“The great thing in the world is not so much where we stand, as in what direction we are moving.” ~ Oliver Wendall Holmes
Happy New Year! As you may have noticed, I took a bit of a break. With the holidays, it seemed like a good time to take some down time and pay attention to all the little things around me. With the minis in less activities and therapies than usual and KSP off from work, we got to spend some time as a family and reconnecting. But today it felt like it was time to brush off the keyboard and come back. The New Year always feels like fresh air blowing through my lungs. A chance to look to at old hurts with new eyes and aspirations with new opportunity. Last year, I wrote a post that summed up our 2011 in music (” A Look Back and Forward at ‘Mynewfavoriteyear’ through music”) and this year, I wanted to do the same.
This year has been packed with the highest highs and probably my personal lowest low. Through all of it music has been the soundtrack that pushed me to smile when I was a bit low, to cry when I desperately needed to breakdown and to laugh as I watched our little Q blow us away with his own passionate love of pop music.
This is where we started. Smiles all around. 2012 came with a host of changes in our lives. KSP took a new job, the minis were preparing to go to the UCLA Early Intervention Program, I started my own consulting company to have more flexibility and life was full of possibility.
If I have learned anything in the past 4 years, is that life is most certainly not something we can control, but that each up and down is it’s own form of milestone. The future is full of the unknown and unexpected, but it it is also brings the promise of growth, of learning, or renewed opportunity. It’s all about:
“The Climb” by Miley Cyrus
As the year progressed, I thought a lot about what more I needed to do for E and Q so as to never regret not having done enough. I was constantly carrying a burden of guilt like a boulder that had been attached to me so long, I barely noticed it anymore. While quitting the corporate world and starting my own consulting company, helped, it still didn’t feel like enough. Perhaps, it was the unknown of E’s condition. While my puppy dogs and rainbows vision of everything being fine by the time she was 5 if we just did enough still served as my guiding light, unbeknownst to us, we were being guided down a new path.
In March, my dad, Poppy came to stay with us for a month. The day in and day out support and the opportunity for him to spend time with Q and E in a new way, was great fun for us all. While he was here, we took the first step in what will now be a life long journey for us. Entering the UCLA Early Intervention program was a huge turning point for us. Not only from a developmental aspect but also from a support aspect. Meeting and spending time with other parents with special minis gave me great comfort. I felt “understood.” It was here as well, that E and Q would flourish in their abilities. With great pride I would watch 3 days week as Q’s empathy and attentiveness to E would grow and under his watchful eye and with the help of the teachers, E would break out of her shell and spread her wings. It was also here, that I would embrace that my little Q also needed his time. I realized there it was “Time to Begin” his journey as little Q not just as E’s brother.
“It’s Time to Begin” – Imagine Dragons
As in the last 3 years, the love and support we have felt came out strong when we were honored to be the Ambassador Family for the 2012 Annual March of Dimes walk in LA on April 28th. Over 17,000 people gathered in downtown LA to recognize and drive awareness and funding for research to ensure that every baby gets a healthy start and for those of us that have experienced the very challenging experience of very prematurity, the silent comfort of knowing you’re not alone. With our “Pruitt Wondertwins” team we walked 3 miles and had an amazing morning that may ultimately mean just one fewer baby will be born before it’s ready.
Lest you think are lives are all minis all the time, in May I got together with my sister D in Scottsdale, AZ where we go to catch up over cocktails in a pool and cheezy dance clubs by night.
Then in July, we all headed on our first plane trip to visit Gigi (my mom) and Poppy up in Oregon, and oh yes, my 20 year reunion! The Great 8 assembled in our hometown (missing just one) and had the best time catching up with one another and everyone else. To say I felt 22 again would be an understatement…I will love my girls forever and all the people I went to highschool with will forever hold a place in my heart…perhaps pretending to be 22 at 38 is even more fun than actually being “22.”
“22” by Taylor Swift
As the summer came to a close, and I traded in my 22 year old self for my 38 year old self (mostly, save a trip to Miami at the end of July for work), and got down to business of preparing for E’s transition into the school system in October and Q’s transition to a “typical” pre-school. Files, reports and meetings took over my life, but the biggest report was a genetics test that we had finally scheduled at the recommendation of the UCLA program.
As we waited for fall and Q went off it his first day of pre-school, our elation at Q’s new adventure of exploring his creativity and making new friends blended seamlessly with the building undercurrent of fear as we waited for the days to pass to get to September 14, E’s Genetics appointment. As our lives hurtled toward their third birthday, one conversation with a parent over coffee changed the course of our lives forever. Her son was in our class, and he had Angelman Syndrome. For a month this mom dropped hints at the similarities she saw between her son and E. On that hot early fall September day in Coffee Bean, I asked her if she thought E had AS. Her response, “I think it’s possible.”
And so, on September 14th, brimming with faux courage and strength, we answered the questions we had answered a thousand times and we watched as they combed over her tiny body dictating comments like, too low of hairline, extra hair on her body, too small toenails, and the list goes on. And then the words, “she doesn’t present with classic Angelman’s, but we will do the test if you want.” Our answer, “we do.”
13 days later on September, the world came crashing down over me like a tsunami as I sat at conference table in a meeting. The test was positive for Angelman Syndrome. A full deletion of the maternal strand of Chromosome 15, E was indeed “An Angel Among Us.” In the days that followed nothing changed for her, it was my own acceptance that had to be found. Q was my guiding light. He saw her no differently than the day before, she had no label, no prognosis, she was simply E. As the waves of love poured in, I found myself aching to feel the same as I had before, but I couldn’t make it happen, I needed time, and unlike all the other times in the past 4 years where I have tried to process on my own, I needed love and support.The love and support was an anchor keeping me tethered to hope and promise, it was all of you who heard my whisper,
Don’t Let Me Go – The Summerset
And lift me up you all did. For GP and MU, I will be eternally grateful to you as well for rescuing me on that fateful day. Thank you.
2 weeks and a soul searching trip to the beach later, I was ready to come back. Ready to not cry at each meal and watch as Q tried to process why mama was acting different. Ready to move forward. Ready to fight. Ready to resume my position to give E every opportunity to have the fullest life she is capable and ready to continue to learn from her fight, will, and determination to not let a white paper dictate her future, for she is a case study in the making, but whatever she is, just like Q, you, my sweet baby angel, are perfect,
“Just the way you are” – Bruno Mars
And like everytime life throws us a change, good or more importantly a difficult one, we have a choice as to how we approach it. How we reframe it, refocus the lens and make it work. For me, I had to get up off my mental fetal position, fill my air with lungs and
“Stand” by Rascal Flatts
Over the last 2 months, we have had many changes. New therapies, revised focus on what’s needed for both E and Q, rethinking our collective future as a family and for me personally. For Q, his continued growth and passion for music and learning has me in awe. His quick ability to laugh and entertain us all with a song, brings bursts of sunshine in our home.
This year Christmas brought an extra layer of joy as he learned about Santa and began to participate in our longest Anderson family traditions. With a visit from Gigi, we made and decorated Christmas cookies which had Gigi, E and Q in fits of giggles and laughter that warm the heart and soul.
And of course with his love of music, he selected his favorite Christmas song to be none other than “All I Want for Christmas is You,” by Mariah Carey. We heard this song no less than 500 hundred times, but it only took 2 rounds of listening before he was belting out the words (and the instrumentals when he felt it appropriate).
So, as 2012 turned to 2013, I knew that more change awaits. Ones we know, ones we don’t, but with the change comes opportunity, possibility, and the notion that
“Anything can Happen” – Ellie Goulding
And, while there may be some tears, there will be more smiles, laughs, giggles, and special moments to capture and hold dear to our hearts. It’s these moments I will look for and remind myself to be present for this year. To put down the computer, phone, ipad, and just be. With my minis, KSP, family, friends, and myself. I wish you all the same, more good that bad, happy than sad and for the times when it all feels like it might be too much, the ability to stop and try to find the nugget to make that day, ‘anewfavoriteday.’
Thank you for coming on this journey with me. For continuing to support and love our family, and me. Happy 2013 everyone, let’s make it ‘anewfavoriteyear.’