Too Beautiful
The after Abel is searing…the after Abel looks and smells and sounds and feels so very different than the before. I wouldn’t go back though – not for a second – because as painful as the after Abel is, having Abel here was wonderful and I would never wish away that time. So today, Leap Day, his due date, I am working hard to focus on the joy of the time he spent with us, rather than the sorrow of his absence. It isn’t easy; there has been a lump in my throat since I woke up and the hole in my heart feels wide open, but as has been the case throughout this entire journey, Abel’s story is not one to be kept for ourselves, it is one to be shared.
In this spirit, I share the story of Abel’s 4 hours and 11 minutes of life…a life that, as described in that haunting Trampled by Turtles song was simply …
“too short and blinding
and too beautiful
too beautiful
too beautiful for me.”
My induction began at 5:35 pm on Thursday, February 18, 2016, and, just as planned went slowly and gently so as to place as little stress on Abel’s body and heart as possible. Joe and my best friend, Kelly, stayed right by my side through every moment and my friend Holly was there to photograph it all. My parents were at the hospital from the moment we checked in, essentially, and several other friends and family members joined them in the waiting room throughout the evening…many of them pulling an all-nighter. My brother was on Haddie duty and they arrived around 2:30am (all reports stated that Haddie was a gem and relieved much of the tension, running around in her “p-jams” and sneaks, being her adorable two-year-old self). We didn’t know how quickly he would arrive and no one was willing to miss a second of his life. Joe and I were beyond grateful to know we were surrounded by the support and love of so many of our people.
After fighting through just over 14 hours of labor and six minutes of pushing, Abel Joseph Woodward was born into this world at 8:04 a.m. on Friday, February 19, 2016, weighing 3 lbs., 6 oz., and measuring 17 inches in length. I do not use the term “fighting” lightly, as the labor process was not easy on our little man’s heart. While I could hear his heart rate slow through the monitor, it wasn’t until much later that I learned how low it really dipped, at times dropping to the low 20s. But, as he had done all through my pregnancy, he fought on and was born making the most beautiful little cry. Babies with Trisomy 18 don’t typically have a lot of lung power, so their cries tend to be on the feeble side, and while Abel’s wasn’t terribly robust, it was loud enough for our friends and family waiting anxiously outside our door to hear. It was the absolute greatest sound.
He was placed directly on my chest and we all sobbed with joy – he was ALIVE!!! He did it!! He beat a major set of odds and survived through birth. I beamed with pride as I held my little brave man, and in that moment, nothing could have made me happier. The moment was fleeting, however, as Abel was struggling to breathe. My doctor took him and placed him in the care of the NICU team waiting beside the warmer. Abel’s Daddy stayed by his side as the doctors gave him breathing assistance via a CPAP, which essentially forces oxygen in an effort to keep airways open.
The treatment was effective and Abel was wrapped up and placed back in my arms within moments. He was given Apgar scores of 6 and then 8, effectively outperforming his sister on the one-minute score – Way to be, buddy!
I know I’ve said this before…but I could have held that little boy forever. His body was the sweetest, most delicately delicious thing I’d ever experienced (apart from his sister, of course).
Once Abel stabilized, we began bringing in our friends and family to meet him. Haddie was first, then grandparents and siblings and then the rest of our friends and family who were there. Since his status was so touch-and-go, I was hesitant to let anyone else hold him, and I don’t think anyone really wanted to ask to take him from me. Instead, I held him as close as possible while everyone came in and loved on both of us. The joy in the room was like something I’ve never experienced, and I’ll never forget that feeling. I cling to that feeling.
Not too long after everyone at the hospital had met Abel, he began to struggle. We cleared the room – with the exception of the medical team, Joe, Kelly and Holly – and attended to his breathing difficulties. Abel had his first apnea spell right around 9:00 a.m. For those of you who have never experienced apnea, the body simply stops breathing. For Abel, it was literally like the switch in his brain responsible for sending the message to his body to breathe just shut off. During that first spell, he didn’t breathe for approximately 30 seconds before the switch flipped back on, he gasped for air and let out the most heart-wrenching cry. It was terrifying. I felt helpless, as did everyone else, because we were, in fact, helpless. This was Trisomy 18.
As his breathing continued to stop and restart, my doctor told us that she believed Abel was telling us it was time. This was shattering – in an instant our hopes of bringing Abel home and having days or weeks or months to spend with him were seemingly dashed. Upon our request (and as we’d planned prior to his birth), Dr. Prosen grabbed a small cup of holy water and, at 9:05 a.m., baptized Abel right there. We learned through our preparations that anyone baptized Catholic can baptize a baby, and having our doctor do it felt quite fitting; she’d supported us through every step of the journey and was now supporting Abel through this sacrament as well. Together, Joe and I wept, held our baby boy, and said goodbye…
But then, as quickly as he’d seemed to slip away, Abel came back. I don’t recall exactly how long the apnea lasted, but Abel began breathing again – his eyes opened and his color returned. Our little “breathing spirit” was fighting hard to stay with us. We were elated, but it was also agonizing to watch him struggle.
Soon thereafter, at 9:20 a.m., our dear friend Mike, one of Joe’s best friends since childhood and a pastor, said a lovely blessing over Abel and our family at 9:20 a.m. Everyone who was there to support us, including several members of our care team, gathered around us and shared in the reflection and prayer. I held Abel close to my chest and prayed harder than I’ve ever prayed before.
A short time following the blessing, Abel had another apnea spell. It was just as scary as the first and we once more dug deep for the strength to let Abel go and say our goodbyes. I remember telling him that his auntie was on her way and to hold on just a little bit longer; my nephew had been sick and my sister-in-law was frantically racing to the hospital. He listened and started pulling through the spell just as she arrived. Abel once again showed us that he was taking the meaning of his name to heart – the switch flipped back on and he began breathing. We all let out a huge sigh of relief…he was still with us.
After that second apnea spell, Abel had the best, most alert stretch of his whole 4 hours, 11 minutes. He cooed and grunted and responded to the sounds of his loving family and friends. It seemed as though every time Joe would speak to him, Abel’s eyes would go searching for his Daddy – it was amazing – especially considering that most babies with Trisomy 18 have significant hearing impairments due to the low-set structure of their ears.
Hearing the doctor say, “He’s responding to you!” was among our proudest of moments. During this stretch of time, we got to do some really special things with Abel, including giving him a bath and feeding him. I recall Haddie’s first bath and how much she hated it; Abel, on the other hand, loved it. His little body just relaxed in the warm water and he gently grunted as we washed him. I have a video of my doctor commenting, “Just a regular day at the spa, huh Abel?!?” Haddie even got to help with the bath; it was a very proud big sister moment.
Once bathed and dried, we got Abel dressed in one of the outfits we had purchased him (which was preemie sized, yet enormous on his tiny 3 lb., 6 oz. frame) and had some beautiful photos taken by the organization, Now I Lay Me Down to Sleep (NILMDTS). NILMDTS offers professional photography sessions at no charge to families who have had a baby born still or who have a baby who is expected to die shortly after birth. We’d arranged this photo session through our social worker and I’m tremendously thankful to her for doing so. The timing was such that the photographer was there while Abel was still living, and we are beyond grateful to have those moments captured – when our family of four was happy and complete.
After his bath and photos, Abel showed some signs of hunger! This thrilled me as I wanted few things more than to be able to nourish his little body. With the help of our nurse, I was able to express some colostrum onto a spoon and feed him at 11:29 a.m.. He LOVED it and I can’t even begin to describe the feeling. Our little buddy ate two spoonfuls, which, for his tiny size, was pretty impressive. He grunted with delight and I laughed with glee.
Everyone started breathing a little easier after Abel ate. He just seemed to be doing so well. So well, in fact, that I’d finally agreed to eat something myself. I was even going to let my mom hold him while I ate my sandwich. I wanted so badly for her to have the opportunity to hold him, but just as I was going to place him in her arms, I saw the color in his face begin to change. There was a vein that started at his forehead and ran right alongside his nose that would light up blue when he was struggling to breathe. I saw that vein brighten and I knew we were in for another apnea spell. I kept him in my arms and alerted the pediatrician to his worsening condition. This spell, from the start, was worse than the others. Abel struggled more and his cries were weaker. He tried to fight, but his brain simply did not send the right messages to the right places, and his wee little heart was too weak to handle the stress of it all. In my gut, I knew it was time. Joe and I held him and cried over him and wanted so badly to beg him to stay, and to keep fighting. However, we couldn’t be selfish; we could see that it was just too hard, and we told him to let go, that it was okay, that he’d fought hard enough and could rest. The pediatrician announced Abel’s death at 12:15 p.m. Our hearts shattered into a million pieces.
Abel Joseph Woodward had lived for a wonderful, yet difficult 4 hours and 11 minutes. During that time we felt joy and agony, relief and pain. We were the happiest and the saddest.
In the end, that extra 18th chromosome that inhabited each of the tiny cells in his wee little body made our son too beautiful for this world. His purpose simply could not be contained by his earthly body, as it turned out to be much more mighty than what could reasonably be confined by skin and bone. And, although I’m not there yet, I know someday that truth will bring me comfort; I know (because I’ve been told by those who’ve traversed this path before me), that I’ll be able to look back and be grateful for the 4 hours, 11 minutes we had with Abel. But right now, as grateful as I am, 4 hours and 11 minutes doesn’t feel like even a fraction of enough time, right now I just want to go back there, back to 8:04am – 12:15pm on 2/19/16 and hold my baby boy and tell him again how crazy-madly he is loved. I want him to meet the people he didn’t get to meet and see the things he didn’t get to see. His life was, indeed “too short and blinding.” Joe and I would do just about anything to get back to him, back to the before, but since we can’t, since we are stuck here in the after, we will strive every day to keep his memory alive by #believinginbabyw and working to carry his #weebutmighty legacy forward…
“Beautiful”
By: Trampled By Turtles
Weakened from the bottle
What are you fighting for?
Simple and subtle and lying
And too beautiful
Too beautiful
Too beautiful for me.
A massacre of timing
A shadow world at best
A life too short and blinding
And too beautiful
Too beautiful
Too beautiful for me.
No one saw it coming
And no one sees it still
Empty space and memories
Too beautiful
Too beautiful
Too beautiful for me.
And I’m scared that I… forget it.
I hate that life goes on.
The world so sweet and deadly
And too beautiful
Too beautiful
Too beautiful for me.
Austin Cade
Austin Cade Standridge was our surprise baby #3! We had no immediate intention of having a 3rd, especially not with my daughter still just barely 1 year old. But, my son (then 7) had prayed and prayed for a baby brother and he got his wish, though not in a way any of us could have ever imagined.
The pregnancy seemed pretty routine until my 20-week ultrasound. After a rather interesting ultrasound, they dropped the mother of all bombs on us and told us that our baby #3 had what is commonly known as Potter’s Syndrome and would not survive long after birth if he even survived to full-term. We were in shock, devastated, our lives at that moment completely turned upside down.
We went from planning the fun way in which we would share the boy/girl news with our two other children and their grandparents to now having to decide do we continue with the pregnancy and if so how do we plan for what happens when our baby passes. And then to have to tell our son the news, who had begged us to skip his second day of school to go to the doctor. The hardest and most heart-wrenching thing I’d ever had to do up to that point, we were very open and direct with our son explaining everything the best we could and encouraging him to ask as many questions as he needed.
My husband and I, after the initial shock wore off, decided not only would we carry our baby as long as God would allow but that we would do all we could to make the most of the time we had left with him. From a small bucket list of things we wanted to do with him to just enjoying the pregnancy as much as possible bringing both our children along with us on our journey.
On November 21, 2014, I went into pre-term labor at 32 weeks and our sweet baby Austin was born in the wee hours of November 22, 2014. He was born alive and survived just 45 minutes. Both his brother and sister were there to meet him and say good-bye to him. They allowed us to stay with our baby for quite some time as we had family trying desperately to get into town that wanted to hold him just once. We allowed his big brother to hold him often, and his big sister gave him a couple of kisses but was a bit afraid to hold him. Leaving him in the hospital was the hardest thing I’ve ever done… The next week was a whirlwind of decisions and plans and not to mention Thanksgiving, we buried our sweet baby #3 the day after Thanksgiving.
Lost and in a deep state of grief I began to seek out ways to keep his memory alive. To keep him close to us in some way, to make sure that his big brother and sister (especially since she was too young to grasp what was happening around her) remembered him and knew that they once had a baby brother who now looks over them from Heaven. Christmas came around and I needed someplace tangible to go and something tangible to leave, and so did my son. It just made sense to me that we decorate his graveside and bring him some small presents and flowers. It felt right. These visits have now become deeply important to our family, we visit him almost monthly, each time stopping at the local grocery and allowing the kids to pick out which flowers or toys we are going to take to him this time. There is time allotted on every holiday to make a special trip out to see him. He gets an Easter basket right along with the other kids and the Easter Bunny puts a few treats in that we take to him on Easter Sunday. There’s even a special bubble set that is reserved for the kids to take out to the cemetery and blow bubbles for him and the other babies around him. The kids actually look forward to our visits with him and ask to go, even the now 3 year old!
We’ve also got several pictures of him around the house. And thanks to our wonderful NILMDTS photographer who captured some beautiful moments with our baby, I was able to create a photo book of his story that is kept in my coffee table and we show to the kids every now and then. My daughter has since learned who he is and points him out to us. She’s figured out that she has a baby brother named “Baby Austin” and “he sleeps with the flowers”. We were given a special “angel” candle shortly after he passed that we keep on the mantle with another photo of him. We light the “angel” candle on special occasions such as birthdays and holidays to help us feel that he is there with us.
We also made sure to include him in some way in a recent family photo session, and I intend to make sure that any future sessions include him as well. We are a family of 5, just one of us lives in Heaven. It is important to me that he remains a part of the family, not just for my husband and me, but for his siblings as well. After all, he was the baby brother that his big brother had prayed so fervently for.
Photograph courtesy of the Standridge family
We’ll never know why his prayer was answered in such a way… I never want to feel like he is being forgotten or he didn’t happen. These are ways that make sense to me, that worked for our family and help me get through the agonizing pain of not having him here. They’re ways for my kids to tangibly see that he did exist.
I know that what we do does not and will not work for every family. All I can say to anyone trying to figure out how to tell their children about the sibling they never got to meet is to take your time and do what feels right to you. Be it showing them something tangible like the hospital bracelet or blanket or a picture and using that to tell their sibling’s story or taking them to the gravesite they didn’t even know existed. Whatever you do, it is keeping their memory alive in your own special way, and that’s the most important part.
The Impossible Question
I call it the impossible question to answer. Can you guess what it is? I am sure many of you have been in my same position, but maybe your circumstances look a little different. Maybe you have a chronic illness or take care of your child with special needs. Maybe you struggle with depression, anxiety, or a traumatic past. Do you struggle to answer this question as well? Over the last month and a half, I have felt grateful because many people have texted, called, or asked me this question in person, “How are you doing?”
I’m sorry if I seem to dodge the question. I just frankly have no idea how to answer it.
Do I say I’m doing ok if I can function during the day and even laugh and take joy in the antics of my children? Am I doing ok if I have play dates with friends and make time to take care of myself? But then if I say I am doing ok, am I conveniently leaving out the parts of my day where my mind takes me back to holding his lifeless body on my back deck and kissing his cold cheeks, telling him goodbye? Do I tell you about the many days I replay giving him CPR and if I should have taken him into the doctor his last day of life? Do I share the agonizing pain I feel when another mom snuggles her baby close to her chest or how I quickly avert my eyes when I pass the baby aisle at the grocery store? When I see a sleeping infant in a car seat, my first thought is, is he breathing? I think about Joshua all the time and often times throughout the day, I am moved to tears. The next moment, however, I may be laughing and enjoying the company of friends and family.
When you loved someone and wanted someone with every fiber of your being, they are etched on your soul and intertwined into everything you do. I can’t imagine a day going by where I won’t think of Joshua and imagine him alongside my other children.
So how am I doing? I’m still breathing, still putting one foot in front of the other, still LIVING, but I carry Joshua with me throughout each day and I will continue to, until we meet again.
Photograph courtesy of the Treibel family
This is a picture of one of the only days I got to lay skin to skin with him and he absolutely loved it! One of my most treasured memories.
Samara’s Song
For nearly 40 weeks
I couldn’t wait to see her face
Hold her hand and kiss her cheeks
When we had the ultrasound
That said she was a girl
A mix of shock and pleasure
Set our minds into a whirl
I watched my belly grow and grow
Enjoyed her tiny jabs
I never knew these special times
Were all that I would have
I so looked forward to the joy
Of having three sweet girls
That would tell each other secrets
And together see the world
I thought we’d have a lifetime
To learn each other’s hearts
Too soon that hope was shattered
And my dreams were ripped apart
When we were told that she was gone
I cried in disbelief
The pain I felt within my heart
Brought never-ending grief
All too soon the time had come
To say hello and then goodbye
I held her close within my arms
All I could do was cry
She was so tiny and so perfect
My heart was full of love
For this precious little bundle
Sent to us from up above
I counted her 10 fingers
And 10 perfect tiny toes
Marveled at her head of hair
And kissed her little nose
The absence of my daughter’s cry
Was more than I could bear
My heart was filled with ache and loss
I cried out in despair
I don’t know how to let her go
I said through tears of pain
She has forever changed me
I will never be the same
The time had come to leave her
I sang a lullaby
Tucked her blanket tightly around her
Kissed her cheek and said goodbye
When I turned and walked away
Could be compared to none
To leave behind a part of me
Was the hardest thing I’ve done
I cried out in my suffering
For God to bring relief
To ease my anguish and my pain
Bring an end to endless grief
My God has made a promise
To those who bear his mark
To make beauty from the ashes
And bind up broken hearts
I cling tightly to his promise
He’ll be always by my side
To give me strength and hope and peace
In His shadow, I will hide
He’s brought me up out of the depths
Of grief, I’d sunk into
And shown me how she blessed me
And she can bless you, too
She taught me things in her short life
I hadn’t learned upon my own
She filled a hole within me
And my love has only grown
She taught me to have patience
To always give my love
To those who mean the most to me
And fix my heart on things above
She’s shown me that this life
Is here and then it’s gone
A vapor in the wind
A darkness before dawn
She taught me to find beauty
In the hardships in this life
To rise above the struggles
And the trials and the strife
Though she isn’t here to hold
I love her like no other
On her, my heart will fondly dwell
And I’ll always be her mother
She has no voice that we can hear
Though for it I do long
So until we meet again
This is Samara’s song
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