We had an IFSP(Individualized Family Service Plan) meeting yesterday. This meeting is held every 6 months with our case worker and therapists to discuss Kamryn's development and determine her service needs. She receives services (speech and occupational therapy) from the state because she was born with a genetic condition.
The night before our meeting I wrote this, but did not post it..
My days are full and busy. Taking care of our girls, school, work, homework, after school activities, laundry, dinner, playtime, snuggle time, all the small things that we do every day add up to a full day. Then there are extras that get squeezed into the already busy routine. Doctors appointments, getting sick-this one throws us way off, PT, ST, IFSP meetings... Did I just say IFSP meetings like it is no big deal? This attitude (or is it acceptance ) has slowly emerged within me. Kamryn has Down syndrome. Period. No big deal.
Anything we do related to her having Down syndrome has become normal to us. The other day at the grocery store a lady approached me and asked if Kamryn had Down syndrome (Kamryn was sitting in the cart). I paused, looked at Kamryn, and thought how could this lady tell? I don't see "it" anymore (however, things, situations and people reminded me "it" is there). The lady was very nice and just genuinely curious, which for me is welcoming. I realized during most of my everyday life, I forget Kamryn has Down syndrome. She has Down syndrome, and it's no big deal.
Tomorrow we have IFSP meeting. I don't feel sad. I don't feel overwhelmed. I just had to add the meeting into the already busy and full day. I actually feel confident and strong.
WE HAD OUR IFSP MEETING.
I don't feel so strong and confident after all. My heart feels heavy. I don't want it to. I wish it didn't. I try to ignore the ache, but it is there.
This is forever.
All I keep thinking is this is forever.
We can't fix it, it won't go away. Kamryn has Down syndrome and it is forever.
What happened to my feeling of "it's no big deal?" How did that vanish all of the sudden? I realize that in the journey of life you get off track, you hit bumps, it's a natural part of the journey. I just don't like the bumps. Who does?
Today, my heart feels heavy. It frustrates me because I am living the most amazing, wonderful, beautiful life. If I took all the joys, love, wonderful, beautiful, great things in my life and placed them on one side of a scale and placed the few challenging, difficult and hard things on the other-the great things are so abundant that the scale would tip over.
So, why does my heart feel heavy? Why? When these few challenging things don't weigh more than a feather, why do they feel so heavy?
My heart feels heavy. But I know it will pass. And I know that with each bump, comes more strength. And more life.
Life is beautiful, even when if feels heavy.
Even with a heavy heart, I still smile. How can I not?!