Four Letter Words
I grew up in a conservative, God-fearing, church-going family. Consequently, there were quite a few four letter words that upon pain of punishment were not to be uttered in our household. We were taught that these words were offensive and as such were not to be spoken.
As I’ve grown older, I’ve continued to abstain from the use of these words, but I have found a few other four letter words that pack quite a bit more danger in them. Two in particular I have found myself battling constantly on this journey with Arabella.
The first is fear. Before her birth it was the fear of the unknown, the fear of losing a child, the fear of how the scar of that event would trace itself across all days of my future.
And then she was born, all screaming pink seven pounds of her, sailing through apgar tests straight into my arms.
And then a whole other slew of fears came knocking. That first night in the hospital room, there with my husband, no monitors, wires, doctors or nurses, I couldn’t bring myself to put her in the bassinet. I was so afraid that something would happen. That her breathing would become labored. That her lips would turn blue. And there would be nobody to see it. And so I clutched fear and my baby daughter to my chest through much of the night. Finally around 3 or 4 in the morning, exhaustion and the fact that I had gotten no sleep the night before won out. I rolled that bassinet right by my face and reluctantly laid my baby girl down. And then proceeded to sleep fitfully, waking often to feel that miraculously warm breath exhale from her mouth.
As the hours wore on in the hospital, and I became more and more confident in the breaths of my daughter, much larger fears began to loom – what is her diagnosis? how is it going to effect her future? what kind of special care is she going to need? how is her heart? when will she need surgery? what will she look like as she grows? are we as parents capable and equipped to parent her well? how am I going to handle doctors and appointments and medications and therapies? me who has never even had a broken bone…
Fear swirled fierce in that hospital room – which is rather remarkable considering we had just witnessed a miracle. It was the evening of the second day, after breaking down in chest heaving sobs to my husband with a laundry list of all that overwhelmed, that I realized this fear, this fear that threatened to strangle, was being fanned by the enemy. And so in my weak state I immediately texted dear sisters in the faith to pray, and I turned on that playlist from Bella’s birth so lovingly crafted with your suggestions. I forced truths into my mind until the fear began to recede.
But like the tides, that fear threatens to roll in far over my soul again. and again. and again.
We meet with the geneticist and the skeletal dysplasia team in October. We’ll get more information then, but for now we have a likely diagnosis.
And in the darkness of the night, as I rock and feed and pray over the child in my arms fear threatens and the enemy whispers.
I fear the first time some child on the playground innocently and bluntly comments on Bella’s unique features. I fear not knowing how to respond, and how to talk through those comments with Bella. For now she looks cute with her rolled up cuffs on her shirts and her pants, but I fear the day she in tears exclaims that she just wants to be able to buy clothes straight off the rack like everybody else. I fear the day she comes home from school in tears because of the hateful things that were said. I fear she will not have the eyes to see her beauty when her beauty does not meet the world’s definition. When her legs are short, and her chest is small and scarred and her hands are different down to her fingernails. She pauses in feeding and flashes me a big grin, and I fear the day when people don’t notice the beauty in that smile, but rather the dental issues that she will likely have. And you all wonder and exclaim with me at her beauty, and her wonderfully-made-ness, but I fear the day when others will look at her and see nothing of that. And I fear my ability to teach her, to ground her, to root her in the fact that every bit of her was made with a purpose and that she is a beautiful vessel because she points to the glory of the Lord.
And following right on the heels of that four letter word fear is that four letter word pity. Pity is vastly different than empathy. Empathy says, I see your pain and I hurt with you. Pity says, I see your pain and there can be nothing good in that pain. Pity doubts the goodness of the Lord. And when I begin to pity my daughter, to feel sorry for the days and the comments and the potential hurt to come, I deny the tender, loving goodness of the Father who knit her. Who knit not only her physical form, but her spirit. Who will watch over, and protect, and mold, and shepherd her spirit throughout the years to come. It doesn’t mean she won’t have challenges. It doesn’t mean there won’t be pain, and hurtful comments, and stares and all sorts of things I would like with all my being to protect her from. But it means He can use all those things to shape, redeem, and craft her into a beautiful vessel. A vessel that knows her maker in such an intimate way that she can’t help but display His glory. Oh how that is my prayer for her!
Today I sat with my girl in my lap as the nurse attached all sorts of wires for an EKG. I whispered in her ear to calm her as they traced the pattern of her heart. And then I bent over in an awkward, I’ll feel this tomorrow, position over the bed as the tech did the echo. Shushing in her ear, keeping the paci in, praising her for holding still. And fear began to knock as I contemplated the long road ahead. The doctors and procedures and the surgery and the pain and the desperately wanting to take her place but not being able to. And as those fears began to swirl, I attempted to stab them with truth.
Weight gain wasn’t quite as hoped this week, so we’re adding another fortified feeding or two a day, and starting diuretics. The good news is her heart function, considering her defect, is looking quite good. So if we can keep her growing well, we can probably wait on surgery until the spring. We’ll continue our weight checks at our pediatrician’s office, and see the cardiologist again in a month to assess things. And we’ll try our best to keep our germ magnet toddler as healthy as possible.
And so we wait and see. And I fight the fight of faith each day. The fight to remember and to allow that remembrance, that personal experience of who the Lord is and what He can do, to give peace for this day. In the battle for truth, the song below has been on repeat in my head and on my computer this week…”make my heart believe.” Truth. It’s the only way to conquer those four letter words.
“You are my servant, I have chosen you and not cast you off”; fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Behold, all who are incensed against you shall be put to shame and confounded; those who strive against you shall be as nothing and shall perish. You shall seek those who contend with you, but you shall not find them; those who war against you shall be as nothing at all. For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you”…When the poor and needy seek water, and there is none, and their tongue is parched with thirst, I the Lord will answer them; I the God of Israel will not forsake them. I will open rivers on the bare heights, and fountains in the midst of the valleys. I will make the wilderness a pool of water, and the dry land springs of water. I will put in the wilderness the cedar, the acacia, the myrtle, and the olive. I will set in the desert the cypress, the plane and the pine together, that they may see and know, may consider and understand together, that the hand of the Lord has done this. {Isaiah 41}
We have had some dark nights of the soul in the past year, and it was this song we came back to time and again.
When our dear friend was diagnosed with cancer this year, it was this song we texted to them.
When I first read your requests for Bella, it was this song I thought of, and I often prayed for you and her while I listened and sang along.
Praying for you again. And will continue to do so.
Lord make our hearts and minds believe and KNOW that YOU are better than anything!!!
Again, thank you for sharing your heart – I think I cry every time I read one of your posts! But this time it’s because your fears hit close to home, having been born myself with several medical issues and “deformities.” I’ve had about 20 surgeries, the majority of which were before I turned 17 (and many were in the first couple years of my life), for cleft palate and lip and amniotic band syndrome. So I know the struggles of living with being different, and having the hospital as a seeming second home. There were definitely tough times, especially those first few years of school as I interacted with other children who didn’t understand and could really be cruel. BUT I can encourage you in this: All those struggles have given me incredible strength and faith. I would not be the person I am today without them. And I wouldn’t have it any other way. I am grateful for the way God made me, and it is especially awesome to see how He uses my disabilities as strengths to glorify Him. For instance, the main two things affected by my medical issues were my mouth and my hands, and those are the two things I use most in ministry as a worship leader at my church. [Did you know there are some piano pieces that can only be played with six fingers?!] So fear not, Arabella will come through this ok, and likely with a much stronger character and deeper faith than she would otherwise have had. She will learn to see herself as God sees her, beautiful and perfect.
I think the journey will be much harder on you. I, honestly, have blocked out most of the memories of my surgeries, and really only remember the good times from my childhood. My mom, I think, had a much rougher time dealing with me, and the constant doctor visits and physical therapies, etc. She hasn’t blocked out a single memory. If you ever want to talk to her, I’m sure she would be more than happy to give you a realistic picture of what it was like, as well as some encouragement from a ‘survivor.’ Let me know and I’ll get you her contact info.
So… now that I’ve nearly written a blog post’s worth myself, I’ll end by giving you a new four letter word: hope. I have hope for you and for Arabella, that you will see this through, standing on the solid rock of Jesus. May He be your comfort and your refuge, your peace and joy in all times.
Thank you for sharing your heart with us. Our family heard your story and began praying for you just before Bella’s birth. Since we are very removed from the situation, these posts helps us pray for and praise with you more specifically. Is there a post with more details of Bella’s condition/prognosis? I understand her small size and that she has a heart condition, but are there more specific things to pray about for now and long term?
Hello there, my name is Kristy. I was sent your blog from my Mirabella ‘Bella’s’ teacher Nancy who is an Aunt to one of your friends who lives in China. Nancy said that you and your Bella reminded her of me and my Bella. I have poured over your blog, I can relate to much of your journey. I have enjoyed learning of your great faith and yes, I agree fear is a four letter word. I know we have much in common, loving Jesus is one, a special daughter named ‘Bella’ another. I’d love to chat sometime if you’d like. We are also in Washington State.
~Kristy
I too am the mother and spouse of loves with challenges. My son & husband have Osteogenesis Imperfecta. I know well of this fear you speak of but also of the sweet peace Jesus will give when we turn to Him. I will be praying He sends you peace in the hard times when you are too burdened to look up and ask for it. Yes they experienced some cruelty from adults and children but both came out stronger for it. They are both amazingly strong, well adjusted , compassionate Christian men. I know that God is going to be right there with your Bella and guide you both through each hurdle just like He did with all the sweet miracles of her birth. Fear not the Lord God is with us:)
I don’t really know where to start. In one sense I can totally relate as these were many of the thoughts I had concerning my daughter a year ago. On the other hand, I have seen God be faithful over and over and over again and know that you will all be ok. You are enough- with Him. You can do this- with Him. Bella will bless so many people, I know it seems crazy, but it’s true. People who take the time to really “see” her will see the beauty God placed in her. If you would like to talk at all just let me know. We are 17 months into a very similar journey. Praying for you all!
Hello Katherine:
I found your article in the Wenatchee World this evening, and would like to introduce myself. I live here in Wenatchee as well. We were blessed with an adorable baby boy in March of 2007 …. this adorable kiddo was born with Achondroplasia Dwarfism, the most common Skeletal Dysplasia.
Arabella is absolutely precious! While no two journeys are the same … know that you will become Arabella’s biggest advocate, and as time goes on your fears will lessen as well as the many, many doctor appointments. Caden is a confident, witty, third grader, who everyone loves … and he has yet to be teased because he is “different”.
We see several of the Doctors at Seattle Children’s and I would love to share my recommendations with you …. Also, Little People of America is a truly wonderful organization, with an active, local chapter just two hours away!
I remember when we first received Caden’s diagnosis, people were reaching out to us left and right, it was a lot to take in and difficult to process it all … however, when the time is right for you and your family, I would love to meet you in person and share our stories.
Trisha
To Katherine and Jeff,
I just read your story, published in The World, to our ten year old son, Robert. We are touched by your courage to follow your hearts and God’s Will. Bella is beautiful in EVERY way, as is her sister Ellie! Robert wanted me to tell you that having six fingers on each hand is just the way God made her and they should stay there, that it’s like being a super hero for God! It brought tears to my eyes and made me realize that, despite the fact that kids can be cruel, there are so many more who aren’t.
Miss Bella and your wonderful family have a purpose!
Thank you for sharing your story!!
You brought tears to my eyes, Mary! Thank you so much for sharing what your son had to say! We think her extra fingers are pretty special as well. 🙂
It’s so great to hear from you Trisha! We will definitely need to be in touch soon!
I am so inspired by your family’s journey. I want to encourage you to surrender the fear to the Father who is has all the days of our future in His capable hands. I am reminded of the words to an old song, “Because He lives I can face tomorrow. Because He lives, all fear is gone. Because I know He hold the future. And I can face uncertain days because He lives. Fear of the yet unknown can / will rob you of present joys…..please do not let it. People will say things and stir the pot again, but you know where to leave the fear. I also am a lover of Isaiah 41:10 and actually call it the nurse verse, to encourage patients facing the unknown. He who has been faithful, will BE faithful. I have found this song to be a grounding reminder of this truth: What I Know..Tricia Brock
https://www.youtube.com/watch?v=8YRko54M3_A&index=9&list=PLvZpkGUMbCI0yyPpxJTHFrxow2n_p2Kua