Updated: Sep 16
I am not even sure this is going to be a coherent writing because my mind is spinning in a thousand directions, I thought to myself I would wait days or even weeks to put this out there, but I am so lost. My mind is scrambling around today. I woke up this morning with what I can describe as an enormous weight on my heart, I just woke up feeling heavy. I did pretty well yesterday after our scan and last night at church, I did not cry and kept telling myself this is going to be ok, she will be ok at the end of this, and I still keep repeating those words over and over in my head. The honest truth is I am broken, my heart is broken and I fail so miserably at casting my fears upon God. God tells us so many times over and over in scripture that if we give our worries to Him, give our fears to Him, He will settle our hearts. I want that so badly. I want to be one of those believers (like the people I shared links to in my last post) who just find joy and are able to let go of the pain in any circumstances. I want so desperately to do that and I cannot figure out how to just let go and let God. I feel like I am failing in my faith with this, I know He can heal me of all fears and worries because He has before, so why do I struggle so much with holding on to the fear, why do I struggle so much letting it go? Why do I settle in the fear of what is happening instead of being thankful for what is not happening? I should be on my knees thanking God that our baby’s heart looks normal, her growth looks normal, and we have been told the doctors see no reason this is anything more serious than an isolated defect. Why am I not rejoicing in thankfulness but instead panicking in the diagnosis?
I am a worst case scenario type of person. When I am given bad news, my mind immediately jumps to the worst possible outcome and then back tracks to the other possibilities and sometimes my mind never back tracks and it just sits in the worst and then my mind piles on more and more scary thoughts. I wish I knew why I was like this, I have not always been this way, but somehow now this is the person I find inside myself.
Finding out yesterday with 100% certainty that our daughter has a bilateral cleft lip and a cleft palate has just shook me to my core. I saw the cleft lip immediately when the sonographer found her face and it looked so much worse than I thought it was going to be, on her right side it appears she has no skin under her right nostril at all, on the ultrasound it appeared to be a complete black hole from where her lip would be all the way to the curvature of her upper nostril. She did appear to have some skin under her left nostril leading from the hole that would be her lip to the bottom curvature of the nostril. That black and white image is burned in my mind, I can’t get it out, and I can’t seem to think of anything else but those black holes in my baby’s face.
The doctor was able to scan and get a cross section photo of the palate and an oval shaped black hole appeared there as well concluding she also has a cleft palate. This news was really upsetting to me, all my worst case scenario fears about Nasogastric tube feeding and NICU stays all just seemed like a rushing reality. This means more surgeries including bone grafts as she gets older and possible hearing loss, speech therapy, and feeding therapy and it just really slapped me in the face.
Again, I know I should be thankful that my daughter will live through all of this, that even though she endures many surgeries throughout her childhood that she will have a typical life, she will be able to play sports if she chooses and she will be of full mental capacities and can be whatever she wants in life, but somehow I just cannot get passed the painful sadness that she has to endure this, that she has to experience pain when she is so tiny and helpless. I am fearful of her pain, I am fearful that I am not strong enough to watch her challenge through this, I am fearful of what is going to happen to us financially with her medical care, I am fearful of losing my job which feels right now like a guarantee to happen. I am fearful of what this will do to our oldest daughter, to see her sister go through this, I still don’t know how to best explain this to her. We have showed her some pictures and told her that her sister will be born like the babies in the photos, but how do we explain to her that God made her sister this way, how do we explain to her that even though God made her sister this way, in order for her sister to have a normal life we have to change the way God made her, that just seems so heavy to try to explain to a four year old.
I wish I had the peace that I was proclaiming I would have, but I don’t. I still believe in God and my salvation. God has not changed, He is the same yesterday, today, and tomorrow, and I place no anger toward Him. I just pray He gives us strength and peace, I pray somehow I find a way to give my fears to Him. I pray that He is with our daughter every moment, I pray God is specifically and divinely guiding the doctors’ hands as I give my child to them over and over through her life.
If you are unfamiliar with bilateral cleft lip and cleft palate I have found two videos that are good expressions of what our daughter is facing. Most are familiar with the Robertson family, this video is a short video about Mia Robertson, and our daughter’s cleft is the same as Mia’s (bilateral cleft lip and palate).
The video below I shared in my last post, I watch it over and over because it gives me a really raw vision of what I will be seeing and doing with my own daughter. After seeing Vivianne’s face yesterday it looks like her bilateral cleft will look very similar to Sawyer’s. If you want to see the process of the first months of life this is the best representation I have found. I also follow this mom on Instagram, her IG name is hismiraclesmile. I love going to her page and seeing this little guy, now around 18 months old, is walking and being just a typical toddler. It is very encouraging to see. Please take the time to watch.