The truth is that I hate crying and especially hate crying in front of other people, including my own family. The truth is that I avoid emotional situations – which means sometimes I avoid honest conversations with myself and others. The truth is that even when I am honest, I hold people at a distance by adding a positive spin on things and saying things like, “I’m know this next surgery of Nora’s is going to be really hard but I know so many people that have it so much worse and I’m thankful for our support system…” blah, blah, blah.
truth is that every fiber of my being wants to retreat into a self numbing fog
and that most days I do exactly that. But not today. Today I need you to see
today I need you to know that my heart is broken. That I lie in bed at night
when everyone else is asleep and cry. I cry for my daughter. I cry for her
pain, both physical and emotional. I cry because at 4 and half years old she
says things like, “I wish my nose wasn’t flat”. I cry because while I know her
cleft isn’t my fault, I can’t help but feel that it is.
cry because this world is broken and I crave heaven. Not because I want to die
but because I crave a world where she doesn’t know about bullies and stares and
insensitive comments about her appearance.
I cry because my heart is broken.
truth is that on those nights when I can’t sleep, I go into Nora’s room, kneel
beside her bed and silently plead with God. I pray that he will protect her,
that he will make her secure in who and whose she is. I pray that he will show her
unimaginable love that she cannot doubt his presence. I beg that he will give
me the wisdom to be the Mom that she needs me to be every single day. I pray
that I won’t fail her.
I need you to see our family and to really see Nora. To understand that while
her cleft is not life or death. While it’s not forever and yes there is a
“cure”. I need you see that the pain is real and raw and affects us more days
than we let on.
I need you see all of that because I need you to pray for our family. Nora’s next surgery is scheduled for October 18. They will be doing a tip rhinoplasty which will help lift her nose (slightly) and help open her nostrils so that she can breath and clear her nose more easily. Please pray for wisdom and skill for our doctors and nurses. Pray for healing and most of all pray that God will comfort our precious Nora.
January 21, 2016. That was the last time there was a surgery in our family. Over 3 years ago. 2017 was the first year since we started having kids in 2013 that no one had a surgery. Most Mom’s never have to make statements like that, it never even crosses their minds to count the years and days between surgeries or procedures or doctor appointments, but those of us with health affected kiddos do. We know to take the little victories and learn to celebrate them, never taking them for granted.
Yesterday we learned that our surgery free streak will come to an end this year. Our cleft cutie, Nora, had a mid-year Cleft Care Team checkup. Overall the appointment was filled with good news. She passed her hearing test with flying colors and she is growing normally. Then came the moment when the doctor told us that the surgery we thought was one more year out, needed to be scheduled this fall instead. They will be doing a tip rhinoplasty which will lengthen her columella (the skin that is between your nostrils) and lift her nose to make her nasal holes larger, helping her to be able to clear her nose more easily. To be clear, this surgery, like all the other ones our kids have endured, is not a bad thing. It is a great thing and will help improve her breathing, but it will also change the smile that we have come to love.
The news hit us a lot harder than we expected. For me it was a combination of not being prepared for the news and maybe a little PTSD (post-traumatic stress disorder). Nora’s first two surgeries went great, but the recovery was terrible for her and as a new mom of 2, I really struggled with guilt and fear for my daughter. I will NEVER forget the first night we came home after Nora’s lip repair. She slept through the night without making a peep. I kept checking on her in the night but just figured she was exhausted from the stressful night in the hospital. The next morning, I went into her room to wake her up (which I never had to do because she LOVED food) to find her white as a ghost. My heart literally stopped in my chest and then I sprung into action calling her doctor to get her readmitted. I knew with every fiber of my being that something was wrong.
At the time we were at a Children’s hospital system that didn’t have an ER and it was a Saturday morning. I had to BEG for them to let me readmit her and they ended up letting me in a back door to do so. She was very dehydrated and after holding my screaming daughter to my chest while they poked her over 20 times to get an IV back in, I was traumatized! Nora’s second surgery went better but only because I refused to leave the hospital until she would consistently eat!
As many of you saw from my post on either Facebook or Instagram, I really struggled yesterday. I always knew the facts of Nora’s health journey. I can give you the non-emotional version in 5 minutes flat, but yesterday I let myself lean into the emotional part of the journey. I let myself grieve (again) for the simple childhood that Nora will lose. I cried when I thought about how to tell her she would need surgery and the enviable questions that she will have; questions that I will not have answers for. I cried thinking that this time she will be able to tell me about her pain and that she will know and feel fear. I cried when I looked at her perfect little smile, that lights up her WHOLE face and how it will change again after this surgery. I cried thinking about the new scars she will have. And then I cried for myself, because being a Mom to a little girl who will need multiple surgeries is hard. Not being able to take her pain away or fix it, is hard. Letting go and trusting that God will provided again, is hard.
Last night as I was mindless scrolling though Instagram, I came across a verse that our church had posted,
“Trust in the Lord with all your Heart, and lean not on your own understanding; In all our ways acknowledge him, and he will direct your paths.”
I have read that verse hundreds of times but last night it was a smoothing reminder of his faithfulness. I will never understand why he allowed both of my girls to be born anything but flawless, but I also know that I have no reason to doubt God’s goodness. I know that he will provide for us, and I know that at my weakest moments, he will pick me up and carry me through. I want both of my girls to understand, that no matter the journey, God will be there with them, even when I can’t be.
As a Mom, I will do my best to teach them strength, courage and grace; but I also know that the best way to teach them those things is by setting the example. Please pray for my family as we process this next step. Pray that he will give the words to explain all of this to her in the coming months and pray that he will lead our paths, helping us to set a good example for both of them. Thank you and God Bless!