First I have to say that the new site looks great and now that I have figured out how to write a new blog entry....technology and I do not get along so whenever I have to learn something new on it, it's lots of trial and error and tech support!
I was dismayed when Share went down for a few days since June is the month that is the most difficult. Scott's birthday was actually okay for me on the most part but the other dates have been hard. I really thought his birthday would have been the hardest but I am QUICKLY learning that it's the dates and events you aren't mentally prepared for that get you.. For those of you who don't know in a time span of two weeks my baby was born, difficult decisions were made, and my baby died. Then within the following week a funeral took place. Looking back it doesn't seem as if it was possible for all that to happen in such short of time.
On Father's day of last year is when we made the most difficult decision of our lives of making the choice to take Scott off of life support. Father's day this year was hard and I wrote it all down to soon post.
Wednesday June 19 was the day Scott passed away. He died on his two week birthday. We knew it was coming since we had made the decision for him to stop suffering and be at peace. But naturally it was still hard even when you know it's coming. We had thought he would pass with in 24 hours of him being pulled off of life support but my baby was fighter and he hung on for two days. That made it worse knowing he was fighter and I know he would have been able to overcome things if they hadn't been so severe. But i guess that is projecting which I'm not suppose to do so we will leave it that.
Scott died around 10:20 in the evening. Earlier that day we planned his funeral. Planning a funeral for your baby sucks. And when he's still hanging it doesn't help make it any easier...I would not think about a funeral, I would not think about planning one,and I just could not do what needed to be done. My mind was not ready to accept the what was to be. Bless my dear wonderful supportive parents. They stepped up and planned a funeral for their infant grandson. The were the ones who called the funeral home, spoke with them and explained what was going on and then made the appointment among many other things like finding an outfit for him to be buried in finalizing everything after he passed. That worked for me I told them it was to be a small funeral with no funeral home viewings before the funeral. We did this because I come from a very large extended family that all lives near by. I also come from a family were we all work for the community in someway. firefighters, law enforcement, teachers, public service etc. We would have had crowds of people coming to show their love and support. As much as that meant to us we couldn't handle it, it would have been to overwhelming. I wasn't ready to accept it myself. So we just told close family and friends when and were for the funeral.
But of course with anything involving a child there are certain things that only the parents can do. Which means although I was content with letting my parents plan his funeral i still had to show up for the appointment to sign papers. To this day classical music will bring me to tears because that's what they play in funeral homes. Which I knew i've been to funerals before but when your there under my circumstances....then the pamphlet came out for picking out coffins. that undid me and I almost bolted from the room. But someway, somehow I stayed and endure. I did because I knew if I left I was never coming back and I knew I had to come back for his funeral. So we get everything done and signed. We are in the parking lot and I tell Mike I have to go see Scott. The urge was so strong to see him . ( when I post the other story I have this will make more sense. I had said my goodbyes already and wasn't planning on returning)
So Mike, myself, and my mom go into UMMC to see him. You could tell there were only hours left. I really do deep in my heart think he waited for me to come back one last time. I know my son barely had a working brain but I still think he somehow knew who I was. He knew me. I held him and kissed him. When I left I told my son the hardest thing I ever had to say, " that it's great he was a fighter and was hanging on but that there was nothing to fight for." I told him it was okay to let go. I told my son it was okay to die. We got the call later that night. To show the state of my mind I shed a few tears, I went on reading the chapter in my book I was reading ( reading was my escape all last summer) and then posted a message about his passing on his caring bridge site. I then went to sleep. The grieving started a couple weeks later.
This year I had made plans to go swimming with friends, to get us out of the house. I woke up fine and then I looked outside and it looked like it was going to pour down rain and then I stepped outside it was chilly. Now anyone from Md knows if you don't like the weather you just wait a minute. But those plans that I had planned and was looking forward to seem to be ruined for me I just knew it and that little thing totally unglued me along with other little annoying events that happened that morning. (stupid little life happens events that we deal with everyday but when your barely holding it together just totally adds to your stress...) I knew that I had be alone and To have Colin go some where were he wouldn't be getting snapped at for every little thing and were he could be in a more calming, sane environment. Well wouldn't you know that the awesome support group I have is busy or out of town. the things they are busy with aren't things they can just drop and come to my rescue. ( if they were they would have) so finally locate a a friend and she was at the park and deliver Colin to her. By then I was just about totally unglued. My friend saw this and told me to take as long as I needed. Dear sweet Colin who is very much a routine/planner as his mommy went with My friend without fuss or questions even though this was very unexpected. he accepted that I really had a forgotten errand to run. I decided I just needed to let it out so I went to Scott's grave. I cried, and I talked to him. When I was ready I closed my eyes and took deep calming breaths. I left there feeling a lot more put together and ready for the day. I picked up Colin and by then it was warmer and sunnier and we went swimming.
It's those sudden attacks that sneak up on you that I hate. I am and have always been a planner. I don't like be caught of guard. It's bad enough it happened to me with Scott's birth but to now have to deal with these moments it really stinks! But I endure and continue on because the only other option is to sit at home and be sad the rest of my life and I refuse to do that.
So this ends by very long post, if you read this thanks.
Wow, thank you for sharing. I was touched by your story, as I am by all the stories of amazing courage of the moms and families who endure the unthinkable. What is that quote? Courage doesn't always roar...sometimes it is the quiet voice at the end of the day that says I'll try again tomorrow. Sounds like it has been a tough few days. Glad we got the site back up and running for you!
Yes - definitely those days that you are not prepared for can often be the worst. They just sneak up on you and pull your feet out from under you.
Making the decision to withdraw life support from your baby is a decision that no parent should ever have to make. My husband and I also had to do that, and like you said, even though you know it's a decision that need to be made, it doesn't make it any easier.
Wishing you some peace and sending hugs your way.
Oh big hugs! Those days that sneak up on you are definitely the hardest to deal with. Their birthdays, passing days, the little milestones remembering what happened are hard but you're prepared for them, you expect them to be hard so a lot of times they end up being kind of peaceful remembering days. Many hugs to you, so sorry that Share was down on the days you were remembering him most.
I have been thinking about you since the site went down. I am very glad that it is back up and that you are back. I wish we could have all been here for you during those really hard days though. Libby is right, the unexpected days are the worst ones. When you have no warning and no way to brace yourself for impact. Those days are the days that I am thankful that I have Share and everyone on here.
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