Settling Into Our New Normal

September 23, 2015

Settling Into Our New Normal

Waverly has had a long month. She has endured a lot of doctor appointments, new medications and changes to her routine. Thankfully she is a resilient little girl who adapted more quickly than I.

In some positive news, her back brace is doing what is supposed to do. Whilst wearing it, the curves in her spine went from 50+ degrees to about 30 degrees. The orthopedist recommended that she wear it whenever she is awake. It has certainly added an extra long step to our morning routine, but I know the benefits outweigh the aggravation of strapping her into the brace each day.

She has also tolerated her new seizure med quite well. She was fairly sleepy that first week, but we have worked up to her full strength dose and she seems brighter. We can elicit smiles and an occasional giggle which thrills me. And (knock on wood), she hasn't had a seizure in about 2 weeks.

I feel as if life has slowed down more for our family. It's taking me much longer to prepare the kids for their day. Simple tasks are requiring more effort and time. I seem more aware of beauty in simple things - holding her hand, taking a walk around the neighborhood, glancing at her big brown eyes in the van.

I am embracing the slowness. Embracing the simplicity of life. Thankful for today.

Comments

Anonymous said…

Thanks for the update, Shannon. Enjoy this great fall weather! nm

September 23, 2015 at 9:35 PM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.