** I started this post yesterday, July 13th, and found myself so overcome that I could not finish it. Today is a new day and here I am back at the computer determined to finish what I started. Better late than never right? **

Two years ago today our world stopped spinning. For all conceivable reasons we felt the grinding halt of something gone terribly wrong. Our daughter, Kyleigh Morgan Teater Schmidt, made her entrance into the world as peacefully as one could have hoped for. No resuscitation, no oxygen, no “issues”and no panic, for the moment anyhow. At 8:17 am she entered the world and we all breathed a sigh of relief. Troy accompanied her to the nursery I was left behind in surgery (snoring through my c-section as it would be). By the time Troy was able to leave Ky again it was nearly an hour later. All smiles he entered the recovery room and said “Her heart is GREAT, she looks perfect, but she has no butt”. It was one of those surreal moments that you have flashbacks over. Those ones you see in your head and can never quite get rid. Those moments that are so painful that your heart guards against feeling anything because it knows that the pain of it is something that no one could bear. In a single bat of the eye and one pounding heartbeat later Dr. Y (Dr. Brad Youkilis) entered the room…. I will never forget the look on his face. The look that said.. “its not ok” even though he tried to reassure that they were taking good care of her.

I remember Dr. Y saying that many kids with Ky’s “issues” also had a TEF. I asked what happened if she had a TEF… he said nothing but his head hung low and as he looked at the ground my heart fell. “Its not good”. He went on to explain that they were currently trying to get a tube down her throat to be able to drain her stomach and if the tube passed then that was a very good thing. As quickly as he came he was gone. As I watched him and his white coat disappear out the door the panic set in. It gripped my soul and lodged itself in my throat. It grabbed the breath and tore it from my body. Troy and I were left to wonder what was really happening in that NICU.

This must have been when my “inappropriate” responses began. (They are rooted deeply. LOL) I can remember my reaction to this situation being: “How do you not have a butt?? I thought that was standard packaging”. I laughed. I couldn’t find it in me to cry. I laughed. “Only my kid” I thought to myself. I laughed again. To this day I continue to laugh because that is how I deal. That is how I make it. Truthfully what is there really to cry or be angry about? There is a song that says “Sadness is just love wasted…” and its so true. I would rather spend my energy trying to find a way to “fix” things.

That is not to say I don’t loose it on occasion. I do. I cry in private… here in my home, writing my blog postings. I cry late at night after all the nurses are gone from our room and Ky is asleep. I stand beside her bed and cry. I cry in the recovery room after surgeries when the curtain is pulled and no one is watching. In the shower with the water falling over me I cry and hope that the water will wash all the heaviness and heartache away.

Although it felt like an eternity later Dr.Y reappeared in doorway and explained that the tube went down just fine. He recounted to me that the entire room had breathed a sigh of relief when the tube passed. They had all been holding their breaths and hoping.

Much of the next few days are a blur to me. I remember snippets of time in the NICU and her first surgery but we honestly did not “experience” it. Mostly I remember the kindnesses that were shown to us throughout the entire time. I do remember an awkward doctor who bluntly stated that Ky had Spina Bifida and in all my life before and since I have never felt ILL over anything. I nearly vomited on his nice italian leather loafers. I had a picture in my head all of the sudden of what our life might become. Looking back, the past two years have been nothing like I imagined. They have been EVERYTHING that I wanted and NOTHING that I wanted all at once. The overwhelming, fear, joy, peace, disdain, triumph and struggles have at times been overwhelming but we have been blessed with so many people along the way to help hold us up when we couldn’t hold ourselves.

So… to all the amazing people who have been there. Since the start or have joined our journey along the way. This is for you. THANK YOU…. we would NEVER have made it without you.

Then:

Now:

Now… for the part of the post that I could not make it through…. (get the kleenex… you have been forewarned!)

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