So one year ago today we were awoken by nurses at Lurie Childrens Hospital in Chicago coming in after only a few hours of sleep at about 6 am to wash Adler’s hair with special shampoo in preparation for his permanent shunt surgery. Our son was going to have brain surgery. Holy shit. He wasn’t allowed to have any more morphine and with three times the normal amount of fluid on his brain his headaches were awful. Making him vomit and faint. He was so dizzy all the time he refused to walk at that time.  He was crying in pain.  At 7 am there was a nurse shift change and we met an angel. Her name was Krystal. To this day I believe she was divinely put into our life. The way she handled Adler was so gentle and with such love and genuine care and concern. She was beautiful. He was in so much pain and she just picked him up and held him close to her chest and then softly sat him in his wheel chair and he stopped crying as she wheeled him around while Aaron and I met another angel, Dr. DiPatri the neurosurgeon who would be performing Adler’s shunt surgery. He saved our son’s life that day. He’s a large man with big hands. I remember shaking his hand wondering how such big hands could do such intricate work. And out of all the doctor’s we had met I trusted him immediately. We were going to hand over our son to him. He explaied the surgery to us again and with hesitation, fear and a million other emotions we listened and tried to think of questions to ask coming up with only a few. Adler was taken to the surgery prep area about an hour later and finally given something to calm him and we sat with him next to the bed.  He had all his special friends (stuffed animals) and his blanket and he wasn’t scared. I was.  I was terrified. They said OK, say bye to mommy and daddy and we kissed him and hugged him and I remember even though I was scared and the tears welled in my eyes I knew he was going to be OK. We walked out trying to breathe easy and not fall apart. We ended up at the gift shop almost lost feeling and got him a few new stuffed animals and headed back up to the waiting area. It was a small room with a bed in it and 2 chairs and a TV.  We waited, made a few calls and waited some more. My parents showed up and we waited with them. The doc came in after a nurse did and said everything went great and he was doing just fine and was in recovery and as soon as we could see him we could.  I remember walking briskly down the halls to get to him.  Finally seeing him and he smiled. He had bandages and shaved spots on his head.  His hair covered in orange iodine.  But he smiled.  I kissed and kissed him. My baby had brain surgery and was OK!!!  He was OK. We remained there for 5 more days as he recovered and stared to walk again and his headaches seemed to all but disappear along with his dizziness. He was like a new Adler.  The pain in his buttocks did not dissipate though, but one thing at a time.  We wheeled him in there dying and he walked out alive and well……until our next trip there a couple weeks later. So today we celebrated with cupcakes and love for our boy and his one year shunt birthday!!!!  Who knew the emotional journey we were about to embark on???  We have come so far in a year.  And we know we have a ways to go but we go together and sail on!!!  Bold As Love. Sailing through the storm!!!


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