Although Jenny lives in the midwest and we’ve only seen eachother in real life a few times, I consider her very much a friend.
The birth of their first baby brought with it some significant suprises…and the way that Jenny describes how she has processed through it all is such a treat.
I, for one, am duly convicted.
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I was in college when I saw a woman whom I considered truly ugly. Her face was grotesquely deformed and discolored; her hair, unruly and frizzed out; her skin complexion was bumpy and dry. I never knew her, we just happened to be studying at the same bookshop downtown. Unable to keep from staring from a distance, I felt such deep pity, as I could only imagine what her life must be like: solitude, no prospective husband or life with children, rude stares and comments undeniably. For the first time in my life, I asked God sincerely, “Why would You make someone suffer through life that way? If You could have prevented her deformities, which You could have, why didn’t You?” The question burned in the back of my mind for the next couple days. What was the point in allowing deformities and sickness and diseases invade our bodies? Wouldn’t it just be easier, less hurtful, if everyone could be normal and beautiful, or at least simple to look at? Another rendition of the age-old question, “If God is good, then why does He permit evil?”
Fast forward three years. My husband and I sit in the doctor’s office at Maternal Fetal Medicine, waiting to hear the news if indeed our in-utero daughter has developed a cleft lip and palate, or not. As the doctor arrives, I know right away that the clefting has been confirmed. She sits by my side, gently explaining the birth defect, the possible problems, the fact that Bella’s is very severe. She encourages us to gain knowledge in the area of cleft lips and palates via internet or reading. “You don’t need to worry much, though. This all can be fixed. The surgeries today are amazing.” (If I had a nickel for every time someone has said that last phrase to us, I’d buy myself a Dyson Ball vacuum!) We simply nodded our heads and agreed. Yes, her face could be fixed by the help of amazing surgeons. We were grateful.
Fast forward four months. I met my daughter face to face. She was absolutely beautiful. Perfect skin; tiny, little bubble butt; her head crowned with dark silk. I remember having one, brief thought as to what was hanging off her nose?…. but then, I didn’t care anymore. I was absolutely head over heels, in love, so proud of our precious gift. We savored those first hours, days, alone in the hospital. I knew she was different than other babies, but I didn’t want to come face to face with that reality yet. I didn’t want visitors popping through my hallowed bubble world, asking questions, staring, wondering… I wanted everyone to see what I saw: a perfectly knitted-together child, beyond lovely, our blessing.
When our girl was four months old, she underwent her first plastic surgery – a three hour procedure to connect her top, side lips and create an upper lip. My husband had returned from a deployment the night before and was still trying to adjust to Daddy-hood again. The emotions that washed over us as we saw our daughter, fresh from surgery, were akin to nausea. I couldn’t touch her. I couldn’t hold her. I didn’t want to feed her. Her face wasn’t my daughter’s. She wasn’t my baby. A nurse brushed by, noticed us standing stock-still by her bed. “She looks good, doesn’t she?” the nurse murmured to us in a kind voice. Turning my watery gaze to her, I was dumbfounded. Good? I wanted to scream. Good?? She looks awful! That’s not my baby! You changed her face – you deformed my precious angel to someone I don’t recognize! It took me three days to finally become comfortable around Bella again, to know and feel that this was my daughter.
A mere two months later, she underwent surgery again. This time, even more drastically. A plastic stint, the length of a quarter, was shoved up her nose to help create the right form. This needed to stay in for a month. Her mouth, once so wide and full of smiles, was sewn into a tight, little “o” – stitches lining her upper lip. Her face was swollen and disfigured. I remember checking her arm tag numerous times to assure myself that this, again, was my baby. I nearly threw up seeing her lying on the bed, sleeping off the anesthesia. This couldn’t possibly be my child. That wasn’t her face. This go-around, it took me a week to recognize her and love her new face. Internally, my husband and I grieved the loss of each “Bella.”
Fast forward six months. We were meeting with the surgeon to prepare for Bella’s fourth surgery – to repair her cleft palate. This time, no outward changes would take place, but still, according to cleft lip/palate veterans, this was the most difficult surgery of all. As the doctor talked us through the impending procedure and what the recovery would entail, it was all I could do to remain civilized. A great urge to cover my ears and sing out loud, so to block every word he was saying, sprung upon me.
I don’t want to put her through this again! I yearned to plead. She’s fine. She doesn’t need anything else. She doesn’t need any more pain or discomfort. I don’t want the recovery period again. I don’t want to see her lying on that hospital bed, listless and drugged. I don’t want the tubes. I don’t want any of it. Can’t you just leave my baby alone? She’s perfect – just the way she is.
As those selfish and incomplete thoughts of a hurting mother crossed my heart, God spoke to me in two different ways:
He whispered to my aching heart, Do you now perceive how I love YOU? I am broken. I am bruised and scarred. I am incomplete in so many ways, lacking in numerable areas. Yet, He loves. ME. He loves me because, simply, I am His. He created me, in His image, by the work of His hands – to Him, I am perfectly beautiful. Bella, as my daughter – flesh of my flesh – is perfectly beautiful to me. Her face, created as it was, was always a glimmer of sunshine to me, and I felt no need to “fix” it. Yes, I knew it was the right thing to do for her, that she would appreciate it, and that society would accept her more with a “normal” face. But, she was always complete to me – totally and wholly finished, cleft lip and all.
Then He urged me one step further: See others this way. Ooh. That’s hard. We always hear (and say!) that it’s not on the outside, but the inside, that counts. Did I believe that? Now, with a daughter who looks different than others, I believe it wholeheartedly. She is human– a child- with feelings of anger, happiness, frustration, glee. She needs love, discipline, consistency, affection just as much as the next kid. While the majority of people treat her kindly, we’ve had our encounters with a number of people who stare her down, call her weird, whisper behind our backs, talk about her as if she cannot hear, tell me that “her face can be fixed” if I just get it checked out. More than anything, those remarks and stares burden my heart. Because what their comments mean to me is, “Your daughter isn’t human enough to be treated with decency.”
I cannot answer fully why evil exists with a good God. Yet, I know God is good. And every work of His hands is good. Every special needs child is fashioned perfectly by Him in the womb and has a purpose outside the womb. Just because they may not live a life that is “successful” and “full” by society’s standards, who’s to say their life is not whole and brilliant? I pity myself, now, for assuming that “ugly” woman’s life was dull and lifeless. How narrow my view of life a mere four years ago. We praise God for Bella’s cleft lip and palate, as it is teaching us how to love fully and deeply. I eagerly await His plan to bring glory to Himself through her intricately fashioned face.
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Rather than fundraise for an organization, Jenny has chosen to fundraise for a specific family…buried under a mountain of medical debt.
You can read little about Jackson’s Smile HERE.
And the giveaway???
It’s a DOUBLE whammy this time!
The ***FIRST*** randomly chosen winner will receive an 11×14 print of THEIR CHOICE from the Jackson’s Smile gallery!!! (a $95 value!!!)
Aren’t these BEAUTIFUL?! This is just two of the dozens of images you can choose from!
The ***SECOND*** winner will get…
THE cutest hoho monster Ev.ER. (a $30 value!) from the ever so talented Chrystal of little bit funky.
Seriously, I’m about postive my kids *need* one of these. Doesn’t he just look so snuggly?!
So, how do you win???
1. Join the Life.Rearranged Facebook Page. Be sure to leave me a comment in this post letting me know! (1 entry)
2. DONATE HERE to Jackson Whittington’s family. ***Please be sure to donate through our GiveForward link if you want to be entered in the drawings and NOT through Jackson’s website***. (See the FAQ for the whys). Every $1 you donate, gives you 1 entry. (unlimited entries!)
No purchase necessary to win.
No, you won’t get to pick which item to be entered for…I’ll just pick one winner and then another. Easier that way, k? Thanks for understanding!
Can’t wait to see how much we raise for little Jackson!!! :)