The burning question

The question on everyone's mind I know...how are we doing? Well, I've always been very honest on this blog, even if I was writing something that someone might not like or might show a side of me I didn't want to show, I'd write it anyway. I figure if someone doesn't like what I have to write about my life then they can choose not to read it, which is fine.

So here goes...this week has been really hard. When Zoe first died, we were thrust into making the necessary arrangements, we had family and friends visiting from all parts of the country, food being brought over, and so on. After the service, slowly, people started to return to their homes and their lives, but we still had a few lingerers to help Richard and I get through our days with Avery and Lily. While Richard has not yet gone back to work, our schedule is kind of finding it's way to our new "normal" and it is awful. You see, I have always been a bit of an overachiever...so when infertility struck we met the challenge head on and what do you know...triplets! Then we met that high-risk, high order multiple pregnancy challenge head on...ate all the right stuff, gained all the right weight, went to all the right OB and Perinatal appts, read all the right books, etc. Then my body decided - no more! And out they came at 25 weeks. Most of you know the rest from this point having read my blog from the beginning. (If anyone ever wants to start back at the very beginning you can go to our original Caring Bridge site ) The NICU experience and experience of having three very critically ill little girls was frightening but again...we faced that challenge and settled into that life of living our days (and sometimes nights) at the hospital for many months.

When Avery and Lily came home they did not come home as "normal" babies - they had apnea monitors, feeding tubes, and pretty serious feeding issues. Richard and I jumped right in to our new roles as nurses/therapists/parents...and I for one prided myself on being able to get an NG tube in my daughter's nose and down to her stomach in less than 10 seconds with minimal crying. My new identity was forming...I couldn't be the superwoman pregnant lady I wanted to be...so now I would be the superwoman triplet mom of special needs girls. There have been many, many struggles along the way but as I look back over the last fourteen months I've realized that I truly have put my all into my girls...and Richard has been there every step of the way. We vowed that they would have the best therapies, the best doctors, the best caregivers (a.k.a. grandparents) and if new issues arose we would face those head on with the best of the best we could find for them.

This continued when Zoe came home. There was the relief of my guilt I often had about not being able to visit her every day as Avery and Lily needed me at home with them and taking them to the hospital an hour away every day just wasn't an option for us. With Zoe home we had home nursing care for her but that didn't mean we were hands off...quite the opposite as we wanted to make sure that we knew every detail of taking care of her and that she felt she was at home with her family and not just in a nursing care facility. I continued to pride myself on my ability to manage her home care between the round-the-clock meds, breathing treatments, and therapies...the ordering and stocking of appropriate medical supplies & meds, scheduling of follow-up appointments and assessments, Speech school, feeding, and physical therapy "homework"and of course throwing in the more important mommy-daughter time; all the while making sure Avery and Lily got their fair share of "mommy-time" as well. The dishes might not get cleaned every day and the laundry might pile up...but Zoe had what she needed and she was happy. My schedule was set often at least a month to a month and half out between the appointments and therapies, I liked it this way. Richard and I didn't sleep much, but that wasn't important.

I made sure that Zoe was always where Avery and Lily were...she didn't eat by mouth but she was in her highchair just like them at mealtimes; she couldn't sit up or roll over but she was in the playroom just like them. Zoe was not going to feel like an outsider, she was an important and integral part of this family. Richard and I often feared that Avery and Lily would grow up and be closer with eachother than with Zoe. From very early on in the hospital they were co-bedded but Zoe could not be due to her critical condition. At home Avery and Lily, were and have always been together, when Zoe came home we made it clear that they were ALL sisters, they knew eachother, and Zoe was no different, despite her many medical conditions.

Now, the empty spaces on my calendar just remind me of how empty my heart is. Avery and Lily are both doing so well developmentally, they are even on par with many of their chronological peers...and yet I mourn the fact that the therapists will stop coming soon. My identity is in limbo...am I still a mom of triplets? Because that was who I was! I used to mourn not having a "normal" pregnancy or "normal" babies, now we've got two "normal" toddlers but that doesn't change the fact that I want Zoe back. I don't want to get more sleep because I no longer have to do midnight meds and breathing treatments. I don't want to have more free time to go on walks because I no longer have to deal with the logistics of packing three babies plus medical equipment to go anywhere. I don't want to be able to go out to dinner because I no longer worry if the grandparents are comfortable taking care of Zoe on their own in our absence. I WANT ZOE!!!!

I feel robbed, I feel completely empty, I feel like something evil just swooped in and stole her from us. I look at her pictures that were taken just two weeks prior to her death and I think back through each of those days...going back and back and back as far as my memory can take me and I wonder...what did I miss? What didn't I ask a doctor to do or test for that I should have? Did I wait too long to take her to the hospital because I was too confident in my ability to care for her at home and had such fear of her getting more sick by being exposed to the outside world? Did I talk to her enough in those last 24 hours we had with her? What didn't I say to her that I should have before she was sedated and then gone? Did I spend enough one-on-one time with her, did she know how deeply I loved her? Should I have not taken her for that 1 yr well baby check up so she wouldn't have gotten that first cold? What, oh, what could I have changed so that I could still hold her in my arms tonight?

I told her in those final moments that I loved her and that she had fought a good fight, but it was okay to let go. Those final moments before she was intubated, I remember she was trying to sleep, despite the annoyance that is Bi-PAP, she was playing with my hair and then holding my hand and every so often she was squeezing...it wasn't a squeeze as if to say..."Mom, I need you. I'm in pain. Help me." It was more of what a Mother does for a child to reassure her...her squeeze said to me "It's okay, I'm okay. Don't worry."

But I'm not okay, I'm not okay at all. I miss her so much my entire body aches. I can't think straight. I try to think back to the times before she was sick where I held her or gave her a bath or picked her up...I try to remember some moment of physical contact and I try so hard to feel what she felt like to hold...but I can't remember, my body can't feel that feeling. I try to hold Avery and Lily sometimes in the hopes that it will remind me what it felt like to hold Zoe, but they are their own people, unique and beautiful in their own ways. They are not Zoe, nor can I expect them to be. I have some of her clothes in Ziploc bags to hold her scent...but the scent isn't truly hers. The scent is medicinal and hospital-like...it isn't her fresh out of the bath sweet baby smell. I remember holding her for the very last time once she'd passed, I stoked her hair, traced the curve of her nose, the roundness of her cheeks. I looked at every finger and toe, all trying to burn not only the image but the sensation of what it felt like to touch her into my brain, into my everlasting memory. But I can't remember. The only thing that does feel like her is the single lock of hair I have of hers...I can get this sensation of her hair between my fingers and I try to transmit that to what it felt like to run my fingers through her thick curls. Everything seems just out of reach.

This journey of grief if unbearable at times and nighttime is the hardest. I'll sit in the rocker, giving Lily or Avery their last bottle as they drift off to sleep and the still, quiet of the night overtakes me and I just crumble. This pain is so big, so all encompasing and yet we still have to get out of bed every morning to start the day anew with Avery and Lily. They get us through the days, but the nights...the nights are the worst. I pray so hard to God and to Zoe, I beg her to come visit me in my dreams...I have yet to have a dream of her where I can be with her again. Instead my dreams are filled with fragmented strange dreams that have nothing to do with her.

And of course I have a new kind of guilt. Like the fact that every achievement Avery and Lily make is coupled with sadness that Zoe isn't here to share in it. Is that fair to Avery and Lily that at this moment I am not fully enjoying their milestones? Don't get me wrong, they do bring smiles to my face and giggles to my belly all day long...but the thought of Zoe is always right there. I know I said in my last post to live your best Zoe life and I am going to practice what I preach...but right now, right this instant, I am so sad and so empty.