The first 24 hours....

I picked up your baby book tonight and thumbed through it. For the most part it is empty. Page after blank page reminds me of all the things you never got to do. When I last wrote about your life, I left off where I was waiting on medi-flight to come and get you. It didn't take them long to arrive. Children's to Baptist isn't much of a drive. They sent me back to my room as they prepared you for transport. They promised to bring you down and they made good on their word. They brought you down in your isolet. Carissa hadn't been able to see you other than that brief moment in the nursery window right after birth. This was her chance to really see you.

She, of course, wanted you out of that plastic box. She had been waiting on you for 9 long months and she was ready to play! But they had to go. They needed to get you to Children's and get you settled and prepped for surgery. Your dad went, your papa went, and your aunt nini went. I was stuck at Baptist because I had just had a c-section less than 24 hours ago. Granny stayed with me. If I had to guess I would say she probably thought there was a good chance that I might fall apart if left alone. I still had yet to even get to hold you. My arms were empty and my heart was heavy. I tried not to think about what you were about to encounter. Open heart surgery? On a brand new infant? I was so lost and so confused.They told me that they had never had a case like yours before. They needed to do a video conference with other top doctors from across the nation to determine what would be the best plan for you. If I had known then what I know now, I would have asked better questions. I would have demanded a transport to Boston. I wouldn't have been so naive and trusting. I didn't know every hospital wasn't equal. I didn't realize the importance of having the right doctor. I busied myself by starting to pack up and demand my own release. My doctor was basically like heck no you crazy lady! You just had surgery! But I was persistent. He and I made a deal, I spend the night in the hospital and he would release me first thing in the morning if I promised to take care of myself and take it easy. Sure doc.....whatever you ssay. I told him that if he wasn't there to release me then I was walking out. I didn't care. He stayed true to his word and was there bright and early to release me. Granny rushed me over to the PICU at Children's where my baby lay waiting to be taken into the OR. I had never seen so many tubes and wires on such a tiny human. I cried. The nurse told me that you would be going back any time now and Granny told her that I hadn't even gotten to hold you yet. The wonderful nurses came in there and gathered all the tubes and wires and gently placed you in my arms.

It was one of the most precious moments of my life. You had brown hair. Not much, it was more like brown fuzz. You would be my only dark headed daughter. You have beautiful dark blue-gray eyes, although you do not open them. I didn't get to hold you long because your team of doctors came to take you away. They escort us to a personal waiting room to wait. I know why they gave us our own waiting room. There is a chance you might not make it through and they want us separate from the normal people in case that happens. They prepare us for the 6 hour wait we are about to encounter. They promise to call out with updates at least once per hour. I don't even know what I am feeling at this moment. I think shock is carrying me through. But dread is filling my soul. Please Lord don't let that short 5 minutes that I had with her be all that I get. The surgery begins. And so we wait........

Mother's Day and More

This sucks. Mother's day sucks. I don't know why, it just does. It's not that I am not grateful for my living children because I am. I really honestly, truly, pinky swear that I am. I love them more than life. It is just that a piece of me is missing. And it will always be missing. You should be 11. You should be in the 5th grade. When I pour hours into volunteering at the school, I should catch a glimpse of your face every now and then in the hall as the 5th graders shuffle past. But I don't. And I never will. And people will always look at me and wonder why I am not "over it" yet. Why I still feel the sting. There are very few people that really understand. There are very few times when I will willingly admit that I put off the grief process for many years. I went over it, under it, around it, but never through it. Because, let's be honest, that wasn't any fun. In fact, it down right sucked. Like worse than this (or any other) holiday. I don't know where I am at on this journey. I'm lost. This whole feeling it thing is.....is......I don't know. There was a reason I didn't allow myself to "feel" any of it for so long. Maybe I'm not as strong as I want to think I am. Maybe I am just as lost as the next person.....

Monday Morning Memories

I have been wanting to find the time and energy to sit down and write a new post for days now. But now that I have the opportunity, my mind is blank. I went back through my old posts and decided that I should write the next part of Chloe's story. I has been months since I wrote the first part, but I can't do that today. I don't know why. So I started thinking about all the things that came along with her death. All the emotions, all the hurt, all the inconsiderate things that people say. I started thinking about Chloe's older sister and what she went through. We have had a lot of kids in our community die this school year and I keep thinking about the siblings they left behind. When Chloe died, my oldest daughter was two and a half years old. A super smart kid. Very observant and very loyal to her sister. Chloe was HER baby. That is truly how she felt. When Chloe died, nobody had to tell Carissa....she already knew. She could feel it inside of her. She wasn't even at the hospital with us when it happened. I decided that she should be able to attend her sisters viewing and funeral. I thought it the right thing to do. It sucked to try to make a 2 1/2 year old understand death and I felt angry as I realized that some of my daughters innocence was being stripped away right before my eyes. At such a young age she was already learning how cold and unfair this life can be. The viewing and funeral went okay for her. Or so I thought. I will never forget one of the most heart wrenching experiences that I encountered after Chloe's funeral. It was probably a couple of weeks after. We had been visiting the cemetery daily and I though my daughter had done pretty well at grasping it all. She kept wanting to go get Chloe and I would patiently explain every day that we could not. That she was gone and going to get her was impossible. One day I was speaking with someone when really loudly and really angrily, Carissa informed this person that "MOMMY PUT CHLOE IN THE DIRT!!!" I was taken aback. I sat there stunned, with tears filling my eyes as I asked her what she meant. "YOU PUT CHLOE IN THE DIRT AND YOU LEFT HER THERE!" I tried explaining to her that we bury our dead, but she was two and there was no hope. She didn't get it. In her mind, this was all my fault. I had put Chloe in the dirt and left her there and refused to go get her. Carissa was ticked. And she remained mad at me for a long time. So now I had one daughter that was dead and one that was furious with me. Looking back on it, I can see that in her little mind she must have been wondering if I was going to put her in the dirt too. She was probably scared to do a single thing wrong for fear of what might have happened. I have never experienced such gut wrenching emotion as I did that year. Carissa eventually quit telling everyone that I left her sister in the dirt. What a relief the end of that phase was! I can honestly say that I thought I might have a breakdown every time I heard those words. I never wanted my baby to go in the dirt. Carissa is wise beyond her years and I know that is in part because her childhood didn't give her much time to be innocent and unburdened by the world. I still have my days of anger and sorrow that even words cannot accurately describe. My heart goes out to every child who has ever lost their sibling, their mother, or their father due to death. I know there is a grand plan. I just wish that I could see it. I made a video of Chloe earlier this year. I can't post it here but I can share with you the link. Please feel free to watch it. https://www.facebook.com/photo.php?v=10150700029472317
I won't leave it "public" forever, but I will for now. Until next time.......

The Storage Bucket

It has been 4330 days since she left this earth. 4330. That seems like a huge number! It will be 11 years come June. Today I am washing her clothes. It took me that long. I have pulled out her huge storage tub several times over the years but could never make myself rifle through it and pull out all the clothing. This is probably because I put the pillow she died on right on top. That was a dumb move. So every time I open the bucket, I see the blood splotched pillow and I just return the lid. Today, I picked up the pillow and sat it to the side. I pulled out each item of clothing, piece by piece, and slowly placed it in the washer. The smell of being stored away has long since replaced her smell. I didn't open the bag that contained the clothes that I sent her to the funeral home in. I will save that bag for another date. But everything that I managed to keep throughout my many moves is all tucked away in there. Stuffed animals, blankets, crib set, her lock of hair, a bible the hospital gave me when she died, and on and on. I don't even know why I am writing about this. I just felt the need to share it with someone. Or maybe document this step for myself. Who knows. I'm kind of crazy like that. Maybe it is because so many of my friends are in the newer stages of grief and I want to let them know that it is okay if it takes you many, many years to make a small step. Society is quick to judge us, thinking we should be over that by now or wondering what the big deal is. They don't know and I pray for their sake that they never will. But I am sick to death of the stigma that surrounds us. It is frequently said that the grief of bereaved parents is the most intense grief known. When a child dies, parents feel that a part of them has died, that a vital and core part of themselves has been ripped away. And it is true. So what if it took me over ten years to wash my daughter clothes? And why does it matter to you anyways? Are you upset because I am not "better" already? I will never be better. And you will probably never stop being uncomfortable. You don't want to be faced with the fact that if it happened to us, then it could happen to you too. You would like to remain in that world where all is good and safe and that children outlive their parents. We are a horrible reminder to you that life doesn't give anybody what is fair. I will always be Chloe's mom. She will always be my middle daughter. When people ask me how many times I have given birth, the answer will always be three. Let's say I just magically got over it...what would you think if I never mentioned my child's name again? If I just let the grief completely go? Would it make you feel better. Would you deem me as normal at that point? Because I am pretty sure that if I just magically got over it then I would be the farthest thing from normal. Whatever "normal" is. Us parents are on a long, sad journey that can be very frightening and extremely lonely- a journey that never really ends. I will say it again, there is no timetable for grief's duration; there are no rules, boundaries, or protocols for grieving. Each parent will almost always become a new and different person. This is not a bad or wrong thing. Parents never forget a child who dies. The bond they formed with their child extends beyond death. We are survivors and have been strong enough to endure what is probably life's harshest blow. Don't judge us. We know why you encourage us to get over the loss. Grief due to losing a child is so painful that you just want it to go away. If only it were that easy! This message (rant?) could go on forever but I should probably stop here. I'll leave you with a few quotes and try to quit going months between writings. Until next time.....

The sorrow for the dead is the only sorrow from which we refuse to be divorced. Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a duty to keep open; this affliction we cherish and brood over in solitude. - WASHINGTON IRVING, THE SKETCH BOOK , IN MOFFAT 1992, 270

and....

Parental grief is boundless. It touches every aspect of [a] parent's being...When a baby dies, parents grieve for the rest of their lives. Their grief becomes part of them...As time passes, parents come to appreciate that grief is [their] link to the child, [their] grief keeps [them] connected to the child. - ARNOLD AND GEMMA, IN CORR ET AL. 1996, 50-51

and lastly....

There is a need to talk, without trying to give reasons. No reason is going to be acceptable when you hurt so much. A hug, the touch of a hand, expressions of concern, a willing listener were and still are the things that have helped the most...The people who [were] the greatest help... [were] not judgmental. It's most helpful when people understand that [what is needed] is to talk about it and that this is part of the grief process. - DEFRAIN ET AL. 1991, 158, 163

Those little life lessons....

Things I have learned in the last two days:
People will never cease to amaze me.
Sometimes no matter how badly you want to fix a bad situation, in the end it's better to just let it go completely.
I don't tolerate people that are rude just to be rude. I don't have to and I won't.
Deep breaths and the phrase just let it go repeated in my head works for me.
Love is an action and a choice you make every day :)


THESE are the people that matter most no matter what!!!

IT'S 2012 BABY!!!

So I haven't been here since the beginning of November. Wow. I started the story and then just left you all hanging. I never really feel like my life is THAT interesting. Not enough to have people actually WAITING for me to post again. But I guess I am wrong. I know at least two people that want to read it :) This past year was rough for me. I don't know why, it just was. I always have Chloe days every now and then, but this past year seemed to be a Chloe YEAR. Or at least a few months anyways. Please don't tell me that it has been 10 years and I should be over it. It makes my blood literally boil. And I am really bad on holding grudges. It is one thing that I resolved to do this year. Let go of grudges. I say that through gritted teeth as there is some that will be particularly difficult. The new year has me feeling better mentally. We ARE only 6 days in though ;) I have picked back up my Pulse Ox project and have embraced my Heterotaxy family. I will start Chloe's story back and also start on those quilts....maybe. Until next time.......