Tuesday, July 28, 2009

I have come to a frightening realization these past few days. I am not exempt. My family is not immune.

Yes, we have been through a great trial but that doesn't exclude us from further suffering. I almost feel that the enormous blessings we received through having Charlotte just make us more vulnerable. To pain. To sadness and illness. To death.

I don't want to cower here on earth. I don't want to fear God, fear the lessons left for me to learn. Fear more loss. At first I felt that after going through losing Charlotte, I could get through anything. I don't think that anymore.

I see Ella crawling, making her way ever more quickly to an ever widening world of dangers, and I am terrified.

I don't want to be a mom filled with fear, afraid to let my children grow up. My child, rather. Because despite all our efforts, we could remain a family of four, with just three of us huddled together in this dark world.

Or we could have another child, another beautiful, amazing child, with serious medical problems. It could happen again. We are not exempt. Each roll of the dice is independent, is a gamble.

Is this another phase of grief? The strange euphoria, the numbness, the gratitude, the longing, the hope, the sorrow, the fear?

My heart is filled with fear.

I am trying to have faith, I am trying to place my burdens at the feet of my Lord and remember that life isn't all up to chance. I am trying to rely on God and feel Charlotte close. Please Charlotte, hold my heart, and may God write His will upon it.

Monday, July 27, 2009

This is the last picture I took of Charlotte awake and alert. Hours after this picture was taken she made a turn for the worst and never really woke up again. It's pretty amazing though...you can't tell me she isn't seeing something over my head that let her know it was okay to go. That it was time to go, and not to be afraid. I wish I could have seen it too.

Thursday, July 16, 2009

I've been sitting here for over 30 minutes typing paragraphs and then erasing them.

I've typed about all the major life events that have happened in our family in the past few months. I've typed about the first tentative FORWARD crawling Ella did last night, in pursuit of a Phantom of the Opera cassette tape, which materialized out of nowhere. And how this morning I fell asleep ever so breifly on the floor and woke up to find a plant overturned and Ella slapping mud spot next to it. I wrote about a picture of Charlotte that's been on my cell phone for months of her asleep in an oxygen mask, days before she died. She was just exhausted from breathing so fast and her hair looks so dear. And her eye lashes. All snugged up in that blanket, waiting for her ride home. I can't bring myself to erase it, even if it means erasing pictures of my sister's wedding hair I took to show my friends. I wrote about my general mistrust and disgust in the IVF clinic and their lack of organization and apparent idiocy. I wrote about my other sister's IVF cycle, which didn't work out and for some reason plunged me into a self-pitying depression. I wrote about how lucky I was that Charlotte was my first and all my attention and devotion could be poured out onto her and I have no lingering thoughts that I wasn't there for her enough, or I wasn't there for my other kids enough. It was all her. I wrote that February and July are pretty much my least favorite months. August is probably just as bad but at least I can tell myself the State Fair will be here in a few weeks in August. I live for the Fair. I wrote about my brother sitting in the other room listening to various acoustic covers to every popular song released over the past two years that he more or less missed. I wrote that we were assigned our Festival of Trees space, and received our first box of butterfly ornaments. The space is O2, which pleased me. Charlotte's o2 represented, to me, all her limitations in this life, and her tree in space O2 will represent the miracle of her life. Oxygen or not. I wrote about day four of the South Beach Diet. (I don't condone this diet except for emergencies like an upcoming wedding and a size 8 petite bridesmaid dress.)

And yet I feel like I have nothing to say.

Sunday, July 05, 2009

I've known our latest swim team test results for about a week now but with Charlotte's birthday and everything I haven't felt like divulging them yet. The results were quite surprising. I'm not sure how I feel about them.

On average, a man with a balanced translocation produces 82% affected swim team members. Zar, on the other hand, produces only 51% affected. That along with the 8% otherwise affected swimmers, means that 41% of Zar's swimmers are normal, which is actually quite high for people in our situation.

I really expected that the results would show that only 10% or so were normal, and the doctor would advise us to not attempt IVF, and the decision would be made for us. This is why I went ahead with the $2000 test, as I thought it would put an end to this IVF mumbo jumbo. Not so. There is an extremely good chance that if we attempt IVF we will get at least a few good healthy embryos.

At the same time, my sister is in the middle of her 2 week wait on her IVF cycle. On the day of her transfer, (Charlotte's Birthday) she went to the hospital by ambulance in horrible pain and they almost did not do the transfer. She had another attack that afternoon and it was like watching the first half of "A Baby Story" live, one of those ones with a midwife and no epidural. Quite frightening, especially for someone like myself who has only given birth neatly and quietly through a large abdominal surgical opening.

Anyway since then I've had the pleasure of giving her one of her nightly injections of what appeared to be honey, and hearing her complain that already none of her clothes fit.

I can only imagine that someone who gained 55 lbs with her last pregnancy (such as myself) would start to swell long before the first injection.

Anyway, none of this matters, of course, if it results in a healthy child. I am so worried about her cycle not working out that I tend to assume she is already pregnant.

So there's the latest on the reproductive front. When Zar got our news, he said "We're gonna do this." I will probably call the clinic tomorrow and find out what the next step is for us, and how big the next check needs to be to take that next step.

Friday, July 03, 2009

On Tuesday night I was laying on Charlotte's bed by the light of her princess nightlight. Her bed has a pink and blue quilt on it, the one the hospital gave us to wrap her in just before she passed away. I'm glad to have it. Incidentally, when she died she was wearing a diaper and a pair of lavender Mickey Mouse socks. That's it. I have those too. The funeral home saved them for us. We buried her in a cream silk dress her grandmother Hayes picked out, a necklace from her grandfather, lace trimmed socks and a tiny white pair of daisy undies. (No more diapers for Charlotte.) So very sweet. We buried her with her favorite toy, a peach colored monkey with a well worn green crinkle ear she loved to chew on. We buried her with a pink incredibly soft blanket, the kind you would never actually let your toddler drag around, because it was too soft, and too pale, and well, it cost $80. But Grandma Enslin wanted her to have it. We buried her in a white casket, with those cheesy daisies carved on the lid, but now that I think about it, they matched her undies.

When we buried her I whispered "Charlotte, hold my heart!"

On Tuesday night it was Charlotte's birthday, and she got her headstone. When we buried her I thought we would have her headstone in place within weeks. It took months, but it was worth it. It is beautiful. I chose the butterfly for various reasons, discussed in depth here.

I am so happy it is done. I am relieved. It feels wonderful to walk up to her little spot on the hill and have something more to mark it other than lines in the grass. It is perfect.


The night it was placed, a weight was lifted from my heart, but there was emptiness too. I felt, for a moment, I had done the last thing I could do for my Charlotte.

And so begins the next project.

I am going to do a tree for her for the Festival of Trees. If you don't know, the Festival is a yearly fund raiser in early December for Primary Children's Medical Center, where Charlotte received all her health care. Where Charlotte was treated, cared for, saved time and time again, and finally, where she died. Christmas trees are decorated and donated to the festival and then auctioned off. This year, Charlotte will have a butterfly tree. I've just exchanged my first little butterfly in return for a donation to Charlotte's Butterfly Fund.
Even though she's flown away, she's always here, holding my heart.