To Poppy from Daddy
I’ve discovered, and people have passed on, the blogs of mommies who have walked a similar road to me. It is such an encouragement (although sometimes painful as well) to read the words of this sisterhood. But what I haven’t seen a lot of is the perspective of the father. So when Jeff wrote out a letter to his dear little girl, I wanted to share it to give a more complete perspective on where we’re at. One quick sidenote – Poppy is this little one’s “womb name.” When we found out we were pregnant, she was the size of a poppy seed – hence the name. We’re working feverishly at discerning her “real” name, but haven’t landed on it yet. So settle in, and grab a box of tissues (but prepare for a few chuckles amidst the tears). I love this man. And he’s pretty much the best daddy a girl could ever dream of.
You Grow That Rib Cage, Baby Girl. That’s an Order
A letter from a daddy to his (unborn) daughter
Dear Poppy,
Thank you for letting us see your beautiful face last Thursday. You were having quite the party, I could see, flipping around and using those little legs to put on quite the show. It was as if you knew the camera was on you and you wanted mommy and daddy to see that, for whatever you lacked in apparent length, you made up for in energy and life. As per the showing off part, your sister does that too, so I imagine you come by that quite honestly.
But Thursday was significant for another reason. It’s the reason I’m writing this letter to you tonight as my heart aches and my mind wanders. Here is your story, as told by your daddy who loves you very much. It’s a story that is still being written, but a story that has already etched itself into my heart. On these pages bear the contents of my heart, mushy and raw.
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We were going to have a little person. A really little person. But it all made sense now.
“We can do this,” I told Katherine.
Katherine gave me that look which, after three years of marriage I’ve managed to decipher as, I trust your judgment but I’m overwhelmed.
“Sure, it’s going to have its challenges, but it could be good for us. Our family.”
“I think we would want to consider the River Academy for her,” Katherine said after some time.
I looked down at my Subway sandwich, or the remaining bite of it anyways. I was eating faster than Katherine. I never eat faster than Katherine. I never eat faster than anyone. After all the unknowns of the previous couple weeks, it was going to be ok after all. We had our answer, and it was a manageable answer.
“I agree, as long as we can swing the finances.” I could picture Poppy being loved on by the other students, escaping the social pressure and juvenile cattiness at the publics. “Do you think Ellie will be a good older sister?”
“I think she’ll be a great older sister. We would teach her to be.”
And so it was settled. We were going to have a little person, she was going to the River Academy and Ellie was going to be a good older sister. We would teach her to be.
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It was a journey that had started a little over two weeks earlier. Two very long weeks, as it turned out. We were having our 18-week ultrasound. It was our first opportunity to see little Poppy and we were understandably excited. Katherine was excited and nervous; I was simply excited. This was our second time around and I saw the ultrasound as both a photo op and formality. I was most excited to get the floppy, low-resolution photo to put on our fridge.
True to form, Poppy was kicking and swimming about in her little kitty pool, unaware that mommy and daddy were spying on her morning activities.
“Does everything look ok,” I asked.
“Everything looks good,” she said. “The little one is very active.”
Yes, we knew that. “The ‘little one’ would turn into either a ‘he’ or ‘she’ if we could make out the gender without assistance from the tech. If our sleuthing skills failed us we would be forced to wait until the following day on the first night of our vacation.
The photo op was bordering on the boring as we measured the arms and legs for like the 2nd or 3rd time. I still hadn’t gotten my floppy, low-resolution photo for the fridge, and we had yet to see her profile.
The screen read 16-weeks.
“So it’s showing that we’re two weeks behind,” Katherine said.
I wasn’t sure if it was statement or question. It didn’t matter.
“I thought you were 17-weeks?”
“We are 18 weeks.”
Two seconds later I was poised to ask Google what a two-week deviation meant. I didn’t get far. My rule-following wife pointed out a sign which prohibited cell phone use.
“I’m not taking a picture,” I said, looking for a loophole.
“It doesn’t matter.”
And so 15 anxious minutes passed before Google was at my service. How important was a two-week deviation in limb growth anyways? Of course the baby’s limbs measure small. Have you seen her grandma? Aunt? Great Grandma?
But Google had a different take. Down Syndrome, Turner’s Syndrome, and a few other difficult to pronounce disorders filled my little screen. Apparently those who knew a little bit more than I did about medicine seemed to think that a two-week deviation was a cause for concern.
“The baby is probably just short. Look at my family,” I told Katherine. I was trying to convince myself as much as I was her. We sat at a little bistro table outside the hospital as we asked Google questions that Google simply could not answer. It’s a setting that I will likely never forget. Two and a half weeks later we were at the UW Medical Center looking at an ultrasound again. This time, however, we went in knowing Katherine was carrying a precious little girl. I was going to officially be outnumbered, out-voted, and ultimately resigned to a life of pinks, purples and pastels. The three P’s. And I couldn’t have been happier.
In the little, dark room Poppy was up to her usual shenanigans.
“Wow, did you feel that?”
“Oh yeah,” Katherine said with a nervous smile.
“You don’t normally feel them that strongly at this stage,” said the ultrasound tech.
“She’s an active one,” Katherine said.
Active and uncooperative.
“She moving around so much that it’s hard to know if I’m measuring the same side of her.”
That was our Poppy. She was playing hard to get. I would too if I was being poked and prodded. We measured kidneys. We checked for a nasal bone. We measured her skull. We checked her feet. If the tech was attempting to build suspense, she had succeeded. I was waving the white flag.
The tech was trying to measure yet another insignificant (in my opinion, of course) part of her human anatomy.
“She moved again!” cried the tech.
We all laughed.
She put the curser over the femur. Or was it the humerus?
The screen read 17 weeks.
“So she’s four weeks behind,” I blurted out.
“We don’t know that for sure,” Katherine said. “There is a ten day margin of error, remember.”
“But she is four weeks behind,” I said again. I’m sure repeating my initial observation was an effective counter-argument.
I just couldn’t reconcile it. We were four weeks behind, not 10 days. And the slope of the line was not going in the right direction. I’m a numbers guy. If a two-week deviation was a cause for concern two weeks ago, and about as significant a deviation as our OB had seen in her 25-years of practice, I couldn’t fathom what a four-week deviation meant. I didn’t want to fathom it, anyhow.
After the appointment, with Google at my service once again, it was clear to me. Nasal bone, check. All four limbs significantly shorter than the normal range, check. All other measurements within the normal range and no telltale markers, check.
It was dwarfism. There it was, right in front of me. Poppy had a name to go along with her short bones.
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We went to go pick up our new car. Or our new beast, as it was. The shiny, sleek, 7-seat Buick Enclave would be able to hold our two car seats and our ever-amassing pile of baby stuff that was required on trips long and short alike. The compact cars were no longer cutting it, so we decided to consolidate our Seattle trips by picking up the beast at some point amongst our three appointments that day. We had a two-hour window before our next appointment, where the genetic counselor would tell us what we already knew; that active little Poppy would be a little person. We would have just enough time to pick up the car and bring it back to UW if we hurried, which would save us enough time to hit up the outlets in North Bend on the way back to pick up Poppy her very first newborn outfit. That would be our reward for surviving the emotional toll of the day.
After picking up the car we talked about Poppy over Subway.
Another kick. Apparently Poppy liked Subway too.
We could do this. Poppy was healthy. They were able to see her heart this time and it was fluttering predictably. She didn’t likely have Downs either, which was a diagnosis for which we had prepared ourselves. We could do this.
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The genetic counselor brought us back to a tiny room that had a terrible echo. We sat down. I could see her hands shake ever so slightly. She asked us what we had been told. What we knew. We told her everything we had learned over the previous two weeks.
She was impressed by our research.
She should have been impressed with Google.
“Well, your daughter is not doing well.” Those were her first words.
Not doing well as in she has dwarfism? Yes, we knew that.
“It’s not just the long bones which measure short. Her thoracic cavity also measures 17-weeks. Your daughter’s heart is taking up 50% of the space within the ribcage. Your daughter’s lungs will not be able to develop.”
Tears, already welling up in Katherine’s eyes, had broken loose and were making their way down her chin.
“But they could catch up, right? Theoretically. Did you get a conclusive look?” I was searching for something in which I could place my hope.
“The images were conclusive. I’m sorry. She is terminal.”
It was the T-word. We had prepared ourselves for Downs, Turners and Dwarfism. I was still holding out hope that she might just be short. We hadn’t prepared ourselves for the T-word.
In a daze, I don’t recall all that was said following. Something about her being able to survive just fine inside the uterus where she can breathe through her mom. But outside the uterus she would be unable to breathe, absent sufficient lung capacity. And then there was a hole in the heart. It was repairable with heart surgery; something that would require healthy lungs.
It was hard. It was weighty. It produced the first tears I’ve shed in some twenty years. If Poppy could only stay in her mother’s womb forever, she could be part of our family. She was so happy there. She got kisses from her sister, Ellie, near daily and mom and dad talked to her at night. We also knew she like Subway. And we liked Subway. It was a perfect match. We all knew that Katherine’s womb provided an amazing space for morning gymnastics. But she would have to be born, and when she was born it would invariably start a clock that would tick with every breath.
Two doctors later, each repeating the T-word, and each confirming upon questioning that the diagnosis was conclusive and that they were sorry, and we were on our way home. Me in the beast. Katherine in the other car. We drove past the outlets as we made the three-hour trek back to Wenatchee where we could process what we had heard. We were coming back to an empty, freshly-painted nursery. It was going to be Poppy’s room, though we weren’t sure she would ever see it. We were going back to a half finished playset where I envisioned her playing with Ellie in a couple years time. We were going back to our daughter, Ellie, who, despite kissing mommy’s belly daily, might only spend brief moments with Poppy. We were going back to a place where we would have to prepare and plan a burial for a precious little girl we had yet to meet but had the joy and pleasure of feeling within the womb. We were going to have to do all of this before having he opportunity to hold her and tell her how beautiful she was.
But we know that we are not without hope. We know that God is good. We know that his will is pure and we know that all will be made new in the end. I find it important to keep preaching this to myself, lest I get caught up in the danger of self-pity and the temptation of thinking that I am ultimately in control of even the smallest of life’s many details. The doctors who recommended abortion, they didn’t understand that abortion was not an option; that you, Poppy, are a gift and possession from the Father, and that the call to life is his and not ours to make. I am not in control.
Until all things are made new, we ponder the unknown. Will you, Poppy, live for minutes or hours? Can I hope for days? Weeks? A lifetime? At least two Google searches (if you haven’t guessed it already, Google and I have a special relationship) indicate that a diagnosis of lethal skeletal dysplasia, Poppy’s sentence, does not invariably produce death. Two such victims live on. Thanatophoric dysplasia, as the doctor stated, was Greek for death-seeker. But he didn’t know Poppy. Poppy is active and full of life. Poppy was a fighter.
Other stories indicate suffocation in mere minutes; But precious minutes in which the little one will wrap its tiny fingers around the mom or dad before peacefully closing his or her eyes.
While I don’t know when you will breathe your last, Poppy, I know that the one who breathes life into you is sovereign over all. Cognitively I know that God is both good and sovereign, and being both good and sovereign, he will heal you only if it is best for you. So while I don’t know whether you will be given the gift of life on Earth, I know that you will in fact be given the gift of life. While still grieving, this provides hope. More than anything, it is another reminder that life on Earth is not the end towards which we live, but a place we’ve been sent for a specific purpose. Life in the flesh is fleeting.
Selfishly hoping that God will work a miracle, we will install another car seat in the beast just prior to delivering. We will hope and pray for the best, recognizing that we have no control over your destiny and that our understanding is finite. You are in the good hands of the Father and the days of your life are known to him. But oh, how I want to bring you home, Poppy, where cuddles with mom, dad and sister will be abundant and Ellie will apply her kisses directly to your face. She will tell you all about animals. And doggies. And the noises doggies make. She might even tell you about the “monkey.” Curious George is a big hit in our house. Mom will do her baby swing and rock you into a blissful sleep as only she can do. Daddy will try to do his best not to mess up, but forgive him as he means well. There will be laughing, tears of joy and a dissipation of all the fears and tension that the terrible T-word brought. What a celebration we would have.
You grow that rib cage, baby girl. That’s an order. And if those ribs are not meant to grow like the rest of you, if the Father has bigger plans for you than simply growing a few silly bones, then we will grieve the loss but celebrate in your little kicks and gymnastics knowing that you are going someplace better; a place where pain is absent and true joy is overflowing. It won’t be easy. I refuse to lie to myself. But it’s a journey that will be complete with many graces.
I don’t know how we will do this; I only know that we will. And we will do it well because we won’t be doing it alone. We love you, Poppy. We love you today and tomorrow and forever. Should you not follow your daddy’s orders, and should your rib cage refuse to grow, I will long for the day that I get to hug you without care or worry about a ticking clock. That day will come. Until such time, find a comfortable spot and keep watch over us up there above the clouds. Your sister needs someone to keep her in check. And so does your mommy.
Until next time, baby girl. Love you lots.
What beautiful hearts you, both, have and thank you so much for sharing your heart with all of us! God is great and greatly to be praised, for you and your wife are an amazing testimony and reflection of “Who” He is! Agreeing in prayer with you for ribs to supernaturally grow to give room for lungs, but in the case God chooses otherwise in His wisdom, then we also pray for you and your family to be comforted. Love your hearts, they so reflect the heart of our Father in heaven. Love to you all, Kim Bartel