March 3, 2006. It was a Friday. I went into the hospital a wife, daughter and a woman. I left as a mom to a tiny 4 pound, 6 ounce baby girl. We named her Isabella Grace. We always intended to call her Bella. She was delicate, beautiful and and so incredibly vulnerable. Instantly, she was the light of my life. I never could have dreamed that she would teach me the most important lessons life has to offer. Some of them are listed below. 

There are no promises in life. Your life plans don't always match your reality. It's often out of your control. 
Parenthood brings joy that knows no bounds but it also can shatter your heart and shake you to the core.
Being a parent to a child with special needs and complex medical conditions shows you resiliency you never know existed. 
A child's intense work toward delayed milestones is a privilege to behold. I stood in awe. I bow to her tenacity. 
Parenting makes you love fiercely and instantly with no conditions or expectations.
Being Bella's mom required me to advocate for her each day, fight hard and stop at nothing to be sure she had what she needed. 
I learned that physical, occupational, speech therapists and special education teachers are superheroes. 
I learned to tell doctors to do more, work harder, find answers, and think beyond the boundaries of their abilities. 
We became super nimble. Plans changed instantly on a daily basis when seizures or sickness reared its head.
We could troubleshoot in the most creative of ways.
We learned to pray fervently that she would live, thrive and be happy.
We stopped at nothing to keep her healthy. 
We held her close and treasured every moment because tomorrow is not promised to us (we just think it is). 
And just shy of 7 years later, the hardest lesson was learned: Loving your child sometimes means you must let her go. In this case, Bella's bones and lungs would not heal and it was time for her to go to Heaven.
And another lesson - In the midst of terrible sadness and pain, miracles occur.

It took years for me to heal from her death. I didn't just lose her. I had to let her go. I had to make the decision and take the action to let her leave this earth and go to Heaven and shepherd her through that process by holding her for hours before and after she passed away. It was the most excruciating parental task I could ever undertake. It still haunts me but I have come to terms with it and I no longer feel guilty for letting the doctors turn her oxygen off so she could go to Heaven.  

This year Bella would have turned 12. She has been in Heaven as long as she was on earth. My nephew wanted to talk to my son about her birthday tonight and how she is celebrating in Heaven. My son sighed and said, "I'm just not ready to talk about it today. It makes me sad." My nephew said, "Don't let it make you sad. Let's celebrate her life." 

My nephew always cuts to the chase with the most honest, innocent statements. Yes, let's celebrate her life. We miss her every day and especially on these special days of hers. She was a darling, lovable, beautiful child who touched hundreds of people in her all too brief life. She was always up for hugs, kisses, cuddles and laughs. On the worst day, you could depend on Bella to bring joy to your heart. She's in a wonderful place full of love and free of pain. I am ever grateful that I was the one who received the gift of being her mother. I would do it all over again. She was my firstborn, my only girl and my dream come true. 

Happy birthday Bella. We love and miss you. 

Mother Theresa said, "Some people come into your life as blessings. Others are lessons."

And Sting said, "How could it be that what you need the most could leave you feeling just like a ghost?"

And Mick Jagger said, "You can't always get what you want. But if you try sometimes you just might find...you get what you need."

I recently had the experience of learning that one of the people I treasured most in this world was not who I thought. It shakes you to the core and leaves you wondering -- in the future, how do I see this more clearly? 

It wasn't what I wanted. But it was what I needed. 

Life is funny that way. 

This summer has been one of the most challenging ever. As I have been working my way out of the sadness that Bella's death brought, I got stuck. It's been 4 1/2 years now and in May a life event catapulted me out of what I now see was a semi-permanent funk. As difficult as it has been, I am grateful for it. I didn't realize how much life I had been missing. 

So, emerging from a long state of sadness where you lost your energy, your will power, your social nature and your...self, has consequences. This summer has been one of intense reflection and realization. As I have focused inward on myself, my son and work (the basic survival must haves), I neglected things that were extremely important to me. In no particular order, my health, my friends and my loved ones. I just put them on autopilot for years and I have had to take a hard look at what that means now. 

The friends, gratefully, are the easiest place to reconnect. Friends are truly amazing gifts. Mine just welcome me in and out whenever I need them. But I find myself in a different place now that our kids are not babies. The friends I like to hang out with are really hard to schedule. They have multiple kids who are all involved with sports and are busy all the time. I need to really amp up my diligence in reaching out to them and scheduling time. And I need to make new ones who aren't as busy and can hang out on weekends when my son is with his dad. 

So, with wisdom and experience in my rear view mirror, we are forging ahead with fresh eyes and hearts. I feel like Sleeping Beauty waking up again after years of being in an emotional coma. I feel alive again. Things hurt deeply again. I can get excited about life again. In a way it feels good -- these emotions make me feel alive in a way I haven't in years. And I know there is joy on the horizon. And for the first time, I do not feel guilty about being alive and happy. For the longest time I felt like I shouldn't feel happy without Bella. Now, I have peace that I should be happy and can be happy and most of all...she would want me to be happy. 

The pain of losing her will always be there. But it's a pain that is born of deep unconditional love that a mother has for her child. And it is sacred to me. It is all I have left of her. But it shouldn't overshadow all that is left in life. That's a huge step to realize that I can always miss her and still be alive and happy. 

I have so much to be grateful for including this painful summer which has brought self-improvement in so many ways. I am grateful for those who have loved me through Bella's life and death and have patiently waited as I wasn't the best version of myself. I am grateful to God and for spiritual growth. And I am grateful for my son, who is blossoming into such a lovely, fun, energetic boy who will enter fourth grade in one week from tomorrow. 

I may, finally, be finding the new version of myself and all that it brings. I am stepping back into life to welcome whatever comes next with a vulnerable, open heart and a brave soul that has lived through a tragedy, learned from it, and is ready to move forward. I survived it. It was messy, full of mistakes and often lacking in grace - but I made it through to the other side with a happy son, a faithful dog, and loved ones and friends who mean the world to me. 

The promise of a brand new year brings so much renewal and optimism. How do you make that feeling last beyond the doldrums of January?

I always make resolutions that are typically abandoned before Valentine's Day. Mine usually revolve around weight (loss) or exercise. I have an unused treadmill and a half eaten bag of chips to demonstrate my success on these goals.

In 2015 I made one resolution only and I kept it!. The difference was I chose something I really wanted to do – see my sister and her kids more. Guess what? I kept that resolution. She helped me. We visited six times and vacationed together. It was amazing and it brought me, my sister and our children so much joy.

JOY.

Maybe that’s the secret? Choose something that brings you joy. Cutting out sugar entirely and running 3 miles a day are things I need to do, but they don’t bring me joy. Health, yes. Joy, no.

I like setting a goal. I want to have faith in positive change for myself – and the world. Last year’s resolution was something that would bring me undeniable happiness and unforgettable moments.

For 2016. I chose a few resolutions that should bring me joy and fit into my daily life.

Call my relatives more often and challenge them to call me more too. Since Bella died, I have been in my protective cocoon. I need to emerge. Family is important to me and I want them to know that.

Connect with a friend (one I don’t see every day) at least once a week. I get caught up in the daily grind and I don't plan outings in advance. I miss them. Since we are all busy, the goal is to connect via any form: a meaningful email, a call, maybe a visit if I’m really on my game. I should be able to achieve this one.

Read the Bible and discuss it with some female friends. Since Bella died, my faith has brought great comfort to my soul. Yet, I am not educated in my faith. I am hoping that reading the Bible brings me joy, knowledge and a way to teach my child about our faith with more confidence than I currently have. I want to know more. I want to be closer to God. I downloaded an app to guide me and found a few people to join me.

Are New Year’s Resolutions important to you? Why? If you set resolutions this year, what were they? How do you plan to weave them into your life all year?

Life begins and life ends, and in the middle is a sweet spot of memories you make that you hold in your heart forever. If I am lucky, I am right in the middle of life now. I look at things differently and I value them differently as I move from decade to decade. The issue on my mind this week is the importance of grandparents in a child's life.

My son is on his annual trip to Grandparent Camp in the heart of Texas on my dad's ranch. Every year since he was an infant he goes to Texas in the summer and stays awhile. He absolutely loves it and it is a trip that we all treasure. It's good for everyone. My dad and stepmom treasure the time with him, he loves every minute of it and my fiancé and I enjoy the extra time for ourselves.

For my son, it's a chance to learn about nature and enjoy it. We no longer live in a world where your kid can run out the front door and play outside unsupervised for hours on end but at the ranch it is a mandatory activity. There are few pools you can find with diving boards these days but at the ranch you can cannon ball off of the diving board 80 times in a few hours. There are vegetables to harvest, hundreds of acres of land to water and animals to discover (Armadillos, axis deer, wild turkeys, owls, foxes, bats, skunks and rabbits all roam the land). There is a herd of longhorn cows to feed, rocks to throw in the Guadalupe River, weeds to pull, and tennis courts to ride your bikes on. In quieter moments he sits on dad's lap and just rests while watching hummingbirds after a long day of ranching. There are no iPad or game requests. There is no need for TV. He is way too obsessed with real life, old school style.

It's not just my son who reaps the benefits of these days. It's an incredible joy to see the effect this trip has on my dad. For a really long time my dad never aged. In recent years a few health issues have set in and though they are manageable it is a stark reminder of the preciousness of time. Nothing brings more joy to my dad than time with his grandchildren. My son, more than most of the kids who visit the ranch, wants to hang with my dad and be a ranch cowboy. They are summer sidekicks who work the ranch all day and that bond between them is one that I hope my son will always remember and treasure. The moments, captured in pictures like the one here, stop me in my tracks to consider the value of this time. I try to tattoo the memory in my heart and brain to help it remain fresh over the years.

Every year my dad and stepmom teach him things we need him to know. In past summers it was how to use the potty, how to ride a bike, and how to swim. This summer they are teaching him phone manners, keeping his emerging math and reading skills intact and sharing some basic lessons on how to drive the Mule (sort of like a golf cart that you drive around the ranch).

It's hard to get used to such a quiet house back at home. I miss him but there is no substitute for the kind of experience he is having with his grandfather on the ranch. And it's enormous fun to hear the stories of their ranch adventures and the things he is learning. Here's a snippet from last week:

"Mommy, we saw the baby calves today. We looked to see if they had weenies and one does! So that one is a boy. We saw the mommies feed the babies. I also saw a skunk spray but he didn't spray me. We did a rain dance and it worked. Last night it rained! I got to drive the Mule! Also, I saw an owl and a bat and I walked out on the porch and there was an axis deer RIGHT THERE!"

Such tales bring my heart joy and I can hear the sheer happiness in my dad and stepmom's voices. They teach him good manners and the importance of being a strong leader, following the rules and the importance of sticking to the rules that you know when you find yourself in a situation where the rules are unclear. They are building his character. In the summer before first grade, it's a critical time to understand these lessons.

As I have posted pictures I have received numerous messages about how lucky my son is to have a grandparent who is willing and able to spend this kind of time with him. That's very true. My son has seven grandparents. They all love him deeply and spend time with him. But there are limits to their time with him and the places they are able to experience. In my own life I had one grandparent, my Maw, who left a tremendous impact on me. She lived the longest and was more fun than the rest of my wonderful grandparents. When we were little we cried when she would leave. In later years she helped me understand and navigate life all of the time. We lost her in 2012. She died two days after I visited her with my children. It was as if she hung on long enough to say goodbye to us. I like to think of her and sweet Bella having tea parties in Heaven.

This week a dear friend lost her mother. All week I have thought of her and her children who are old enough to cherish a relationship with her and form lifelong memories with her. The love of a grandparent. is irreplaceable.  I'm always thankful for the gifts my son's grandparents give him but never more so than this week as I receive precious memories in the form of pictures and stories and as I talk to my son at night and cant get a word in edgewise because he has so much to share with me. In a week where one of your best friends is saying goodbye to her mother, it's impossible not to want to cling to these moments. As our parents age and become frail, we will someday care for them. In some cases we already are. One day we will have to say goodbye to them. In the meantime, one of the greatest gifts we can give our parents and our children is the benefit of being together and bringing joy and wisdom to each other. I'm not even offended that my presence in this picture is not needed. I know they love me and they will be excited to see me again. They're just having too much fun to miss me. And that is lovely.

In the midst of my busy workday, I received this text from my fiance: 
 
What should he wear to T-ball practice? He’s in a Darth Vader costume
right now.

 My boy. The one who graduated from kindergarten today. The one who is
quickly developing a love of Star Wars, light sabers and who alternates between the dark side and Obi Wan Kenobi. His summer has begun. Soon he will be a first grader but first there are many adventures to be had, beginning with an epic intergalactic battle with my fiancé. 

I check Facebook and I see the faces of so many of my friend’s children on their last days of school. Such sweet faces, ever maturing. In my mind they are so much younger. It’s the reminder of how quickly the years pass.

 And amidst the smiles, the congratulations…that unwanted feeling tugs at me subtly at first and then glaringly. It’s there…lurking. Like a snake it sneaks up on me and grabs hold. Grief. Sudden and harsh, the wave hits me…the tears spring forward and I fight them back. Then I declare defeat and I let them go. 

Bella. My sweet, beautiful girl with the pink glasses, gorgeous wavy curls and adorable laugh. The one who held my hand and loved cuddling. 

Sometimes I cannot believe she is gone. She would be wrapping up second grade now if she were here. I look at my son and I see her. The same hair color, the same beautiful eyelashes, the same soft snore and the same crinkled eyes when they laugh hysterically. I see her in him today and I just miss her so much. 

It was an emotional day. My son’s last day in his school. Next year he will go to a new one and we left our safe place where he has learned for 3 years. This was the place we made wonderful friends, learned so many things and where they held us tight when Bella died. It’s difficult to let go. I know we will keep these friends. They are dear to us and we will make sure we carry those friendships forward. It’s just a bittersweet moment in time where you’re excited to move forward and yet moving forward means you have to let go. Change used to be easy. 

After dinner he asks if he can go watch Star Wars and play a bit more and I say yes. He hates it when I cry and it’s a little chance to let some pain out without him seeing the tears. I go upstairs, flop on the bed and let the tears go. But I am not alone. He knows me too well. And soon, he comes looking for me. Not Darth Vader – he’s still downstairs. My fiancé. He knows me so well. As he has done so many times, he holds me tight and lets me cry. And then when he senses an opening – he cheers me up. 

“Can I tell you about my day? We played Star Wars. He had his giant light saber. He let me use a tiny knife. He asked me to play with him. He was wearing his costume and he said – You stand there and I will cut your hand off. Then you should fall down. So I did all that he asked me to with full drama and then do you know what he said?”

 I said, “No, I cannot begin to guess.”

My fiancé continued: “Then as I dropped to the floor in pretend pain he says – that’s the wrong hand. I said – the wrong hand? He said yes. You should use the other hand. So I did. I tried to fight back with my tiny sword and he told me – No! You can’t touch Darth Vader. Not allowed. I told him there were too many rules and to let me know when he wants to really play instead of just ordering me around. Then he said – OK, well, you can touch me a little bit with the sword but not much.”

This whole exchange made me laugh. The vision of my fiancé being ordered around by my 6 year old. Then they re-enacted the whole thing for me tonight complete with my son’s elaborate ninja poses. It made me laugh. 
 
As I put my sweet boy to bed tonight I asked him who he was. Darth Vader? Luke Skywalker? Han Solo? Obi Wan? He said, “I am DEFINITELY not Han Solo! He was destroyed! They turned him into gold.” Then he immediately fell asleep with his light saber attached to his pajamas. As I tucked him in, I just stared at him. My boy. Growing up so fast. 

When one part of your heart is in heaven and one is on earth, you know how precious this moment is. I find myself staring at him and beyond him. Watching him and remembering Bella. Feeling grateful for the experience of being her mother and
his. It’s a feeling that I will never get used to. The dual existence of grief and laughter. I guess that at some point, every life is characterized by this odd duality. I just wish it weren’t our reality. 

After Bella died last February, I took up running. I was so out of
shape when she passed away and I felt like I was standing at the intersection of fall apart or pull it together. I started a diet and a fitness routine. My goal
was to lose 30 pounds and be a runner in The Patriots Cup – a 3k race that
benefits The Arc of Northern Virginia. 

The reason that goal was so very important to me is that Bella’s bones
broke. An undetected calcium and vitamin D deficiency meant that her body just broke into pieces. She was born with so many problems and missed out on so many wonderful experiences. It seemed appropriate to make The Patriots Cup an annual event to benefit The Arc in Bella’s sweet
memory.
 
I reached out to friends and family and asked them to Join Team Bella and run or walk with me in the race. Last Saturday marked Team Bella’s second year of participation in Patriots Cup. We didn’t win a trophy and we weren’t fast. But boy were we mighty! There were about 50 members of Team Bella this year and we raised close to $4000 for The Arc of Northern Virginia  and will help people
with intellectual and developmental disabilities and their families. I know firsthand how The Arc can literally save families by informing them of services, rights, and activities that allow people with disabilities to thrive.  

Let me tell you a little about Team Bella. First, we have a beautiful logo that was made by Actual Size Creative last year and given to us for free. The folks at Actual Size are amazingly creative and talented and when I asked them if they could design a logo for us, they jumped at the chance and created one that is perfect for remembering Bella. Some of our members donated but didn’t participate. Among them was my mother, my aunt, some of my very best friends, and some very generous colleagues. Other members ran or walked this weekend and donated. As I ran along I thought about each person who supported our efforts and how so many of them had been there from the very beginning when Bella was born. 

This year my son ran in the race. He had his teachers on either side of him and as I watched him run across the finish line with all his might, I was so proud and so very thankful that he is healthy and can join me for this special
event and grateful that his teachers have joined Team Bella!

 I ran with the father of my children. He is no longer my husband, but he is my friend. It brought me such joy to share this experience with him too. Last year he brought our son. This year we all ran and perhaps fittingly, he and
I crossed the finish line together just as we had with all of Bella’s life events – as a team.

My fiancé walked with Bella’s nurse and one of Bella’s teachers who we love so dearly. Words cannot adequately express the admiration and the love I feel for these three amigos. I also watched them cross the finish line. My fiancé even ran the last part of the race. 

Some of my dearest friends ran with me. Among them was Kirk who literally has been there for me at every step since before Bella was born. He ran by my side last year and this year. He is one of our best runners and could blow my pace out of the water and yet he runs with me, helping me strategize and making sure I am ok. I love him so much. He is such a beautiful person. His wife and daughter are too. They honor Bella and think of her all the time and even visit her grave frequently. 

The members of Team Bella are keeping her memory alive and bright. Her speech therapist, her teachers, her physical therapist to name a few. As I saw them at check in, I thought of the enormous role they played in her life and how
they held us, comforted us and waited with us for an entire weekend at the hospital as we said goodbye to Bella and now are still giving to us to help keep her spirit alive. 
 
And a big part of Team Bella is due to my personal trainer and his clients who last year and this year represented a third of Team Bella. These folks are new friends for me and it really touches my heart to know that they
want to be part of Team Bella too. 

Some of my teammates are my colleagues and I am deeply grateful for their friendship and support. Some of Team Bella’s most important members couldn’t be there this year but will be back in 2015. We missed them but we knew
they were with us in spirit! 

It was a very special day in memory of a very special girl is dearly loved and deeply missed. It felt so good to run, so good to raise much needed funds for a wonderful organization and so awesome to be reminded of the extreme power of love and friendship and how it fuels your heart and can heal you and bring you from the deepest valleys. I know sweet Bella is in heaven beaming with pride at us all. I so wish she were here to hug and kiss but I know that she is in paradise. Thank you so very much to Team Bella for another very successful race!

On a recent outing to the National Zoo, I offered to buy a toy for my son.
He likes stuffed animals and immediately was attracted to a very cute
stuffed eagle. But the little eagle was quickly passed over in favor of a
red, yellow and black hard plastic snake that is at least 2 feet long. For
2 days he slept with it, talked to it, carried it around and then put him
in the car to “ride with us to school.” 

The snake is still there. His name is Snakey. He’s in the backseat. I decided to leave him there as a security measure. Any would-be carjackers might think twice upon seeing the surprisingly realistic looking Snakey in the backseat. 

Life with a boy.

I grew up in a female household. My sister and I owned at least 100 Barbies…and one Ken. We were girly girls and when I learned I was having a boy – well, I was just a little lost. But life has a way of surprising you and before I knew it
the milestones of being a girly mom to a boy were right before me:

Being peed on...Fart talk all day, all the time, all year long…Taking pride in how many layers of dirt he can wear at a time…Licking pretty much anything (CVS trash can, candy off the ground, ice cream off the floor to name just a few)…Drinking dirty bathwater...Building a collection of planes, trains and automobiles…Re-enacting the Battle of the Alamo with plastic toy soldiers…Moving nonstop until he falls asleep while talking…Legos. Legos. Legos. Legos…Playdates characterized by the first 20 minutes consisting entirely of fart noises and unending laughter.
 
Being mom to a boy has some completely unexpected joys as well. Boys sure love their moms. He’s almost in first grade and he still yells “I love you Mommy!” the minute he sees me. He still wants cuddles at night. He isn’t embarrassed to be
seen with me and he loves spending time with me. I am his favorite person. I know this precious time where I can do no wrong, where I am his rock star, where I am so wise…is fleeting. Oh, how I treasure these days. 

This amazing love I get from him is so very sweet that I have freely embraced his boyness. Farts have even become funny. Poop doesn’t faze me. Dirt washes off. Race cars are more fun than Barbies as it turns out. And we are great partners
in soccer because – well -- I suck at soccer and he loves to win. 

And he is so very funny. This week’s funny moment came at the hair salon when my stylist said, “Doesn’t Mommy’s hair look pretty?” And my son said, “Yes, it does. My Mommy is always pretty.” As my heart swelled with joy and pride at the unprompted compliment he followed up with…“Except when she is naked in the shower. It’s NOT pretty.” 
 
It’s time to start locking the bathroom door.

 Today was Mother’s Day - my second Mother’s Day without Bella and it was just me and my son today. This photo is from Mothers Day 2009. But today it was just me and my son. I have a full blown sinus infection and am feeling pretty icky.

But it wasn’t a tough day. In fact it was really sweet and something to treasure. My fiancé is more than halfway across the world for work, but he  remembered to buy cards from him and my son and left flowers and a gift for me. There was even a card he had signed for Bella with a note that said “She is always with you.”

At around 6:30 a.m. I heard the little guy's footsteps. He climbed into bed with me and said “Happy Mother’s Day! Today is your day. We will do whatever you want today Mommy.” He asked if we could snuggle. I love that he still likes to do that. Of course, snuggle sometimes means flipping and flopping around in bed which was the case this morning. I struggled to sleep between sneezing, coughing, blowing my nose and feeling like I was in bed with a dolphin and quickly gave up.

On days when I know I will be sad, I usually overschedule us. Staying busy keeps me happier. I had promised to take the little man to the zoo and then to see Rio 2. He is fresh off his Amazon Rainforest unit in Kindergarten and also eager to see the baby Panda Bear, Bao Bao. I had promised a dear friend in DC that we would visit. I also knew I wanted to visit Bella. So, lots to do and even though I was feeling pretty yucky, I really didn’t want to spend the day in bed.

Off we went to the zoo. He was planning our visit in terms of food and what I might be convinced to buy him. “Let’s get ice cream. Can we eat lunch here? Can I get a toy? Can we see the panda? Can I tell you about sharks? Hey, did you know the three levels of the rainforest? I do!” He was skipping through the zoo with complete joy. We passed a face painting booth and he wanted a lemon shark painted on his face.

Since Bella died, I have certainly been guilty of spoiling him. It’s something I have been trying to correct all year but today I decided that if I wanted to spoil him, it was a good day to do it. Truly all I wanted today was to have a wonderful day with him full of sweet memories. Soon he was sporting a lemon shark on his cheek. Next we saw the zebras, cheetahs, elephants and then the Panda exhibit. I was surprised to see the pandas out and playing in their yards. Mom was eating bamboo with passion and baby Bao Bao was up in a tree. I couldn’t believe our luck! This was by far the best zoo visit in terms of being able to see all the coolest animals. He looked at me, smiled and said, “This is literally the most awesome place.”

He asked for a toy. He picked a big fat plastic red, yellow and black snake. He declared it a boy snake and immediately gave it a creepy sounding name but assured me that the snake only eats leaves and is actually very friendly.

We linked up with our friend and visited for a few hours over brunch. I always enjoy seeing her.  Bella loved her so much and being around her makes me feel close to Bella. Apparently my little man loves her just as much as I do because it was hard to get a word in edge-wise. “Have you met my snake? He is a nice snake. He isn’t a girl. He eats only leaves and rocks. Here, pet him. He likes you. Can you hold his mouth open for me? Can I take him to lunch? Can we pretend we just got him at a pet store?” At the restaurant he assured everyone the snake wasn’t real. No one seemed very surprised by that fact. He hung the snake out the window. He and the snake hung out under the table. A boy and his fake pet snake.

When the movie ended, we reunited with the new pet snake (who was taking a nap in the car) and headed over to the cemetery to see Bella. That may sound sad. On one level it is. I hate having to visit her there. I really hate that she is there and there are many days that I still cannot believe she is gone. But I also enjoy going there and taking her something. The cemetery grounds are absolutely beautiful, peaceful, green and flowery. It’s an amazing place to be laid to rest and I find comfort in taking something to ensure she is not forgotten. My little man told her all about our day and introduced his snake to her and then proceeded to pretend the snake was slithering through the grass. I’m sad to have to visit her there but glad that I can. It just wouldn’t feel like Mother’s day if I wasn’t able to go there.

He looked over at me. “Are you crying Mommy? I want you to be happy.” This time I was able to look at him, smile and say, “No honey, I am not crying. I am happy.” He said, “I think she is really happy and dancing in heaven.”

Our day ended as it began. Snuggled up in bed, watching a movie, one of us sneezing and coughing and the other one flipping and flopping around like a fish out of water. I miss Bella every single day and today was no different, but I felt grateful today for the joy that I felt in my heart as I just savored every minute of sweetness life offered.

Most days being a mother means having to say, “Please get up. Please get dressed. Please eat your meal. Please don’t burp at the table. Please say excuse me. Please say thank you. Please brush your teeth. Please go to sleep” at least 45 times. It means discipline and routine. It means you have to watch what you say and do and set a good example. I wouldn't trade it for the world. In my second Mother's Day without Bella and in a week where the world is focused on hundreds of girls who were kidnapped from their families and may never be seen again, I felt truly blessed to have this special day with my little guy and  to know and love all the amazing mothers (family and friends) who inspire me and teach me every day.

We  got pregnant three weeks after we returned from our honeymoon. We weren’t trying to get pregnant but we weren’t trying not to either. For some inexplicable reason, I always felt it would be hard for me to get pregnant. At 34 years of
age, I knew I wanted to have several children and so we stopped birth control and figured it would take 6 months to a year to get pregnant. 
 
The first round of tests yielded a positive finding for me as a cystic fibrosis carrier. It rattled me and shocked my whole family. We never knew that any of us were carriers. Thankfully my ex was negative and so CF was ruled out as a possibility for our baby since both parents have to be carriers in order to have a chance of the baby having CF. But the incident rattled me.

My ex and I were divided over genetics testing. I wanted it, He wasn’t sure about it. We inquired about our options and settled on the nuchal fold test as a first step. Results came back that showed virtually no chance of Downs Syndrome or a
trisomy. The doctor raved about the test and said we should not worry and just move ahead with the pregnancy. No family histories to worry about and we were on our way.

 As the pregnancy progressed, the baby wasn’t very big. My mother worried aloud wondering if there were major growth problems. It irritated me at the time. Why worry? The baby was probably small. My ex and I were both little, after all. At
the 20 week sonogram, we were told the baby I was carrying was a girl. My ex was certain it would be a boy. His family rarely had girls. I was certain it would be a girl. I was elated. My ex was in shock. We were both happy. We told our
families and everyone to think pink. My mom said, “Congratulations! You will have such fun for 12 years!” (I was a horrid teen, full of attitude and unkind words which I deeply regret).

My ex examined the ultrasound pic and said, “I think there is something wrong with her mouth. Maybe a cleft lip.” I didn’t see it and the docs said no. We forged ahead. 

At 31 weeks we were told the growth was extremely behind, my blood pressure was high, the umbilical cord had three vessels and Doppler flow to the cord was irregular. We were rushed to the hospital and warned that a preemie was on the
way. She didn’t arrive that day but testing commenced. What, if anything, was wrong with me? What might be wrong with the baby? Tests yielded no results. One doctor said, “She may just be small and otherwise healthy or she may have major
problems. We won’t know until she arrives.” They gave me a steroid shot to mature the bay’s lungs and sent me home on modified bed rest with strict orders not to work and to eat a lot more. I tried to focus on positive things and I
truly believed that the baby would be ok. 

Welcome to Wonderland where you don’t get to plan your life anymore. The truth is we were never in control of anything, we just thought we were. That’s a hard truth for anyone to learn. The question mark hung in the air for 6 weeks. My ex, my
mom and I checked into the hospital to have the baby by C-section two weeks early. 

She was born at 5:40 pm on Friday, March 3rd. In rapid fire fashion and devoid of emotion, the neonatologist announced:

She has a three vessel cord wrapped around her neck several times.
 
She is much smaller than expected, only 4 pounds and six ounces.

She has a cleft palate.

She has ten fingers and 12 toes. 

She has an ASD and a PDA.

She has a shrill cat-like cry.

She has a simian crease.

She needs to go to the NICU for testing. Looks like a genetic disorder.

And down the rabbit hole we fell. Hard. Fast. No soft landing. 

Then they handed me our baby. I looked at her and thought – she looks so pretty, so much hair, so tiny. But I also felt extreme heartache. The kind of heartache you feel when you think you may not live through it. The kind that pierces your
heart and breaks it like glass into a thousand tiny pieces. I started to feel faint. I asked my ex to hold her. He did. Then they took her away and I didn’t see her again until the next day. They wouldn’t let me go to the nursery until the epidural wore off. 

My ex could go see her and hold her. He came back and told me how beautiful she was. My OB came and assured us that she was doing fine but they were running tests to get the full picture. The nurses were quiet. No one came to talk to me
about breastfeeding or pumping. My mom was worried sick and in full-on Supermom mode. Friends embraced us carefully and lovingly for what would become a lifetime of hand holding. 

I felt utterly devastated, scared to death and lost. Hopelessly lost. Here I was a newlywed with a sick baby and no one could tell me if she would be ok. My dream of motherhood, the only thing I ever really wanted, was NOT supposed to play out
this way. This was not the way it was supposed to be! I wished and prayed and hoped for a miracle. On the next day I held her and it felt wonderful. She was cuddly and beautiful. She had the cutest little nose, the sweetest little cry.
We were hopelessly in love with our sweet child. 
 
Tests later revealed she had 1q deletion syndrome which meant that she was medically complex and developmentally delayed. Some things could be fixed, others couldn’t. We were told she would likely never eat on her own, talk, walk, sit,
or stand, use her arms, know who we were, have any memories or any capacity to learn at all. We had no idea how long she would live. We would have to wait and see what she could do and how healthy she would be. Life as we knew it was gone. Life in Wonderland had begun.

I didn’t see it at the time but the miracle was Bella. She never should have been born. Most babies with her chromosomal disorder miscarry. She was a rare, fragile flower. Only 29 other people in the world at the time had been diagnosed
with the same abnormality. So there was no roadmap and few resources. We were sent home when she was 2 weeks old with a list of about 20 specialists and doctor appointments, a feeding tube and some resources for early intervention.

I guess every first-time parent goes home wondering if they can handle this parenthood thing. For us, that feeling was overwhelming as my ex, my mom and I dressed tiny Bella in the smallest preemie outfit we could find and buckled her
into her car seat to take her home.

Bella at about 16 months. Summer of 2007.