Waiting on our Rainbow Baby

A "rainbow baby" is a term used to describe a child conceived after the loss of another. Parents who have lost  call our babies this understanding that the beauty of a rainbow does not take away the ravages of a storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds.

Avery drew this picture at school for me :)

As I reach the final days, hours and minutes of pregnancy, I'm anxious to meet our little Rainbow Baby. I'm excited to see how he will shape our family and add to it in magnificent ways.

Over a week ago, my midwife told me I was "almost" 3 cm, 80% effaced and that his head was engaged at almost -1... so of course I thought I'd go into labor LAST weekend. I must say I went to work on Monday and Tuesday kind of sad that he still had not made his arrival! Two days ago, my midwife told me that I was still sitting pretty with the same stats as last week. Regardless of any progress or lack thereof, I think once you get to the final stage of pregnancy you feel like your baby HAS to come early because a) surely you are running out of room, b) you are most definitely uncomfortable, and c) it's really hard not to think about every possibility under the sun of how labor will strike. I'm sitting at that point of "in between" one stage and the next. My life is about to change again. I'm nervous sitting here thinking about it all. I do know that I feel thankful that I've made such a happy and comfy space for him, and I'm trying to soak up the last moments of the oneness I feel with him. I'm cherishing all of the sweet kicks, nudges and hiccups knowing this is a special and sacred time. The discomfort I feel is nothing when I think of what my body is preparing for, and what our family has in store!

34 weeks

37 weeks

39 weeks

Even in these final days, I couldn't eat more peanut butter or drink more lemon-y-lime drinks if I tried. These have been my biggest cravings during this pregnancy. I've carried this baby especially low compared to past pregnancies. As I get closer to my due date, I am sure he'll be a pretty big boy!

One thing I want to remember about him during pregnancy is how he moves when I read to Avery. Every single night as I lay down with her to read, I lay on my left side and no matter what the time, he always wakes up and moves around like crazy. Avery is of course highly amazed by this, and it doesn't get old for either one of us. I told her baby boy might have to join us for story time occasionally, which she agreed was a good idea (for now). I feel like he might miss our nightly ritual if we don't include him from time to time! :)

We are definitely on baby watch, taking it easy yet trying to stay distracted and busy enough too. When I get depressed he isn't here yet Jeff reminds me that he IS coming, and SOON. (As if I should need this reminder - haha - but well, yes I do!) We will have this baby in our arms soon.

I love that we know baby is a boy.
I love that we know his name.
I love that he will be Avery and Lucy's little brother.
I love that Jeff and I will finally know the bond of having a son.
I love that we will meet him soon.

Until then... baby boy, we are waiting as patiently as we can! :)

My son

I'm going to share a little secret, which may not be such a secret to those close to me. The first 24 hours in which I found out I was having a boy this time around I was shocked, and pretty sad. I felt sad and then of course horribly guilty for feeling sad. I asked "why" and I told God that baby wasn't supposed to be a boy. I felt jaded and abandoned. I felt crazy for those feelings I was having and keep repeating in my head and out loud "what is WRONG with me?" Even after I wrapped my mind around the excitement of it all, I still was beating myself up for days and weeks just thinking about how upset I was initially and how that wasn't fair to my son.

How selfish and cruel and rude and ignorant of me. After LOSING a child who had a tragic genetic condition, how dare I be upset that this new little healthy life inside of me was a boy. Obviously I knew the most important thing was that baby was healthy and things were going smoothly. Shouldn't I be celebrating? Shouldn't I be joyous? Shouldn't I be thankful? Certainly not emotional, desperate and scared.

I've been processing these strange feelings and I'm realizing more and more that those feelings were related to grief of what I have lost, rather than directed at what our family is gaining. Having not found out the sex of our babies the first two pregnancies, I KNEW that I needed to find out the sex this time around. I needed something to KNOW. Something to feel certain about. I needed to be prepared mentally and emotionally.

Yet, my expectation was that I would have another little girl and then I would finally be able to experience what it felt like to raise two little girls - like how it would have felt to raise Avery and Lucy together. I desperately wanted for Avery to have another sister... not just one in heaven, but one on earth that she could love and bond with and KNOW in a real way. I felt like I needed another girl to fit into that picture I had for my life. On top of that, the pregnancy felt the same as Avery's, and I assumed I was having another girl. I didn't want to be wrong. I couldn't go through the whole pregnancy guessing and assuming incorrectly. The truth of the matter is, though, even if the baby was a girl this time around I'm sure it would have been just as emotional of an experience.

I had to get real with myself. I AM celebrating. I AM joyous. I AM thankful. I'm just those other crappy emotions too. And they can all exist simultaneously, side by side. The loss will still always be there. I'm not afraid to admit that, though I try to hide how it breaks me down sometimes.

Now I'm in a better place, which is why I can finally admit all of this. I thought about writing these words before and was ashamed. What if my son saw these words one day? What if he thought I didn't want him? I was sick.

But I want my son to know how I feel, because of what I've been learning in these weeks of pregnancy, as we bond (one swift kick at a time). One of the greatest examples of family love is exposing the truest, rawest parts of love - and sometimes they don't look pretty and perfect. Love is a feeling. It's not passive, it's always active. It's given and accepted.

See, God has been working on me. He has been displaying before me great examples of His love, and asking me to put my trust in Him. Only in Him. My son is chosen. He was chosen before I could ever dream him up in my pea-sized brain. He is God-known and planned for. He has great purpose. I'm in awe at the greatness of God's love and that he would allow me to be the vessel to bring this child into the world. That I might get the opportunity to love him, and worry about him, and teach him.

I can't rely on this baby boy to heal my grief wounds, and that is not his job. But his life brings us so much hope and his arrival will show our family a whole new way we can love.

A little late to the Mother's Day party

Another year goes by and it’s Mother’s Day again. But it's taken me days and weeks to process where I am this year. The retailers tell us that Mother’s Day is supposed to be filled to the brim with flowers, yummy meals and family time. Or, maybe relaxing alone time --- but that's not my personal preference. ;) For me this year, the day included church together followed by our traditional family picnic at the park and then a pedicure with Avery in the afternoon. We spent some family time outside then cooked dinner and watched a movie. It was a good day by any measure because I was with two of my greatest loves – Jeff and Avery.

Although I’m surrounded by love and dare-I-say admiration, I can’t help but think about the baby that is missing from my life. Lucy is not here. I know she’ll always be here in our hearts… but that’s not enough at times. As Avery told me one time, “I just want Lucy to get OUT of my heart!” Thinking she meant she didn’t want to talk about Lucy any more, I asked her why she would want Lucy out of her heart. She told me that she just wanted her to get out of our hearts and come back from heaven to be with us. Once again, Avery hit the nail on the head. Having her in our hearts just doesn’t cut it sometimes.

A special moment in my motherhood journey was captured in the above picture (the day before Lucy passed away).
 ~July 24th, 2011~

I have imagined what my life would be like raising two little girls for almost two years now. I stop and stare at families with two girls sometimes thinking to myself 'That should be me.' I’ve imagined my daughters relationship with one another and how it could and would be. I think about MY sisters and how they have influenced my life. I worry that Avery won’t have that same sister bond with hers.

Maybe it’s the current pregnancy that has me feeling self-conscious about motherhood in general. I’m sad when people mention “baby #2,” referencing the baby inside my belly. I’m sad because that automatically takes Lucy out of the picture. And it’s not just strangers. It’s happened with people I know that just don’t think about it (and likely mean no harm by it).

When I reconnect with old friends that may not know about Lucy, I feel like they can’t see the full picture. I am confused at how to portray myself as a 'mother of 2, almost 3' children when I don’t have a second child to show. How do I make myself look different? I feel so different and strive to include her. I talk about Lucy. And in my mind it’s awkward and totally weird sometimes because I don't always know what to say. I just hope she’s up there and can feel my love. I wonder if she feels my efforts to include her. I worry all the time about making Lucy proud since I don't have the opportunity to do it in person.

This year I spend Mother’s Day with my first child here beside me, my second child up in heaven and my third child growing and blossoming inside me. It’s strange how these siblings will always be connected -- yet they seem so far away from each other right at this moment.

A couple weeks ago I went in to pray over Avery as she slept one of her very last nights in her toddler bed. As I prayed for her, baby boy started kicking and moving inside me (a feeling that still surprises me and amazes me). And then, as true as anything I’ve ever experienced, a cool, crisp and very real presence was felt. I felt Lucy’s presence. Baby girl was with us. My children were all there with me in very different ways. God’s children that he entrusted to my care. I imagine I'll always be a bit mystified when I think about how He has gifted the role of mother to a girl like me. A girl who hid from Him at times in my life. A girl who ran desperately from Him at times. A girl who even doubted Him for moments, and used His name in vain, and denied Him once upon a time. I feel so unworthy at times.

I’ve shed plenty of tears through this journey of motherhood. I’ve had plenty of laughs, too. My heart has swelled so big that I think it’s full and then it expands again. I’ve felt the pain, heartache, worry, joy and love of motherhood.

I remember a conversation that I had with my mom early in my pregnancy with Lucy. I was worried about how I could love another child as much as I loved Avery. It just didn’t seem possible. My mom described it to me using an image from the animated Grinch movie I watched at Christmastime when I was a kid. She asked if I remembered the part where the Grinch’s heart grew – “In Whoville they say -- that the grinch’s small heart grew three sizes today.” She said – “Your heart just GROWS.”

I know it grows, but I still worry about having enough love to go around. I often don’t feel worthy of the life I carry inside me – my son. I can sometimes convince myself that don’t deserve him and I worry I won’t be a good mother to him. Have I spent all my love? I haven’t, I’m sure, but I worry about it nonetheless.

I love being a mother in the greatest possible way. The job makes me thankful and happy and feel blessed beyond belief. Being a mother makes me feel alive in a whole new way and I have a deep hope for those who desire to be mothers that they may feel this one day. I will fail at certain things but I will not fail at love. I can do this "love thang" from near or far.

It's a...BOY!

Boy, oh, boy! It's a BOY! Just like that, our lives change forever! :)

Last Saturday we learned that we will be welcoming a baby boy into our family. With great excitement, joy and pure fear (yep) two people who considered themselves total "girl parents" are wrapping their minds around the idea of a little man coming into our lives and stealing our hearts.

The "mystery" cake, baked by my great friend Heather!

A little nervous to find out brother or sister?

The family guesses... pretty split!

The following series of cake cutting photos crack me up... between my face and Avery's, oh my. Haha, these will make us laugh for many years. The three of us were all shocked! :)

Here we go... 

We haven't even found out yet and Avery's already got her hand over her mouth.

Can you tell I'm surprised? Haha. 

Days later, Avery was still saying, "Maybe blue means girl and pink means boy, Mommy!"

Everything about this photo makes me laugh.

There you have it - blue icing in the middle means BOY!

The ultrasound tech put photos in the sealed envelope, so here we are checking them out!
Yep, it's a boy!

Excited to start the journey as the thankful and proud parents of a little dude!

I am VERY glad we found out this time around, because I couldn't go through an entire pregnancy again making assumptions, especially since my guess was so entirely incorrect. It was fun to play the guessing game with the first two pregnancies and it was a beautiful thing to be surprised with our girls, but I knew I needed the info this time. I knew I would be insanely emotional either way after our loss and that it was better if I absorbed the news before I was looking my baby in the eyes.

As the news sinks in, I can sense God's healing and redeeming grace reaching down to touch us. This time I get to imagine my sweet boy's face. The baby boy who will complete our family in ways I can only dream of... a precious gift from heaven above.

Man, we can't wait to meet our little super-dude! Hooray!

Faith and Following

This blog entry is an excerpt from my personal {handwritten} journal. I wrote it just over a year ago (6/1/2011) as we had learned information about Lucy in utero that concerned us greatly. I wanted to share it because this was written when I started realizing that Lucy may not make it. So weird looking back and reading these words... I was just over 31 weeks pregnant with her.

.................................................

Yesterday (at our ultrasound with Dr. Stephenson) we learned that the baby appears to have an extra digit on the left hand. As an isolated anomaly they would not be so concerned but the obvious overtone of the visit was that this, combined with the cleft lip and the IUGR could be another sign toward something more serious being wrong with the baby. They would like me to consider a late-pregnancy amnio to test for genetic disorders, such as Trisomy 13 or 18, which are considered lethal and even if the babies with those disorders "make it" through labor and delivery, typically they have pretty severe mental retardation, medical issues, etc and can live only hours or days.


Though I understand why they are giving me these options, I guess there is part of me that enjoys being in this space of not knowing too much. It protects me from having to deal with the greater ethical and medical decisions that they seem to want made. The thought of losing this baby, our baby, is paralyzing and traumatic. But it's tough - I also don't want our baby to suffer or go through too much if he or she will have no quality of life. Choosing to "not know" makes me also feel like I'm living in denial. That part of me that says, "If the technology is there, use it... they are offering it for a reason."


There is so much running through my head right now. I just keep feeling like I could lose this baby at any moment. Every kick, punch, flutter - each and every movement I feel baby make is noted with a mix of happiness and sadness, as well as fear. Great Fear. But feeling baby also strengthens my faith that God's master plan is in action and reminds me that I have to trust in Him to provide peace and strength. This baby makes me a mother twice over - I am blessed.


Yet, my dear friends are throwing me a baby shower next weekend and I'm finding it hard to get excited. I almost want to hide away & protect myself from possible loss. I can't help wondering "what if there isn't a baby to bring home and swaddle...?" I feel ashamed thinking this knowing that the baby may still be fine. Hoping the baby will be fine.


Dear God,
Let your love pour down on me and my family. Let your healing touch be with this baby and let your will be done. I pray that you continue to unveil your plan & purpose for our lives. Please prepare us for what is to come and let Jeff & I draw stength from you when we are feeling lost. Help us to support one another and focus on our blessings. Let us remain faithful even when it feels like hope is failing us.


This child is YOURS, and I pray that you use him or her for Your work. Should I have the opportunity, I promise to raise him or her teaching and sharing Your message. Should I not get the opportunity, I pray this baby feel our family's unconditional love regardless of the time we get to spend together.


Please be with us always and remind us of the miracles that are possible when we remain faithful. Thank you for the gift of family - for Jeff, for Avery, for baby and for our family members near and far. I will continue to follow if You promise to show me the way.


In your Son Jesus' name,
Amen.

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As eerie as some of the words seem to me now, there is so much comfort in looking back with the perspective that God has given me. Let us remain faithful even when it feels like hope is failing us. I desired to remain faithful no matter what. I will continue to follow if You promise to show me the way. I promised to follow God and let Him lead the way.

“I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

~ John 8:12

"I urge you to live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing with one another in love. Make every effort to keep the unity of the Spirit through the bond of peace."

~ Ephesians 4:1-3

Raising Awareness

Earlier this week I heard someone say "it's amazing the difference a year can make."

It really is QUITE amazing.

This week has been incredibly emotional for me. It was exactly a year ago today when we went into the ultrasound appointment that ROCKED OUR WORLD in a very scary way... we learned at that appointment that our baby would have a cleft lip, and you find out a little more about the days that followed HERE. It's crazy to think that a year and a day ago we were so clueless to what was about to happen and how our lives were about to be significantly changed.

I haven't been the same since that fateful appointment, and we didn't even know the full extent of her diagnosis until days after our daughter Lucy was born months later. I think in some weird way we honestly expected to go to the follow up appointment (which was 2 days after the first ultrasound) and have them tell us "oh, wait, we were wrong". But no, that did not happen... and this week last year was a nightmare - filled with fear, sadness and anger. We were in serious denial, and had so much fear for our baby and what this cleft meant. Do you know that just two days ago a women from my bible study told me she was born with a cleft? I mean, what are the odds... Seriously? I just "happen" to find this out this week? It was like God gave me a snapshot of what Lucy's life might had been like. This sweet woman expressed how tough her life has been in and out of surgeries and how she struggled with the notion of even having children because her chances of having a cleft baby were so high. I know Lucy's life would have still been tough even with "just the cleft." Really tough. But we would have had her to hold.

Now it has become important for me to raise awareness about Trisomy 13, and Trisomy in general. Honestly the more I have connected with other moms that have had Trisomy babies or babies with other genetic disorders, the more I realize that "1 in 10,000" is not as rare as you think!

Well, wouldn't you know...

March is Trisomy Awareness Month.

I can imagine that many mothers feel pressured to terminate pregnancy if they get a prenatal diagnosis that includes birth defects, especially when that diagnosis is "not compatible with life." Most probably don't even realize that there is a chance they will meet their child. Lucy's diagnosis was "not compatible with life"... but Lucy lived almost 6 days! I remember reading the description of her condition in words the night we received her diagnosis, when she was still living and breathing before us. She LIVED, yet those words told me she could not. I feel the need to speak out and protect babies like Lucy, and I have come to believe that "if you have a pulse, you have a purpose." Though I would not judge someone for their personal choice, it makes me so sad that some parents would say goodbye to a baby like Lucy before they even got the chance to meet him or her.

Meeting and losing Lucy was truly heartbreaking... but I am filled to the brim with joy to have known such a special little girl and be able to call her "mine."

Here are some facts about Trisomy 13 / Patau Syndrome:

- Trisomy 13 is a genetic disorder in which a person has a third copy of material from chromosome 13, instead of the usual two copies. (Trisomy 18 is similar, but it affects the 18th chromosome. Down syndrome is the most widely known Trisomy - which affects the 21st chromosome. Defects tend to be more severe the lower the number, from my understanding.)

- Approximately 80% of Trisomy 13 babies have a "full trisomy" where every single chromosome set is affected (this is what Lucy had).

- Approximately 60% of Trisomy 13 babies have a cleft lip and/or cleft palate (Lucy had both).

- Approximately 80% of these babies have a congenital heart defect (Lucy had a more "minor" heart issue, which was not seen prenatally. They said it was something that normally would not have affected her until much later in life).

Much of the above information and more can be found here.

The two websites below are ones I have found helpful both for the information/resources and for the stories of other families going through what we have:

www.trisomy.org

www.livingwithtrisomy13.org

Recently I was made aware that presidential-hopeful Rick Santorum and his wife have a Trisomy 18 baby, Isabella. I realize that when that news hit the general media, most people were hearing about this chromosomal disorder for the very first time. A year ago I would not have known the first thing about Trisomy. This video was posted on his blog, and definitely touched my heart. Here is an article the NY Times posted after a more recent health setback. What a special little girl she is! I am just inspired by someone so much in the public eye raising awareness.

Despite hearing inspiring stories and connections with other families, the obvious fear for us is that something similar happens again with another baby. I am sure many wonder if Jeff and I are more likely to have another baby with Trisomy 13. The answer is, not really. The doctors may say our risk could be considered increased only because we did have a baby with the disorder, but the chances are still very, very slim. We do not carry any genetic material that was responsible for the Trisomy. It was random. Regardless of knowing that, does worry still enter our minds? OBVIOUSLY. But then we think about what a blessing Lucy has been to our lives and will continue to be in the life of her big sister, Avery. And I think about the simple fact that Avery is healthy, happy and HERE with us on this earth. She is my proof that we can have a non-Trisomy baby, yet she also confirms to me that Lucy was not a mistake on anyone's part. Just as Avery was meant for us, Lucy was meant for us - all of us.

Each baby is 100% unique and special. If God chooses to leave our family just as the four of us, we will be just fine. Any way, it seems strange to consider "planning" for anything when OUR plans got thrown out the window ages ago. Yet, I look forward to what God has in store for us.

Finding Hope

What is HOPE anyway? I'm not trying to answer that question today by any stretch, but I like the first definition of hope in Merriam-Webster dictionary:

HOPE - to cherish a desire with anticipation.

But I like the definition several lines down more - to TRUST with CONFIDENCE.

Of course, we can try to bottle up the concept in words, but hope is a feeling, a belief.

And feelings are so very hard to describe.

Christmas is now past and the beginning of a New Year is days away. 'Tis the season when we find it appropriate to talk about hope. But it shouldn't be the only season. Hope is all around us, in our daily lives, even in what seems to be the least hoped-for situation. Finding God through the tough times and believing can often be the difficult part. He's there regardless. Hope is there to be found. We may just have trouble seeing it and believing it. We may "cherish a desire"... but do we "trust with confidence"?

I see perfectly healthy babies being born all the time and know many friends getting pregnant. Healthy babies come along every single day. I should have hope. But after losing Lucy I feel like I've become somewhat of a skeptic - for someone who has always tried to see the positive side of things, I'm on the opposite side of the fence for once. It's challenging.

I constantly, daily, roll around different scenarios in my head. I feel guilty in some way that I didn't get the genetic testing done during my pregnancy with Lucy, that I didn't know the sex of my baby before she arrived, and that we hadn't even settled on a NAME. (For heaven's sake, for half of the pregnancy we assumed Lucy was a BOY). There was so much that happened in her short little life. So much hope, and then so many shattered dreams. Moms tend to question themselves entirely too much as it is. I don't even have my sweet Lucy by my side and I'm questioning if I was a good mother to her. I feel as though I lacked in planning for our little miracle baby. We weren't equipped with all of the knowledge that was available to us. How could I have done that?!

At times I have felt a little strange talking about Trisomy 13 - not many people know what it is. Or, if you've heard what it is, you try not to think about it... because you think "oh, that wouldn't happen to ME." I have gone through phases where I've felt ashamed or embarrassed about it and thought "How could this have happened?" All the doctors say it's nothing I did, and additionally my faith says that it's all in God's plan. I know what I'm supposed to believe... but I can't help still thinking that I could have changed it. I had hoped for the best.

This week a friend of mine passed along the blog of the Green family who had a baby girl, Hallie, this past Monday before the holiday. Hallie was born with full Trisomy 13, just like Lucy. The Green family's story about baby Hallie has been truly amazing for me to see. I can relate to the story from the inside because we've lived something similar, but I'm also very much seeing things from the outside looking in.

I am so very glad that The Green Family has openly shared their story about Hallie and Trisomy 13. Hallie was diagnosed prenatally and her parents accepted her whole-heartedly and gave her a chance - this chance - at life. I was just devastated to hear that her sweet, short life came to an end on Christmas Eve. Another sweet angel gone home to be with Jesus. Her story is a beautiful one full of love and hope, and it's still unfolding as this family mourns her loss. Seeing the LOVE that they experienced by her very presence gives me faith that is indestructible and hope that is eternal. It's a sad story - it's heartbreaking. But I have hope. I believe that little Hallie's story will continue to change lives.

If I had to do it all over myself - the pregnancy, the testing options, the time in the hospital with Lucy - I wouldn't change a thing. As much as I can doubt and question myself, I know everything was exactly as it should have been. I run through the scenarios if we'd chosen a different path at different forks in the road. But that isn't what happened.

Our story is just that - OUR story! Lucy's story.

A parents love for their child is built on HOPE. Hope for our babies. It doesn't matter if we got the genetic testing done during pregnancy or if we knew as much as I could possibly know about Lucy. We gave her a chance. We chose Lucy. We had hope in her, and ultimately had hope in God's plan for her. And she fulfilled it with the beauty, grace and love that was her purpose. I can only hope to do that much in my lifetime.

I will never be able to describe hope in words.

But hope is the future. And despite our losses, the future is hopeful.

Find the Green Family here.

I encourage you to surround this family with prayers.

They will need them.

Chosen

Have you ever felt really thankful for and proud of being chosen for a special task or purpose?

I am so thankful and proud that God CHOSE us to parent one of his treasured gifts - a girl named Lucy. I'm so happy about it, that I'm almost past sad. I know that makes me sound "strong" and I'm not always "strong," but even in my weak moments I'm still thankful and proud.

It's hard to believe that today would have been Lucy's 12-week milestone. I would have been going back to work, wrapping up my maternity leave. My, my... it really hasn't been that long since she was born, but yet it seems like another lifetime ago in many ways.

I was remembering the other day a very real moment that I had with Lucy when I was still pregnant. Don't ever want to forget it. I was in my prenatal yoga class, and our instructor was reading a passage from a book. Suddenly I was overwhelmed with love. Lucy was moving like CRAZY inside my big ol' buddha belly and I felt so proud. I also felt DETERMINED to be the best Mama I could be to my baby, no matter WHAT. I was overcome with celebration of the little life growing inside of me. I took time to appreciate the miracle. (And, I know I've had two babies now, and maybe I shouldn't be so amazed... but it still BLOWS MY MIND that my body can grow a baby. Maybe it's just me, but, WHOA! Honestly blows my mind to think about. Everyday Miracles).

Talk about chosen! Every fiber of my being was chosen.

And I was up for the task; up for fulfilling my purpose.

I felt it in that moment in my bridge pose, and I feel it now.

Cleft of the Matter

It's all about perspective sometimes.

As you may know, when I was pregnant with Lucy we found out at my 20-week ultrasound that she had a cleft lip. I still remember the moment that they told Jeff and I that our baby had a cleft. And I am now thoroughly embarrassed and ashamed of how superficial my initial reaction was. I was concerned about the medical aspect, sure, but I was DEVASTATED over the physical aspect. I felt vain and superficial, but I just couldn't picture a baby with a flaw. MY baby with THIS flaw. To put it simply... I was FREAKED out.

After a follow up ultrasound and confirmation, we slowly started wrapping our minds around the "cleft of the matter." The cleft was a fact. It was there, and there was no changing that. We opted out of the genetic testing because it wasn't going to change anything we did, and we focused on educating ourselves on what we knew for sure. We were going to be parents of a cleft baby, a sweet, innocent little cleft baby. Do you know a cleft is actually a more "common" birth defect? I connected with so many parents online that were going through what we were going through! And as we started hearing other stories and learning from their experiences... it became easier. We gained acceptance.

Two cool things I learned about the community of people raising cleft babies during my pregnancy is that, (1) they are a big family, sharing tools and tips. I connected with many, many of them in an online group on www.babycenter.com (thank goodness for the internet!). (2) there are SO MANY resources here for cleft babies. We are so lucky to have wonderful doctors and programs here in the United States to support families going through this challenge. By far, though, the best part about these families I connected with? They saw so far beyond the cleft that they hardly saw the cleft at all. Their love for their child was evident no matter how severe the cleft was or how challenging their cleft-related issues were!

Then there was Lucy's cleft. When we met Lucy, her beauty was still very evident despite this "flaw." In fact (I've said it before and i'll say it again), the cleft was actually a major part of her beauty and uniqueness. It gave her whimsy and charm. It made her "Lucy." If the cleft had been an isolated issue, it would have been nothing. NOTHING. Totally fixable, doable.

Of course, in Lucy's case the cleft was related to her Trisomy 13 condition. It wasn't "just" the cleft. When we started realizing there was more to her condition, our focus changed significantly. I have learned a lot about Trisomy 13 since her birth. At this point I have actually even gotten the amazing opportunity to connect with another mother of a Trisomy 13 baby here locally. (The condition is quite rare, so the fact that I've connected with someone this close is a huge blessing!) And what I've realized in thinking back on all this is... I can't believe that we were that worried about the cleft!

I just keep remembering how TRAUMATIC it felt when we received the news of the cleft in our ultrasound. We were broken down and started having pity for ourselves over what our child (and whole family) would have to go through with surgeries, possible feeding issues, developmental delays, emotional and psychological issues, etc. I even worried that I would not love my child the same - that I would feel different somehow. Wow, now I'd give anything in the whole wide world for our sweet little cleft baby. Anything for it to have been a condition that we could have fixed. How we wish it was "just" a cleft.

And, shame on me.

How could I have questioned for a moment that I wouldn't love this baby the same?

I did.

I do.

I will.

Always.

The Real World "post-Lucy"

With today marking the 10th anniversary of 9/11, I've been thinking a lot about life and how a single tragic event can change the course of your life and offer perspective. I remember how people CAME TOGETHER after the world trade center attacks. It was truly moving. And still is. It's the good that comes from a bad situation.

After the initial shock of a tragedy, you start coming out of the fog, embracing you new life and your community. Differences with others may melt away. Hugs are more sincere. Conversations are more meaningful. You tend to appreciate what you have more.

After spending many weeks after Lucy's death in a complete state of shock and wandering around looking at the world through some very foggy vision, I'm feeling a bit more... "normal." I'm still in a great state of sadness, but I also realize that I must move forward. I keep dividing up my life experiences now into "pre-Lucy" and "post-Lucy" phases. My life seemed to freeze for a period of time and she has changed us forever. Lucy will never go away. Her presence will be felt in all I do. My real world experiences are quite different looking through "new" eyes, listening through "new" ears, talking with a "new" tongue and processing with a "new" brain. The world is profoundly different. No, I'm different.

It's tough finding the strength to tackle the real world post-Lucy at times. Some days I absolutely DREAD it, but I know that I need to get out of the house and resume normal activities slowly. Some days I'm up for the challenge and like to stay busy, other days I have a very difficult time with even the simplest tasks/errands. I feel like everything I do has the potential to turn me into a brain-numbing zombie or an emotional wreck.

For example, I went to the grocery store one day. There I saw a woman with a sleeping baby strapped to her chest. She had this beautiful motherly glow, a calm peaceful smile on her face. Normally I'd smile and tell her how beautiful her baby is - he was! But I just stared at her. She looked at me and her face showed her pride - her pride and love for her new baby. I hope I smiled. I might have actually looked like a deer in headlights. No idea. All I know is that I couldn't help but imagine how I would have been feeling right then if I had Lucy strapped to me. The girl behind the deli counter proceeded to ignore me to come out and fawn over the baby. I watched as they shared this special moment. I was almost mad - that was supposed to be ME holding the baby. It should have been MY baby being showered with attention. But, I had to remind myself not to take this personally and to calm my thoughts. There was certainly no way in the WORLD they could know I lost a baby just a short time ago - and thankfully I was wise enough to know that it would be beyond strange to offer up that info. Though I felt confused, sad and jealous at the time... I also later noted that (oh joy!) I still am capable of being happy for others. I understand that beautiful feeling of being a new mother. For that understanding, I am very blessed. I don't want to take that for granted.

What is more difficult than these types of encounters with strangers?

Running into people who know me, who have no idea what happened.

I was pregnant for NINE MONTHS... now I'm not. I went to my follow up appointment at the OB's office 2 weeks ago. There I saw one of the nurses I had seen throughout my pregnancy who came up and asked excitedly, "How's the BABY?" I had somewhat tried to prepare myself for the first time this was going to happen, but for some reason I just froze and said "She DIED." Nothing else. Why I stated these words in such a raw, crazy way I have no idea. The poor girl of course felt AWFUL, and we both burst into tears. Now looking back on it and experiencing it more here and there, I know IT DOES GET EASIER. Not EASY, but easier.

Hi-Ho, Hi-Ho, it's back to work I go.

I am now officially back to work. It's scary. It's weird. But, it's good too. I just feel so different sometimes, like it's an out-of-body experience just to be there trying to sell advertising. Then other times it feels so normal and comfortable that I end up feeling guilty - like I'm moving on too quickly. I imagine this is a normal part of the grief process. But it's just odd.

I am reminded that the absolute best part about my job is connecting with fabulous people all day long. I'm close with a great number of people (co-workers and clients) that I have worked with for quite some time. I am truly feeling the warmth of love and compassion. I am right where God needs me to be.

I'm also experiencing healing in talking about Lucy. You know what I realize more and more every day? I LOVE to talk about her. And if I ever had qualms about bragging about my kids before, I have no problem with that now. Absolutely no problem. Lucy was AWESOME. Avery is freaking amazing. A-MA-ZING. Ask me about either one of them... but be prepared... I may be in the mood for some bragging or, if you get really lucky, TMI. We're potty-training, after all!

So, that's a little snippet of what I've been experiencing lately. I knew that learning the "new normal" would be strange, and now I can confirm that it sure is. But it's becoming do-able, and that's a good thing.

Special Treat with Extra Toppings

Yesterday I sat down to write a note to Lucy's doctor and one of the nurses that touched our lives when Lucy was in the NICU at CMC. I knew I had wanted to do it, but I just hadn't been able to bring myself to do it yet. I almost didn't want to resign myself to it because I felt like it meant I was closing a door, a chapter of my life.

But, they needed to know how we felt. Through the care we received from the staff there in the hospital we knew God was with us and it became clear that this series of events fit (though somewhat tragically for us at the time) into His bigger, master plan. Not that God CAUSED Lucy's death, but that he may have allowed it in knowing it was serving a bigger purpose. It was so clear it was a part of His divine plan by the smooth, peaceful way the events flowed - nothing felt "out of order" as it was happening. Sad, but not "out of order." That's the only way I can find to describe it right at this moment.

The first thing I want to point out is that throughout my pregnancy I prayed a lot. And at some point I started praying very earnestly that God would provide all of the care we needed for our child. That he would put all of the right people in the right places at the right time. I believed that He would, and He did. Jeff and I literally would look at each other at certain moments in the hospital with Lucy where someone would just walk into the room, say one thing we needed to hear and then walk out - true "Godsends." God sends. Yes, God sent people in this case - the RIGHT people. He promised He would provide.

Some of those people were there throughout the course of our journey...

Dr. Andrew Herman was the doctor who initially received Lucy into the NICU. He walked with us throughout her stay there. The day he admitted her to the NICU, he came to my hospital room and told me that Lucy was a "special treat with extra toppings." None of us knew what those extra toppings were at that time (he also said "I deal with a lot of VERY sick babies, and Lucy is not a VERY sick baby"), and none of us could have known yet how serious they really were. We also had no idea how much of a blessing our sweet girl would be either! Throughout Lucy's time in the NICU Dr. Herman was there to give us crucial updates and deliver her diagnosis. He was also there when Lucy took her final breaths. He even heard her sweet sighs during our final night with her. (Without him asking if she was trying to coo I would have thought I made it up in my head). I said to him at one point... "Do you ever go HOME?" He was with us every step of the journey it seemed. He was the first person to remind us of God's plan in all this when he said "I do NOT believe in chance." Yup, Lucy was meant to be ours for a short time, but ultimately she was God's. After he delivered Lucy's diagnosis, he reached for our hands and prayed with us. We knew we wouldn't have Lucy long, but he reassured us that she was going to be ok, telling us "Lucy is innocent in all of this. She will have a front row seat in heaven."

Lucy's nurse Amy Copley was amazing. She was with Lucy for two full days, Thursday and Friday - before we got Lucy's diagnosis. She was so caring and sweet, genuinely celebrating each of Lucy's small victories with us. Whether it was the fact that she handled the testing well, or held her oxygen levels through the night, she rejoiced with us. She called us with a sense of pride to tell us when Lucy cooperated well through the spinal tap testing she had to endure. Her dedication and thorough care was so apparent to us. She was also there with Dr. Herman as he delivered Lucy's diagnosis, crying with us and comforting us. I felt her genuine devastation for our family. We didn't see Nurse Copley over the weekend, but it just so happened that Amy's next shift was immediately following Lucy's death on Monday, July 25th. She helped us get footprints and handprints made and bathe Lucy's sweet little body, more of a ritual for us then anything. It did provide closure in some way, but Lucy was already gone. By the way, I should point out that handprints/footprints are not easy to get - I actually was able to laugh in the moment imagining Lucy looking down from heaven thinking "Mom, you are terrible at this," but also hoping that she saw how much I cared! Just having Amy's presence with us throughout the journey was a huge blessing.

Other people we came into contact with were there in very key moments, providing clarity through confusion...

Lucy's nurse on Sunday - Georgia. In a moment of pure confusion when we took Lucy off the ventilator, Georgia was the nurse who encouraged us to get Avery up to the hospital immediately. I think she sensed the final moments were upon us and knew we needed time as a family. I had hesitated knowing Avery would have to be woken up from her nap and Georgia reminded me I wouldn't get these moments back. We called. We needed Avery there. My mom woke Avery up, luring her with a cookie to hurry her along. That was the day we got to spend as a family with Lucy - her final full day here. I am SO glad that someone was there to make sure Avery was with us. I was so focused on Lucy that had I forgotten to get Avery up there, she would have missed so much. Now because of Georgia's advice we have a lifetime of memories from that day and we will be able to tell Avery stories time and time again. (Avery and I just giggled last night about how she kept trying to lick Lucy's head - silly girl!) Jeff and I also got to wrap our arms around both of our little girls - together, at the same time - a real-life family of 4! It truly felt like it that day. So thankful. When I thanked Georgia later that day, she told me that she had lost a baby at 22 weeks and she remembers the confusion of it all and how she just needed people to tell her what to do, to think for her when she couldn't think for herself. So you're saying God uses our life experiences to help others? Uh-huh. And do we think it was a coincidence that Georgia just happened to be the nurse with us that day? NOPE. To think that we may be that voice to someone else one day and provide that kind of insight is pretty amazing.

Honestly, I don't remember what her title actually was... but I remember Cindy. She seemed to be all over the place and kept continually checking in on us that Sunday that we took Lucy off the ventilator. The one thing I remember clear as day is that she came in and delivered advice to us when we needed it. We were debating if we should stay or go from the hospital on Sunday night, and since Lucy had done fairly well off the ventilator, we were almost feeling that we should go home and just get back as early as we could the next morning. That everything would be fine. I think I knew in my heart of hearts that we needed to stay, but I needed a clear message... it was all very confusing and I couldn't make a decision. Cindy came in as we were talking about it. There was just this giant PAUSE in conversation, and Cindy quietly asked, "Can I give you some advice?" I nodded desperately, thinking, 'Yes, PLEASE, somebody somehow tell us what to DO.' And she said calmly, "I think you should stay tonight." I think I was waiting for God to make it clear what we needed to do and it was VERY crystal clear through her advice. Thank you for that message - we heard it. Lucy passed away deep into the night, as Sunday night peaked to Monday morning. We got precious hours with her that we would not have gotten had we not stayed.

...

Lucy's life was short and that seems unfair. But when I watch Avery get pushed over on the playground, well, that's not fair either. Lucy will not have to experience the hardships that life brings. She won't have to endure the many surgeries that would have been headed her way. What she experienced in her little life was pure, unconditional LOVE and exceptional CARE. When I think about that, it makes me so joyful.

Lucy was truly our "special treat with extra toppings." She will never have to know anything different. And we will never know anything different either. So add another scoop of sprinkles to my ice cream, and add a drizzle of hot fudge, too. I like my treats with the extra toppings!