What are the girls up to lately?

I'm feeling the need to write tonight so here comes another post...this one is more newsy though and more about Avery and Lily. These girls are growing up before my very eyes. Avery actually spent most of the day today in big girl panties!!! Woohoo Avery! She had a tee tee accident late in the day and then said to herself "It's ok Av-er-y, it's ok." I may have written this previously, I'm not sure. But Lily will sit on the potty, sometimes a tiny drop of tee tee comes out, but more often than not a little toot will come out and Lily will look at me and say "Where's the frog go Mommy?" Then she'll stand up and look into the potty for the "frog".

Along with wearing the big girl panties Avery has become more opinionated in how she dresses. Some nights she sleeps in her day clothes and wears pj's during the day. Sometimes she wears pj's two or three days in a row, we change them day to day, but she'll refuse to wear anything BUT pj's. I've heard from other moms that I should be happy that she at least keeps her clothes on at all! She also likes to put on leggings and then leg warmers and then maybe a pair of panties on the outside.

Both girls have started to do more imaginative play lately...they LOVE the show on PBS called The Big Comfy Couch and so Avery has decided that she is the main character "Loonette" and Lily is "Molly Dolly"...Namo and Mimi are "Granny Bonzo"...and Richard and I share the role of "Major Bedhead." It's so funny b/c I'll come into a room and she'll say "here comes Major Bedhead" or Avery will leave the room and Lily will way "Where'd Loo-nette go? I'm a gonna go find her." That's the other cute thing about Lily's speech pattern...she likes to play hide and seek so when she wants to play she'll either say "I'm a gonna go hide" or "I'm a gonna go count."

There has also been an increase in the level of sibling rivalry, although it is so mild I can hardly call it rivalry. Lily likes to hold little things in her hands...lots of little things. Sometimes it's a few Little People and a few pacis, sometimes it's all the Little People pigs or all the Little People dogs...usually there is a theme of the day as to what she's got in her hands. Needless to say she can get upset if her group of things is disrupted (this is also a component of her sensory issues...it's a coping mechanism that allows her to feel secure in her surroundings). So you can imagine how discombobulated she can become when Avery takes something from her. Well, the other night Richard was on the sofa with Lily after having fed them their dinner and Lily was holding one of their little dolls who they also refer to as "Molly Dolly". She had it in her hands and then saw Avery spot the doll and start advancing in Lily's direction. Richard said that Lily clutched the doll to her chest and started scrambling to get out from under the blanket and off the sofa as fast as she could, all the while saying "I'm a gonna get down. I'm a gonna get down. I'm a gonna get down."

Oh and if there's ever a game show for toddlers called "Name That Tune" Lily will totally blow any other kid out of the water. You can hum two bars of any song, I mean ANY song, even if she's only heard it once and Lily will tell you the name of the song. She can also recite the following bedtime prayer: "God in Heaven hear my prayer. Keep me in loving care. Be my guide in all I do. And bless all those who love me too." I will try to get an audio/video recording of this b/c just writing out the words hardly does justice to the cuteness level of this recitation.

I told Richard today and that both Avery and Lily got his memory genes (mine are awful...Richard's is amazing). He then proceeded to paint a picture 12-13 years in the future of Avery and Lily saying "Mah-um! I told you that five times already!" Oh boy, I'm in for it!

They also like to do stretches like Nina on The Goodnight Show and of course like Loonette on her clock rug...it's good for them though, I like that they like to do this. I'm thinking of trying gymnastics or yoga with them. Either activity should help feed Lily's proprioceptive needs because stretching gives a lot of input to the joints and muscles like tumbling does. We have recently added to our "sensory diet" tools...a great friend of mine made Lily the most beautiful weighted blanket (she makes them custom at VERY reasonable prices if anyone is interested let me know), a common and often very helpful thing for sensory kids to have, we've got 4 pounds worth of ankle weights, a large bouncy ball, a neoprene band, and a scooter board. Lily will probably be one of the strongest toddlers ever...she can really motor on that scooter board, and it's hard work! I tried it and it is fun, but man I can only do it for a couple of minutes. They both like me to chase them on it or sit on my back while I turn around in circles on it. The scooter board is good for Avery too as she works on her coordination.

Richard told me that Avery was making him bean soup the other day while out in their playhouse. He said all day long it was bean soup, not much else, just bean soup. Well he turned on the food network and lo and behold they're making Tuscan Bean Soup...he said Avery was completely mesmerized!

Oh, and we really have to watch our mouths around here. We don't curse but I have apparently uttered an "Oh darn it" a time or two b/c all of a sudden they're both saying that. So now I'm trying to change that to "Oh fiddlesticks" or "Oh pickle juice" (like they say on the Big Comfy Couch). So Lily says "Oh fiddlesticks." Then lowers her eyes and her voice and says in her best Mommy tone "Don't say darn it". My mom told me today they said "That's not my problem" oh dear! Where did they learn that one????

She has God

I just spent the last several days with my local mothers of multiples club helping with the Spring consignment sale. It was the first time I ever shopped a consignment sale and the first time I ever sold at one too. It was A LOT of hard work but it was also a lot of fun, not to mention all the cute Spring/Summer clothes I got for Avery and Lily at bargain prices. I just joined the club a couple of months ago and have only made it to one meeting so it was nice to spend several hours getting to know the moms a bit better. Its’ hard to know where I fit in; or even to feel like I fit in with surviving triplets. They aren’t twins but they aren’t complete triplets either… regardless, many of the women in the club have really made an effort to reach out to me and it has meant so much.

In the afternoon, I happened to be working the door as a greeter and had a truly incredible moment with one of the moms. I have no idea how or why the conversation started but she told me that she had four children, the youngest two are twins with a mitochondrial disorder and she herself has a condition that has caused her to have two strokes (one when the twins were only 10 days old) and as a result two brain surgeries with a third looming on the horizon. She told me this in such a way that did not make me feel sorry for her but rather she told me in a way that showed me how deep her faith in God is. How firmly rooted she is in her faith was so apparent it caught me off guard and it also gave me an opening to share a bit of my story when she said she thanks God every day for her life because “He has been preparing her for her path”. (I think it is safe to say that most people who have to deal with all that she deals with on a daily basis would be hard pressed to utter those words with such conviction.) I told her briefly about Zoe, about the three girls being in the hospital for so long, about the feeding tubes, the hearing aids, the oxygen, etc. etc…and then I said to her, (and I know I’ve said it before…but it was kind of like this time I heard what I was saying instead of just spouting off a rehearsed line I have in my head when talking to a stranger about our girls)...

I said “I know Zoe’s in Heaven now.

She can hear.

She can breathe.

She can sing & laugh.

And she can run & dance.”

And just in that moment it became so perfectly clear to me, like God was amplifying what I was saying to this mom so that I would hear myself…that yes, Richard and I and our therapists and specialists did everything in our Earthly power to give Zoe a fighting chance at life and a fighting chance at a good life with us. And yes, people with the medical conditions she had can and do go on to live productive, fulfilling, fruitful, and happy lives. BUT…no one on Earth can do what God has done for her in Heaven.

NO ONE on Earth could instantly allow her to hear angels sing and sing like one herself. NO ONE on Earth could instantly heal her lungs. NO ONE on Earth could instantly give her a strong body and nimble legs. Only God could do this for her…our battle on Earth for her would have lasted our lifetime…would we have fought that battle? No question! Of course we would have! And did we make sure her life here was the best it could possibly be? I’d like to think so. She laughed and giggled and smiled and played just like a baby should! But we cannot do what God can do, we are not bigger than God, (as much as I wish I was sometimes)…I’m just not and just like Jeanine told me back in November (a day that will be ingrained in my mind forever)…Zoe doesn’t need me anymore. She has everything she’s ever needed and then some!

Zoe wants for nothing…she needs nothing…because she has everything…she has God. Isn’t that what we as parents are supposed to WANT for our children? To have a perfect life where there is no more sadness, no more pain, no more tears, no judgment, no fear? Zoe has this. She truly truly does. When I say this I don't mean to say that her life on Earth was full of sadness and pain, her smile in all those pictures speak to that..though I can't deny that she endured far more than any person, grown or infant should have to endure. If I could have physically taken on her suffering during each minute she was in the NICU and beyond I would have.

We did the very best we could do for her with the knowledge and resources we had, but we are limited. As human beings we are limited and we can only do so much. We do the very best we can in everything we do and everything we did for Zoe. We loved her with all of our hearts and will never stop loving her like that. We believed in her strength and her courage...we comforted her, we nurtured her, we sang to her and held her, we did everything a parent would and could do for their child and we did it the best we could. I don't think Richard or I can look back at those 14 months and have regrets or think that we could have done more...we did everything we could, given our limitations...because we are not God.

A quote to share

Zoe's teacher shared this with me today and I had to share it with all of you:

When a child dies, an angel comes down from heaven, takes the child in its arms and spreading out its large white wings visits all the places that had been particularly dear to the child. From the best loved place the angel gathers a handful of flowers, flying up again to heaven with them. Here they bloom more beautiful than on earth, but the flower which is most loved receives a voice so that it can join the song of the chorus of bliss.

-Hans Christian Andersen

And another Zoe moment...a dear friend of mine had been holding on to a gift she had for my girls since Zoe first came home from the NICU (Oct '07). She finally had an opportunity to give it to me last week. She handed me a small package wrapped in ladybug paper; inside was a packet of personalized cards that read "Avery, Lily & Zoe Sorrells". I think she hesitated giving them to me as she was uncertain if I wanted personalized items w/ Zoe's name on them...she decided to go ahead and give them to me and I am glad she did. The cards are very sweet, green and pink striped with a cute little ladybug at the top. Realize...the Zoe moment here is the fact that she had these made a year and a half ago, before Zoe died, and before I started having ladybug/Zoe moments. I thanked God & Zoe that instant for letting me know she's still hanging around me. It just goes to show that the great plan is well thought out and laid out months, even years, before we have a clue about what is to come or has been. Thank You Lord!

Lately......

The last few weeks have been very busy. We were away with our families for almost a week around Zoe’s anniversary. We wanted to be able to spend time with those that have supported us the most in the last year and really since the girls were born. So we headed to the beach. It was a little chilly but I think our overall purpose of being somewhere beautiful and calm was achieved. We didn’t want the days spent together to be another memorial service for Zoe but we really wanted to try and just remember her and how much we loved her and how much she touched each of us. Not that any of us in attendance really need a reminder of how much we loved her. But I think more importantly is that we want to find a way to enjoy that time each year as best as we can.

We don’t want Avery and Lily to grow up dreading the anniversary of their sister’s death…it will be a day that will be commemorated for as long as we are alive. We also want them to know that they don’t have to cry or grieve in silence, alone. But that they have a group of people who love them and adore them and will support them wholeheartedly. I know Avery and Lily are too young to really comprehend what it means when they tell us Zoe is in Heaven and I know that as they get older and begin to comprehend that they too will have a grieving period to experience.

I subscribe to the National Share (support for pregnancy and infant loss) newsletter and they really do a fantastic job in compiling stories and writings from parents. The most recent newsletter focused solely on the grief of children when a sibling dies. Most of the entries were written by siblings or from the perspective of a sibling. The resounding message I got from the issue was to not sweep the death of a sibling under the rug…thinking you can just “deal with it later” will not help the grieving sibling, even if at the time of the death of the infant the sibling is too young to understand (as is our situation). It further acknowledged what Richard and I do in our daily lives…Zoe is here, everywhere around us. Her pictures are up, we talk about her, we weave her into our lives in a manner that is very natural. I hope and pray that when the time comes that Avery and Lily really do know what it means to have a sister in Heaven that Richard and I will have the wisdom, understanding, and compassion to help them through their grief in a healthy and loving way.

I believe that we are planting that seed even now, as in how we spent our time at the beach. We did a balloon release in Zoe’s signature color, lavender. It was cold and windy but the girls were very sweet and drew pictures on some of the balloons and gave them kisses. After the balloons had disappeared behind the clouds, a single seagull came flying by. It circled us a few times and then just stayed kind of close by. It was probably wondering if we had food to give it, but I said “Maybe it’s Zoe telling us she got the balloons.” Avery and Lily both said “Hi Yoey bood”. And then proceeded to chase it! The next day we saw another seagull and Lily said “Hi Yoey bood.” It was pretty darn cute.

The other thing we did was to gather a bunch of scrapbooking papers and supplies and make our own Zoe memory books. I printed about 500 photos of her and hand selected a scrapbook for each person based on what I thought they would pick themselves. So the one good thing about the cold weather was we were inside, sitting around this huge table, doing something creative, looking at photos of Zoe, Avery, and Lily and just being together. It was really great. No I didn’t finish mine yet, I’ve still got a page and a half to go, but considering I am so not a scrapbooker I’m pretty pleased with what I’ve got.

I did get a little sad when I was looking through the photos; the same photos I’ve seen a million times before and realized there won’t be any new photos of Zoe. What I have is what I have and that’s it…no more. No more birthday pictures or just being silly pictures, so cute pictures of her walking hand in hand with her sisters, no princess dress up pictures…I’ve got tons of photos but that’s all I’ve got. I had this same realization the other weekend when I was cleaning out the girls’ closet for our multiples club consignment sale. I was dividing the clothes into groups based on single items, coordinating items, and matching items. I had only one “triplet” set of little jumpers that was left over from the three of them…everything else was a “twin” set. That also made me cry…this is only the second time since they were born that I’ve cleaned out their closet and already I have no more Zoe clothes. I was going through them and remembering the days Avery wore this or Lily wore that and smiling at the memories. I can still do that with what I’ve got of Zoe’s that I’ve kept…but again, what I have is it…no more.

I know I’m not “supposed” to cling to the “things”, and that her “memory will be alive in my heart forever”…blah, blah, blah…I’m sorry but it just stinks! She was a baby and she’s gone and I hate it! There is so much that I won’t get to do with her, so much that I dreamed of and now that’s it, just dreams. I think I kind of floated through the week at the beach a bit. I didn’t even really get that sad…just once or twice while I was alone in the shower and maybe a few tears when we talked about her with Alice. I don’t know what it was, but I did feel joy during the trip, I wanted to feel joy…it’s just such an odd thing to commemorate the death of a child…it really is unnatural in every sense. Like I said though, I think we did a good job as a couple and as a family and I know we’ll continue each year to do something similar, but it still is just an odd sensation.

Lately there have been a few moms on some of the message boards I’m on all coming up on birthdays and anniversaries and the same message keeps circulating “What should I do? Whatever I think of never seems like enough.” To which I reply with what my counselor told me “No matter WHAT you do it won’t be enough, ever…you could do 100 different things and it would never be enough. What IS enough is our love for our children.” Why do we as parents and mothers think that our love isn’t simply enough? Why not? It is a love unlike any other…some have described it as primal…the intensity of love that you have for your child is immeasurable, beyond compare, and completely indescribable. Someone without a child can scarcely begin to understand it. Richard and I were talking about Avery and Lily (and Zoe too of course) and how we just look at these little girls that we produced and we literally can’t stand it. We are completely overwhelmed by the enormity of our love for these wonderful, beautiful, amazing little girls. And I do believe that Zoe’s death has increased our capacity for love and compassion. Whenever I read of another ill child or infant who has died my heart breaks for the family and for the mother…I cry every single time and can’t get them out of my mind for days, if at all. I recently read of a mother whose son is sick and couldn’t come off the ventilator. She wrote of how the doctors extubated him and then he just wouldn’t breathe and how she begged the doctors to let her try to comfort him. Her sense of panic was so clear in just the two sentences that she wrote…I felt like I was standing at her son’s bedside with her and could feel that sense of dread and fear creep up my spine. It was all too familiar.

I don’t think I had a really good, get-it-all-out kind of a cry until a few days after we got back from our trip. But I did have it and it was good. I kind of know when my grief is coming on…it is always there kind of hanging around but more times now I am able to kind of push it aside (not the thoughts of Zoe, but the all consuming, I can’t think of anything else part of the grief) and go on with my days. Now I notice, I’ll have a few days where I simply can NOT focus, I mean at all…all of sudden I just can’t complete a task and then I get that anxiety that creeps in…it just kind of settles in and makes me feel uneasy all the time and then the insomnia comes and then….then…I’ll be sad, just really, really sad. My birthday is around the corner and people keep asking me what I want. It truly don’t want a thing because the one and only thing I want I can’t have. I used to be able to come up with a pretty good sized list of “things” I needed…but not anymore. All I need is God, my husband, my surviving daughters, and for Zoe to be with me always.

I’ve had a couple more Zoe moments in the last month or so. These however did not involve a ladybug. I was praying really hard to “see” Zoe, to “feel” her presence and one night as I was falling asleep I had this vision of me, lying on the bed between Avery and Lily and this soft white light hovering above us. I felt like I was trying to focus on the light to see what it was and all of I sudden I said out loud “it’s Zoe!” and with this instant comprehension came this warm sensation that rushed from my head down through my toes. I truly felt her there kind of enveloping us. Then…just last week I was again having insomnia, and I went to lie down in the guest bedroom…the room Zoe shared with us. Sometimes I lie in that bed and visualize her there and the mornings I’d lay her on the pillow next to me with Avery and Lily and we’d all just snuggle. Again, I was praying hard for her to pay me a visit and again I was kind of falling asleep when I felt something next to me in the bed (I was alone)…it had the sensation of about the size of Lily or Avery (they were both asleep in their room) and again this rush of warmth just covered my body and as that happened I had this conscious understanding or “knowing” that she was there. I want these moments to last and they never do for very long…I just stay really, really still in hopes that I can cling to the moment just a second longer.

I wonder if Zoe visits Avery and Lily in their dreams. I know they dream because they talk in their sleep…especially Miss Lily. She says some funny things in her sleep too…she must dream about eating a lot because she’s usually saying “cracker” or “avocado” or something like that. Poor Avery though has had a couple of nightmares where she is crying “no, no, no”, then again it could just be that she’s dreaming about me telling her I need to change her diaper. Speaking of diapers…I would guess that by summertime we won’t need them anymore. Avery goes tee tee in the potty every day at least twice per day if not three or four times. And Lily tries to every single time Avery does. What’s really funny though is Lily will sit on the potty and sometimes she lets out a little toot and she’ll say “There’s a frog in there. Where’s the frog?” It makes me laugh every single time! Lily is also very sweet with their doll house. She goes right to it every morning and says “good morning” to all of the family members. She’ll show me when the baby uses the potty or when the big sister washes her hands. The Daddy brings home pizza for dinner and mommy takes baby for a stroller ride.

It is just so amazing to see their creative imaginations at work. They really do amaze me. They sing songs and are starting to be able to identify letters in the alphabet…they know A, L, Z, M, and D (Avery, Lily, Zoe, Mommy, Daddy) and we’re working on the others. They are still very much into music. Avery will say “Yets dance togever” and you have to take her hands and dance around the room…which of course we do every single time. They currently love to play hide and seek…they tell me to hide and you can hear them count and they close their eyes half way. They love it! Especially if I hide somewhere they aren’t expecting.

I am so thankful to have their sweet little voices and beautiful shining faces in my life every single day. I cannot imagine if I didn’t have them and I pray God will let me keep them here for a while. I’ve got some very cute video footage of them walking around the house holding hands…they’ll say “fwends” and then either hug or hold hands…it melts my heart every time.

You can't tell from the angle, but we're flying

a ladybug kite

ZOE ROSE MEMORIAL FOUNDATION

We're live!!!

http://www.zoerose.org/

Thanks to Lorry our graphic designer who has created our identity and Brad who is working painstakingly hard to create our website. We've got the first few pages up with many more to come.

Currently you can access the following:

Homepage

Our Story

Our Namesake

Donations & Events

We'll be phasing in the rest of the sections over the next couple of months. I'll be sure to post an update here each time a new section goes "live".

Also...you will notice on the Donations & Events page that our first big event of the year is coming up. The Swing for the Roses Golf Tournament will be on April 4th, 2009. Registration deadline is March 15th so please visit the website to find out how you can register. Even if you can't attend you can still register as a "Phantom Player" or a "Phantom Foursome" and we will recognize you at the close of the tournament, on the website, and send you a commemorative golf towel.

Thanks to everyone for your initial support of the foundation we have many long term plans and initiatives and look forward to the coming months and years of actively helping families of micro preemies.

If you're a blogger I would love it if you would mention something on your blog and add a link to the website. We'll have a free widget in the future so you can link directly to us.