For the record, I have no idea why in my previous post, the last half is teeny-tiny print. I've tried to fix it a million different ways and I give up. YOU SUCK BLOGGER.
So, the anniversary. It's Saturday, did I mention that? Yeah, three days away. One year. One whole year without her. I cannot even wrap my mind around it really. Some days my life with almost seems like a beautiful, yet nightmarish dream. Other days it was if I just had her in my arms just yesterday. I was just crushing 8 different medications and feeding her all her thickened bottles of formula. It's been a long time though........a whole year, remember?
I thought I was going to make it through this week OK, I thought I was handling it well. I was wrong. I've started I don't know how many fights with Husband over stupid, asinine things. I've been a real snapping turtle with Turkey, and haven't been able to discern why I feel so plain awful. Oh yeah, my daughter died. That's it........
I find myself spacing out, getting dizzy for no reason, crying randomly and earnestly. Oh and lets not forget eating.......because that is my solution for dead-child-syndrome. FOOD. Man, I'm a psych doc's dream.
It probably doesn't help that we are in the midst of trying to find and buy a new house. Part of me is so excited for this, because hey, who doesn't like a new house? But of course, part of me is horribly, terribly sad, because this is the house where Isabella lived.................and died. What do I do with that? Of course, I can't stay here forever unfortunately. We were actually looking for a new house right after Isabella was born and then the seizures started and well, you know the end to that story.
I know she's not here in this house and it's not like if we move she'll stay or here or something crazy like that. It will just be very hard to sell this house to a new family and not ever come back. I don't even like thinking about it.
A year ago today Husband and I decided it was Isabella's time to go home. It wasn't an agonizing decision, it didn't take hours of screaming and crying like I had pictured in my mind so many times. I had spoken with her doctor over the phone early that morning while Husband, my mom and Isabella's hospice nurse sat by waiting. I'll never forget that conversation. I had just told him that the antibiotics had not changed anything for our girl and that she was in fact, three days later still running a very high temperature and no amount of motrin/tylenol would stop it. She had stopped sucking first and shortly thereafter stopped swallowing. We were at a loss. Why now? What changed in her brain? More importantly what do we *do*.
He said to me "Michelle, we can always put her in the hospital, put her on an IV antibiotic. That's an option. But, since she cannot suck or swallow any longer and her SATS are so low (oxygen) you know what will happen." He paused. I paused and then said "You mean, a feeding tube, a ventilator, etc, etc, etc." "Yes" he replied. He continued, "I know how you and Husband feel about that sort of stuff for Isabella, so I just want you to consider everything." I sat there for about 30 seconds and said simply, matter-of-factly, "It's time isn't it? We won't be taking her to the hospital." He just said "OK then, let me know what you need, when you need it."
That was that. I had just decided that I would not save my daughter's life. I would let her die.
It simply goes against the laws of nature to make a choice like that. And I guess I don't have to tell you it was not an easy choice. If I had been selfish and thought of only myself, I would have had her at the hospital in 10 minutes. But I knew in my heart what she wanted from us as a family, what she would ask for if she could have. I wanted to ignore what my heart was telling me, but I couldn't.
I will struggle with this choice for the rest of my life on Earth. Every.single.day. Not in the sense that I regret it, or think I made the "wrong" choice. But just in the sense that now that I know what life is like without her, I wish I would have been more selfish and forced her to stay alive. I know that's awful, but I can't help but feel that way now. It was a lot easier to let her go when I didn't know how painful it would be living my life without her.
I have to remind myself of her suffering. I hate thinking about it, but I have to. Otherwise I get caught up in this fantasy of having a thriving daughter and completely forgetting what her life would have really been like had she not died. At this point she would be totally bedridden and I would not have the time to feed her 6 times a day and hold her all day. She would get all of her feeds through a tube. She would have been in and out of the hospital all winter, because every little cold Turkey got would have been full blown, life threatening pneumonia for her. I would have a busy 4 year old and a healthy 7 month old and a very disabled little girl. I would have finally had to cave and hire help and that would have killed me. When she was here I would hardly ever let anyone help me, she was MY daughter and she needed ME. I was very selfish with my time with her and I will never regret that.
I miss her and the thing that bothers me the most is wishing I could watch her grow up. Wondering if that was my only chance to have a girl and I came thisclose and it slipped away. My life on Earth seems so long and lonely now without her. Yes I love my two sweet boys and my Husband, but I will never have that piece of my heart back. Nothing can replace what is missing now.
I told Husband last night, while I was hysterically crying that all I want is "for Isabella to be here and to not have Lissencephaly." At some point I have to accept that it isn't going to happen. This isn't a really bad dream, this is my life.
I miss you sweet Isabella, more than you know thank goodness. I know everyday for now is ten times more beautiful than it could be on Earth. I know you are surrounded by warmth and love every minute of every day. We will be together again someday and God has promised to keep you little for me so I can raise you in Heaven when I get there. I cannot wait to see your first smile at me and hear you say my name. To watch you dance and run and hear your sweet laugh. I know I will have to wait a while, but it will be so worth it. I love you so much baby girl, I hope you know it. We are always thinking of you and talking about you, but I'm sure you know that. Turkey asks about you almost everyday still and always wants to hear stories about you. He still has some great memories of you that he'll always cherish I know. We know that wherever we go, you will follow. You will always be a part of our family........death can never change that. I love you , I love you, I love you.