It’s a long drive from Phoenix back to home, luckily it’s almost all freeway and usually in the middle of the day so it isn’t an awful drive, just a long one. While I am always thankful for clear roads (strangely my patience seem to do better with those) I am even more thankful after tough appointments with Lily for them because driving and sobbing at 65 mph is not strongly recommended, especially not in heavy traffic.
I remember the first time this happened, Lily was 5 months old, I walked at a super human pace carrying a heavy Lily in her infant seat from the doctor office to the outdoor parking garage elevator trying to smile at the strangers for the eternal 30 second ride down. I then race to the car, buckled Lily in and sat in the driver’s seat, started the engine and dropped my face to my hands, loud sobs escaping as I hear the doctors words ring in my ears “yeah, she can’t see very well”. She was 5 months old. We were slaying the seizure beast and now this. This?! My heart ached in a way I wasn’t sure how it would ever recover. I sucked in some air and put the car in reverse and drove home. And side note, found a kinder, way better pediatric ophthalmologist.
The second time I remember I was driving down the I-10 my ears rang as I heard his words over and over again. My precious girl at that time was now 3 year old and in her car seat sleeping while I frantically wiped at the hot tears rolling down my face “she’ll never walk, she doesn’t need those braces”. I had walked into that appointment with a purpose and hope and he took that hope ripped it in shreds as casually as we would have talked about the weather on a Tuesday morning. I spent the rest of the day broken and angry. Also still determined and she got the braces and lost that Doctor.
The third time was many years later and was when our trusted and beloved neurologist recommended we meet with a palliative team just to make plans we hope to never need. She was soft spoken and tender hearted as she told me we should do these things now when things are good and minds and clear and we can pray those plans can stay in the cupboards and never be pulled out. No matter how tender she was, no matter how good hearted her intentions, no matter how responsible and real those things were for her to do as a professional, no matter if I knew these things as facts tucked back in the very furthest part of my brain, they never made it to my heart and so then when she said them out loud, well out loud changed everything. I was sucker punched, devastated, I was blubbering, sobbing and driving with shaking hands and all I can really know is I am so thankful Jesus took the wheel.
(I have to add not for literary sake, but for the sake of my friends and family reading this, this appointment was necessary, it just sucked. Because of that appointment we met a wonderful doctor whom I am glad will be with us if ever needed, she hooked us up with the Ryan House and we got a Disney Cruise from Make a Wish…. The appointment sucked. Hard. But that is the reality of this life. Sometimes things suck hard and we just have to move thru it. It is in the past. And God forbid we ever need those services, we are set. But I would also like to add I see in the future, Andrew, Lily and me driving around the US in an RV. She is in our retirement plan. Just thought I’d let you all know that)
And all this to lead up to telling you all about the last time I spent my drive home in tears and that was just this past November 7th2014. This was a routine appointment where we would get her an X-Ray and check her spine. We’ve been doing this for many years; I’d venture to guess to say at least 5 years. Each appointment is the same, so many degrees we will keep watching her. She has been given braces but the scoliosis she has is neuro muscular and there is no stopping it. We have been told surgery is in her future but we were thinking more like age 14. Except for in Colorado when we went to the CDKL5 clinic, they wanted her to have spinal surgery last spring, but we preferred to trust what our surgeons here thought and do that major of a surgery close to home. But the surgery is another little piece of fact tucked in my brain that never ever has swam down to my heart, until November 7th when Dr. White walked in and said “she’s over 50 degrees now. We need to schedule her surgery”.
I sat there. I stared at him. I waited for the mumbles coming out of his mouth to make sense. When they finally did it seemed like he was walking out the door before my mouth opened to talk. I sat there. His PA came back in to give me something and I asked for some literature on this surgery. I needed something in my hands, something to absorb in my brain. I had no idea what we just all talked about. She left and came back and handed me some papers.
That was 4 months ago. I have spent a lot of time researching, talking, praying and praying and praying. I have had my nearest and dearest been praying with me and I am feeling peace about it… now. I have a wonderful large network of amazing people whom can answer my questions because they have been there. On Wednesday (11th) I will tour the hospital with Lily and I will be able to speak with recovery nurses and there will be a mom who has been through it and she will be there to answer my questions (poor woman to have to answer all my questions). We are fortunate to be able to have the expertise of Phoenix Children’s Hospital just a teary bit of a drive down from our home. I am doing everything I can to make sure we are not blindsided this surgery. I have barely just started talking about it publicly and that is why I have been spending a week writing this post, I know it is time to share, but I guess I had been waiting for the right time that seemed to never come. So I am forcing it.
This is the last thing in the world I want Lily to go through. It is the last thing I earth I want to go through. It is something I would only speak in small increments about. I texted my friend “Lily is having spinal surgery. I don’t want to talk about it.”
But I have come a long way from then.
We are ready as we can possibly be. April 7th at 7am she will be having major spinal fusion surgery, approximately T2 to L2. She is expected to there a week if all goes well and full recovery will take about 3 months. She will finish out the school year at home. This surgery is necessary for her future health and we are preventing a lot of bad stuff (proper medical term) by doing the surgery now. I have come to a complete sense of peace at knowing this is the right thing to do. Am I still scared sick, totally, but we have faith in a God who has walked with us every single step of her journey and he isn’t going anywhere now. I ask all of you to keep her and us in your prayers, as hard as it will be on Lily, Andrew and myself, I know Andi and Oliver will feel this deeply as well. Our family life will change during this surgery, recovery and healing time and they need to know how important they are as well.
I know there will be many other teary drives home in our future, but I am glad we have the people in our world who are here to soften that fall and help us pick up the pieces. God is good and we are in his strong and soft precious hands.
Calm Amongst the Chaos 
Hi Kim, i've been following for a long time. We went through bilateral hip surgery and lengthenings, which is different but still terribly hard. i will be thinking of you all on that tough day(and the night before) and praying that Lily comes through like a trooper and that her recovery is uneventful. You probably already know this, but do not be shy about speaking up for whatever Lily needs(i.e. pain meds), be that pain in the a**!! sometimes, it's the only way. PS I am a nurse, lol