thoughts and feelings to help others see how we deal with things (or don't deal with them in some cases), I help myself heal, in a sense.
I need to be able to share my feelings. I need to talk about Bailey. She is my daughter. She is a part of our family. We didn't go through all we went through - the decisions, the preparation, the pain, the worry - for nothing. A very dear friend of mine who is also an "Angel Mommy" gave me some very good advice. She told me that if she didn't recognize her baby who had passed away then "it was all for naught." I have never forgotten that and I never will. People are often times very uncomfortable talking about Bailey to us. I understand why and I do my best to make sure that they know that it is ok and that they don't have to be nervous about it. But, still, there are days when I don't want to make them feel better. I want them to make me feel better. Again .. something I need to get through but something that it helps to be able to "blog" about.

These are the main reasons that I feel like I want to continue to blog. I would love to have you continue to follow Baileys Journey with us. Of course I had planned to continue her blog to update everyone on her progress as she grew bigger and stronger. That wasn't meant to be. However, as many of you know, our beautiful little girl - Bailey Grace Blake - touched the lives of hundreds and hundreds of people even before she was born. She was loved more than any newborn that I know. Good things came from her experiences - to our family and friends. We have seen the proof! I want to continue the good that she has already spread and I will do this by helping others with sharing our thoughts as we grieve and grow from her passing.

We love you all! Thanks for everything you have done - and continue to do - for us!

Hawaii trip

Last week we went on a great trip to Hawaii with Chris's work. It was really nice to get away from the cold, cold winter here in Utah and spend some time with good friends. The trip was planned quite some time ago - before I even knew I was pregnant with Bailey. Therefore, when we found out that Bailey was coming we decided we would just take her with us since she would still be so young. Then, as the pregnancy progressed and we found out about the potential problems with Bailey (thinking that she had OI), we made arrangements and figured out the best way to travel with her and her potential medical equipment. I was so looking forward to spending some alone time with my little girl. (Chris golfs and I hang out at the pool - Bailey would be my pool buddy. *smile*)
As the time neared for the trip and Bailey had passed away, I continued to look forward to the trip - some time for just Chris and I. However, the closer it came, the more anxious I became. Apparently, I am having some major separation anxiety from Parker and Caleb. It isn't that I didn't think that they would be well taken care of. I KNEW they were in good hands. And it wasn't that I thought I could take care of them better than anyone else. Nothing like that .. I just don't want to be away from them. I am not 100% sure but I am attributing it to the fact that I lost my little girl - I don't want to be away from my boys, too. Silly, I know. But something I am dealing with. I have even had some issues sending Parker to school. I kept telling myself that that was because he was struggling so much emotionally and I felt I needed to "protect" him. However, he is doing better but I still have those feelings. *SIGH* Will I EVER feel "normal" again?
In addition to my worries about leaving the boys came my sadness at missing Bailey while in Hawaii. My thoughts kept wandering to "I would be snuggling Bailey here on the beach" or "I wonder if she would like the water", etc, etc. No matter how I tried, I couldn't keep my thoughts from straying to the time I should be spending with her. Then there was the baby on the Beach with her Mommy, Daddy, and big Brother. She was adorable in her sun bonnet and little sundress. She was barely learning to sit up and she was giggling and cooing happily. I asked her Mom how old she was and, as I had guessed, she was 4 months old - just a little older than my Bailey would be. Again, I know these things will get easier/better with time but it is still so hard to see little girls - I was so looking forward to dressing my baby Bailey in her cute little dresses and putting her cute little bows in her hair.

Don't get me wrong - we LOVED our trip and had a very enjoyable time. We are so very blessed that we were able to go. With all of the struggles we are still having financially due to the medical expenses, funeral expenses, etc there is very little money left for us to do things together so it was a VERY welcome vacation. Thank you, thank you, thank you, Allied, for the paid vacation. It meant so much to us!
Life CAN go on - even with ups and downs - and, luckily, the downs are getting fewer.

Hello, Bailey

Hello, my pretty little girl.

It is snowing outside again today and I keep thinking about how I would love to have you here to snuggle with. You would still be too little to go out and play in the snow with your brothers but it would be so fun to be able to bundle you up in your warm winter jammies and take you out to watch them. Instead, we all bundle up to come and visit your grave.


I imagine you would be starting to giggle and smile by now. I remember those days with your brothers and how much joy it brought to hear them gurgle and giggle and make all those happy baby sounds.
There is not a day that goes by that I don't think of what stages you would be in ... what you would be learning to do .. and how happy I would be to watch you reach those milestones.

I know that there is a reason that you are not here with me, Bailey. One day I will know what that reason is. But, meanwhile, I miss you so much. I love you my little "Bailey Bai".
Mommy

Bailey's present

I have mentioned to many of you how very important it was to me to get a headstone to put at Bailey's grave. After all of the funeral expenses, the burial plot and the medical bills that we are still working through, I just couldn't find enough money to do it. Our initial goal was to do it for Christmas. It was going to be our Christmas present to Bailey. However, it quickly became very apparent that we still weren't going to be able to afford it that soon so I made an alternative goal - Bailey's 1st Birthday. I decided if I couldn't do it now then I would save and get it in to celebrate her 1st Birthday next year. This was the best I could do.

I visit the cemetary often - normally at least once a week. Everytime I go there I struggle because there is no headstone. I did have the funeral home make a temporary and it is actually much nicer than I expected so there is something there but it still breaks my heart every time I go for some reason. I can't explain it - I don't know why - but it really bothers me that we havent been able to properly mark her grave.

One day a few weeks ago my Sister, Melinda, called me and asked me if Chris and I could go to lunch with her that Friday. Of course I said "Yes". We set a time to meet and I didn't think another thing about it. However, as the day came closer, my suspicions (and Chris's ) became stronger. We had no idea what was going on but we knew something was. Finally on Thursday night (the night before we were supposed to be meeting for lunch) Melinda called me and told me she couldn't keep it a secret any longer. She was concerned that we were going to be upset with her and she wanted to tell me what she had planned. She had made an appointment for us to go and pick out a headstone for Bailey that she wanted to purchase for us. I was so happy I was speechless. I hated to accept such an expensive "gift" as I had been looking into them and knew how much they cost. However, I really didn't want to turn down the offer as I so wanted to get this done. I still have no idea how to show my gratitude to my Sister for this wonderful thing that she did for me!!!!

We met Melinda the next day and were able to pick out a headstone for our sweet Bailey. Melinda paid for it and made all of the arrangements to get it set. We were actually suprised to hear that they were going to be able to get it in before Christmas. How excited I was. As Parker put it - "It can be Bailey's Christmas present.". Unfortunately, due to the many snow storms that we have had over the last week and a half or so, they have been unable to put the stone in yet. However, we are still hoping that it can be Bailey's wonderful Christmas gift. I know that it is for me. I am so very grateful for my Sister and her willingness to help us do this. It is so important to me and I feel such a sense of relief knowing that it will be done soon.

Thank you, "Annie". We love you!!!

Parker's talk

I have been asked several times to post the talk that Parker wrote and then gave at Bailey's graveside service and I keep forgetting to do it.

As many of you know, when we were planning the program for the graveside service Parker asked if he could "say a few remarks". Of course we told him he could. I asked him a couple of different times if he would like me to help him write down his talk and he kept telling me "No Mom, I am good." To be honest, I was a little worried about what he was going to say or that he was going to get up there and freeze so I kept pushing. Finally he said to me "Mom, when you love someone you don't write down your remarks, you just speak from your heart." Boy did I feel stupid. How smart my little boy is and how strong!
Eventually, however, I did get him to write down some of what he wanted to say "just in case". He wrote almost an entire page of feelings consisting of "being able to play with her in heaven" and "loving her even if she was going to be in a wheelchair", etc. With my help he cut it down to a short but very sweet talk that he delivered so bravely at his sisters graveside service. Those words are below:

"I love my sister, Bailey, very much. I love her more than anyone in the World loves her. Me and my brother, Caleb, wanted to play with her and take care of her. When we found out she was sick I was very sad. I will miss her very much but know I can play with her when I see her in Heaven. My little brother, Caleb, doesn't understand what happened but I will tell him about Bailey when he is older because she will always be our Sister and we will always love her. Bailey will always watch over me from Heaven and be my Angel."

It happened again

Chris and I have come to call it "ruining their day". It is when people ask you "How is the baby?" and you have to respond by saying "Actually, she passed away when she was 2 days old." It just seems to ruin their day. It is uncomfortable - they don't know what to say and I do my best at trying to make them not feel bad for asking but no matter what .. there is that tension in the air.
Today I had to go for an ultrasound on my leg to check for blood clots again. The radiologist asked me why I had been on Lovenox shots for the last several months and I told her it was because I had been pregnant. She then proceeded to ask me what I had and I told her a little girl and then it came ...
Radiologist: "How are you feeling since she was born?"
Me: "Good."
Radiologist: "And how is the baby doing?"
(Silence while I decide how to respond.)
Me: "Actually she passed away when she was 2 days old."
(More silence.)
I HATE these conversations. Not because they make me sad but because I am still struggling to figure out the best way to handle them. Should I just avoid them by saying "Fine" and moving on. I just have a hard time with that because she isn't "Fine". However, sometimes I am just not up to explaining over and over what happened to my precious Bailey.
Hopefully I will figure out the best answer someday. For now, I will just continue to "ruin peoples days".

2 Months

Today was the 2 month anniversary of Bailey's birth. It has been a very rough couple of days at our house. Parker came home from school the other day and told me that he never wanted to leave home because he is afraid that if he leaves that the rest of his family will die, Chris was mad at the World because he lost his precious baby daughter. He told me he has a hole in his heart and he doesn't know how to fix it. Unfortunately, neither do I. Meanwhile, I miss my darling daughter immensely. I was supposed to be able to shop for her this Christmas, to buy "girly" things, to have my baby to celebrate the Holidays. I have to keep telling myself - and reminding my family - Angels abound at Christmas time and we have our own.

Sorry to be such a "downer" but I felt that it was important to make sure that even the "bad days" are documented now and then. I have received so many emails from other Parents that have lost Children telling me that they read our blog often. I think people need to know that it is normal and ok to hurt. (At least this is what I am told.) Although our family really does try to be strong and has done fairly well, we recognize there are going to be those "bad days" too.

After having my long talk with Parker after school the other afternoon, he indicated that he needed to go see Bailey. I have never taken him back to the cemetary since the graveside service. I go weekly but usually go alone. We had already planned to go as a family next week to take a little Christmas Tree to put on her grave but he said he couldn't wait. As we were talking he kept saying "I just need to see her" and I realized that I probably needed to make it clear that he wouldn't see her in person. He said that he realized that and told me that he just needed to see her name or something. (Unfortunately we haven't had enough money to purchase a headstone yet but I did have the funeral home make us a temporary marker which is there - phew!) Anyway - we drove over and Parker had a talk with his Sister. He then talked to Bailey's "friend" (the grave next to her is a baby boy who died at 5 days old). Little did I know that he was going to "bring them home" with us. Once we had gotten back in the car to head home he started talking to both of them. Yes, it is very disturbing to me when he does this (he has done it a couple of times) but I have been told that it is normal for him to have her as an "imaginary friend" from time to time.
Anyway - he told me that she goes with him to school sometimes and that she has been watching him practice the song for his School Christmas program. He said that she learned it really fast and she sings VERY LOUD. I told him that is because she is an angel and angels love music.
Who knows? Maybe she is there with him - when he needs her.

I love my boy and the faith, hope, and love he has for his Sister.