A post in parts

Part 1….a stay at home working mom
I started back to work in May, twice a week for an architect friend of mine. It’s worked out really well so far, as the friend and I worked together in the past, he has really interesting work and it gets me out of the house twice a week. I find that I enjoy being home with the girls much more on the five days I am home, because I miss them so much on the days I work. Even though they are thoroughly acting like two year olds these days!

I’ve also picked up a little work of my own to fill some gaps and bring in a little extra cash…so here’s me working at home on a day I wouldn’t normally be working! That’s lily in the bouncy swing in the doorway, Avery in the Ergo on my back while I draw some furniture plans at my drafting table...multitasking at it's finest!

Part 2…bet you didn’t know this about me

So, for Richard’s birthday this year I gave him tickets to see the UFC …that does not stand for Ultimate Frechbraiding Club…it does however stand for Ultimate Fighting Championship! I know, I know why would a woman ever want to go to this? To answer you, I have no idea, but I really do like watching the UFC on television, we’ve even gotten the pay-per view fights and have been avid followers of the Ultimate Fighter show on Spike. Not very AP of me, what can I say? I do have to say that there is a huge misconception about UFC as being a “fight to the death” kind of thing, but it’s really not…it is a legitimate sport…the athletes are highly trained and conditioned in mixed martial arts…jiu jitsu, muy thai, kickboxing, wrestling, boxing…it really is amazing the kind of situations these guys get themselves in and then somehow…someway they get out! Now granted, there are a few fighters that probably do just want to “kill” their opponent, but most of the fighters are educated, well-spoken, passionate athletes that are dedicated to putting this sport on the map. The current light heavyweight champion is even from Athens, Georgia! They are not the fake wrestlers from the WWE with weird costumes, personas, and “battles”.

There was a very definite demographic represented at the fight…it wasn’t trashy WWE wrestling…it wasn’t crooked boxing promoters…it was primarily young people, mostly guys, many of whom look like they might have aspirations of being in the UFC as well. There was even a mom there with her teenage son (she was asleep the whole time). The best part about the night? It was the one and only time I’ve been to a sporting event or concert where the women’s line at the bathroom was shorter than the men’s! I do have to say that I prefer watching the fights on TV as I truly missed Joe Rogan’s commentary. (Yes, Joe Rogan from Fear Factor) And I was really sad that Chuck “the Iceman” Liddell went down quickly in the first round…I was pulling for the “old” dude and was looking forward to a good long, exciting fight… at least 3 rounds if not the full 5. So there you have it…something that you probably never would have EVER guessed about me!

Part 3…Avery and Lily are graduates

After 15 months of post-NICU therapies, Avery and Lily have been discharged from physical therapy and from speech therapy!!! Yea girls! These little girls are amazing at every turn. Our ST said she had a report due to the insurance company last week and there was no possible way for her to say that they were delayed because they had mastered all the developmental skills of a two year old (remember they’re only 21 months, 18 adjusted). This is very exciting news…but also very sad. Susan was their PT, but I managed to wrangle her in to being on the board of our Foundation so she hasn’t gotten rid of us J .

Nancy started with the girls at the same time Susan did, last June, when the girls had major feeding difficulties…she told me over and over that they would eat and I have to say I hardly believed her. Feeding was such a struggle, struggle isn’t even a strong enough word, I can hardly even verbalize what those months were like. You have the knowledge that (1) your kid is premature and therefore starts life being “behind” (2) your kid is under weight and has to catch up (3) your doctors and specialists have hammered into your head that they MUST get a certain quantity of formula for a certain amount of calories every day or they won’t grow, their brains won’t grow, they won’t develop at it will be all YOUR fault (4) your kid has a tube going from their nose down to their stomach that you, yes you, have to place down their nose when they pull it out (at least once a day if not more) and (5) you are so freaking tired of women with full term babies talking about how their kid nurses like a champ and won’t stop eating when you are absolutely CERTAIN that your kid would not mind if you didn’t feed them for a week, couldn’t nurse because it might literally kill them, and has to have formula so think it is the consistency of thick grits…oh, and you don’t just have one of these kids…you have THREE!!! But, Nancy was right, they weren’t on their tubes forever, they actually did end up taking all bottles, they actually did end up eating from a spoon, they actually did end up transitioning from bottles to sippy cups..and now they’ll eat almost anything they want…absolutely amazing! And that’s just the feeding part of her job!

She also helped them (and us) learn sign language as a form of communication, and taught them to speak. She taught us how to work with them to help stimulate the communication part of their brains and now they easily have over a 100 word vocabulary, are putting 2, 3, and 4 word sentences together…and are trying to sing songs with us like “Whoa, whoa, whoa, boat” (row, row, row your boat)…”hush baby”(hush little baby)…”happy to, to, to” (happy birthday)…”wock a baby” (rock a bye baby) and ”itsy bitsy” (itsy bitsy spider).

Nancy and Susan were both in our house every week, sometimes more than once, each time spending 2-3 and sometimes almost 4 hours in our home. They became part of our family, part of my girls’ day, part of their lives. They were also a link to Zoe for me since she died. In fact, Nancy said back in March that she didn’t really need to come anymore, but I felt that for the girls (and for me) that I needed some continuity of what we did before Zoe died. Since we barely let anyone, except those that HAD to be in our house, Nancy and Susan were very much a part of my life and I didn’t want to lose that connection. It seems as more time passes…I lose more connections to the time before Zoe died. I’m getting ahead of myself…that’s Part 4.

So, here’s a huge congratulatory hug to my girls, Avery and Lily to my friends, Susan and Nancy…I can’t imagine where we’d be had they not come into our lives and I can never thank them enough for helping my girls grow and helping me become confident in caring for my tiny preemies.

Part 4…It still hurts so much

Today is the 16th…and like every 16th of every month I can tell you exactly what we were doing at every hour, every minute of the day on February 16th. I remember the very last time I looked into Zoe’s eyes when she was still awake and before they fully sedated her to be intubated. My sadness still comes in waves, some days I start to think “My gosh, I think I really will get through this” and other days it rips through me…the hollowness in my heart and stomach are as huge as they were that day. I miss her so much; I wonder what she’d look like. I wonder what she’d be doing after dinner when we strip the girls down to their diapers and let them run around the family room before bath…would she be crawling and chasing after them or would she be sitting watching them, shaking her little hands, squealing, and wondering what in the world they were doing. I wonder if she’d be eating by mouth and what she might like…would she like chicken nuggets and milkshakeys (Avery’s word for milkshake) too? Would she eat peas one at time like Lily? Or wad them in like Avery? What sounds or even words might she be saying by now…after over a year of working with Linda? I can only imagine what it would be like. I can only imagine because I’ll never know.

Several people have told me they’ve had dreams about her or felt they were receiving messages or signs from her. And all fairly recently, in the last month or month and a half. All of those that have dreamt about her say that she has no connections, no tubes, no wires, she is usually a bit older, running around skipping and playing…and so happy. Is she trying to tell me through them that’s what she is right now? She’s free…totally free and experiencing a sense of joy that I cannot even comprehend? I hope so, for her sake, but oh my God I wish she were here.

At night, I lay down with Avery and Lily until they fall asleep and I pray to God, I talk to Zoe, I plead with Him to make sure Zoe knows how much we love her, how deeply we miss her, and just how sorry I am that I could not prevent her death. Did He call her home to Heaven because life on Earth would have just gotten worse for her? I can’t imagine that, I only imagine positive movement forward…just what I pictured at the beginning of February when she started sitting up all by herself. I thought she was stronger on the inside and out…I was fooled. I was foolish to think a baby with such serious conditions and a medical history thicker than most encyclopedias was actually going to be a “normal” child so quickly. I got too comfortable in her progress, her demeanor fooled me. She was always so happy, she smiled so much, she played, she had a sense of humor, she laughed…a baby with medical conditions and tubes and wires shouldn’t be so happy right? They have every reason and every right to be fussy, mad little kids…but she wasn’t, she was the complete opposite. Oh how I feel like I failed her while she was here. One day maybe I’ll see that I didn’t, but I feel like if I did everything I should have done she’d still be here.

Logically I know that I was not in control…I do believe in God and I do believe He has a divine plan for us. Someone recently told me that when bad things happen and we suffer we often ask “why?” Her explanation was that it was God’s way of preparing us for the future, preparing us to be able to help others. So…we can now relate to couples experiencing infertility, women on bed rest with a high risk pregnancy, extreme prematurity, multiple births, extended NICU stays, special needs children, and the death of a child…have I left anything out? I know we have a plan set out for us to help others through our Foundation and I also have no doubt whatsoever that Zoe is in Heaven; that she is happy, she is free, she has no sadness, no pain and she’s just waiting for us. I believe all of this and I never doubt it…but I still want her here in person. I want desperately to stroke her soft silky hair, not the glass covering her picture in the frame…I want to kiss her sweet soft cheeks, not the cold marble of her urn…I want to hear her squeal with joy, not have to look up a video taken of her months ago that is never long enough…I want to feel the weight of her body against my chest when I hold her, not the weightless feel of her t-shirt kept sealed in a Ziploc to preserve the last thing I have that smells like her.

On those days when I think “I will get through this” I start to wonder, get through what? What am I reaching for? What is the goal here? To not think about her, never! To not shed a tear when I think about the last day spent with her, I seriously doubt it. To not be sad when I talk about her, maybe…but I doubt the sadness will ever leave in total. Why is the counting of months and days since her death so important to me? Why do I have to relive February 16th on the 16th of every month? Why do I have to remember every single horrifying detail of that day? Am I counting to say…look you got through another month without her? Is this something to celebrate? No, it’s not. Am I counting to get closer and closer to being with her again one day, when I am called home to Heaven? Maybe. I don’t have the answer; I have no idea why I do these things. We’ve hit seven months now; that means a year will be here before I know it, and then what? Then it’s just on and on, more days, more months, more years without her.

She is forever our 14 month old baby while Avery and Lily get bigger, stronger, and get older.
She was a true angel on Earth; we both talk about how many times it was as if she was there for us instead of us being there for her. And now, she’s our angel in Heaven. I miss you Zoe, terribly, and will always love you!!!