Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.
Saturday, October 12, 2013
Hello, poor ol’ abandoned blog o’mine. I’ve returned for what could be a brief stint. No more grand promises of keeping up with my writing. I’ve grown smarter than that.
Today, though, I need to write. I have so much swirling around inside me. You see, it was one year ago today that I sent my baby girl into the operating room for her 50th surgery. One year ago today, she had a “temporary” shunt placed. Only one was placed that day because that’s all he could do. She needed three; she’s always needed more than one to survive. She’s a complicated mess in that little head of hers and one just doesn’t do the job. We (and by we, I mean he being kind pretending that I actually had a say in the matter) also opted for a pleural shunt this time which probably wasn’t going to work, at least not for long. This surgery would be the finale to a three month battle during which we came so close to losing our precious girl several times. It came after several ‘sit downs’ with our neurosurgeon discussing the options (or lack thereof) and the after hard question was raised – “How far do you really want to go?” The outlook was often grim and many days were very, very dark during those three months.
October 12, 2012, we had some hope. We had our two favorite surgeons poised and ready to place a ventriculo-pleural shunt that was meant to stay in place for a brief period while her tired and damaged brain took a little more time to heal so that a permanent, multi-shunt system could be devised and placed. In the days following surgery, we hit a few snags, but overall, our little Noodle rallied. Dr. B made it very clear that he was guardedly optimistic that this shunt would give us about a month or so and that we needed to be prepared to walk this road again soon. Over the coming weeks, we were watchful and stayed prepared. No plans were made, the suitcases stayed packed. We planned on spending the Holidays in the hospital.
November came and went, then December and January, February and so on. We dove into therapy and Noodle worked harder than ever to heal. We've explored several alternative treatments as well. It is now one year later and while we have questioned the function of Noodle’s shunt a few times over the year, we have come to trust that beautiful piece of hardware more and more. When she falls ill, I find myself jumping to other things that could be wrong as a first guess and putting shunt malfunction lower down on the list. Perhaps I, too, am finally starting to heal.
This past year has been quite remarkable for our little Noodle. She has never in her life been given such a long opportunity to heal and just “be”. Life for her has always been about pain, illness, surgery and fighting. This past year has been about growth, happiness, laughter, firsts, and just being a little girl. I won’t lie; there have been some tough days and she has had to work very hard; but she has faced it all with such grace and spirit.
We have not seen her neurosurgeon in a year. It has not been an accident or an oversight. It’s not because I’m a bad mom or negligent in her care. It has been a conscious decision, maybe a bit on the superstitious side, maybe a bit irrational, but my decision nonetheless. We are, however, paying Dr. B. a visit in two weeks to check in and celebrate this one year shuntaversary. May he be delighted and amazed by the beautiful young lady he will see before him as she certainly has changed from the sick, lifeless girl he treated a year ago.
Today, I celebrate the life of my daughter. Today, I am filled with gratitude and amazement. Today, I thank her for choosing to fight so hard when I know it would’ve been easier to give up. Today, I thank all of those who believed in her even when things looked hopeless. Today, I pray for another year.