Friday, February 24, 2017

On our Sixth Anniversary

So many things to think about right now.  First and foremost, Tera’s sixth birthday is on Sunday.  That means so many things to me.  It’s the sixth anniversary of us being parents, the sixth anniversary of our lives changing forever, the sixth anniversary of the news that rocked our lives, and most importantly, the sixth anniversary of one of the most defining events of my life.

Every year so far, Tom and I have decided what to do for Tera’s birthday party. But this year, she made all the big decisions.  She wanted a Batgirl birthday party, a chocolate Batgirl birthday cake (not cupcakes), and she wanted it to be purple and black.  This is just one of the ways that she is showing us how much she has grown in the past year.  She has made amazing growth in kindergarten, is working on many of her behavior issues, and continues to demonstrate capability in her ever increasing independence.  

But despite all the gains, there are still areas that she struggles in.  In the past year we’ve had to admit defeat (in a manner of speaking) when it comes to certain gatherings.  Events with lots of kids (like birthday parties) have proven to be very difficult for her so we’ve had to make the tough call and decline some of them; even in the cases of close friends and family.  She still has meltdowns, but they are less frequent.  And the biggest challenge, for anyone and everyone that works with her, is her ever changing and incredibly difficult to identify sensory needs.  We all know she has them, we all know SOME of her triggers, but no one can quite get a handle on what works best and when.  

Tonight was a perfect example.  Tera’s cousins and grandparents came for dinner and a visit.  It being the end of a school day (and one in which she woke up at 4:45am) meant it wasn’t the most seamless visit, but overall they did fine. However, when it was past her bedtime and everyone had to go, it was all too much and she had a meltdown.  And so as everyone left and I physically restrained Tera as she kicked, screamed, cried, flailed, threw her head back, and generally melted down, we were reminded once again of her struggles.

I finally got her upstairs, changed, and into bed where I just stroked her cheek, brushed her hair from her face, and let her snuggle my arm.  But as I laid there waiting for her to fall asleep, I watched that perfect face, knowing what she had just experienced, with my hand on her swooshing heart and I remembered.  I remembered the first time she was placed in my arms and I showed her to Tom amazed at what we had created.  I remembered the short lived euphoria as an hour later we were delivered the news of her diagnosis.  I felt the swooshing of her heart and remembered once again that yearly cardiologist appointments are still a part of our lives as we wait to learn whether or not she’ll require surgery to close the remaining hole.  I remembered so much of that first day, the anniversary of which we celebrate on Sunday.  And as incredibly lucky as I feel that that heart surgery is a still a possibility not a probability and that it hasn’t been necessary yet, I still think to myself, “why her?” “why us?” And the answer is, because.  

Everyone who knows us know we don’t believe in the “everything happens for a reason”, “it’ll get better”, “you’re only given what you can handle”, and any other platitude that  people use when they want to feel better or make someone else feel better.  If it works for you, great.  In our case, feel free to say, “that’s rough,but my goodness are they beautiful and amazing”.  I’ll tend to agree with you more on that.  

I’m not sure if I’ll get another post in on Sunday, but for tonight I’ll say this.  We’re damn lucky to have these two amazing, beautiful, smart, sassy, feisty, inspiring, funny, strong girls of ours.  They are challenging, exhausting, loving, and worth every second stress that comes along with parenting and loving them.  They have taught me about patience, priorities, life, and love and for that I will forever be grateful to all the trials and tribulations that came after 2/26/11 and 7/14/14.  Happy birthday to my sweet snuggle bug, mommy loves you more than will ever know.  



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