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?!
Oh Andrea, I have the same bumps in the road and like you said it's just a bump but why does it feel so hard sometimes. Thank God we have our constant reminders in our adorable kids to tell us and teach us that everything is going to be ok...better than ok....wonderful and beautiful with bumps in the road. HUGS!!!! She's thriving...seriously she glows!
ReplyDeleteI don't see DS either. I see a beautiful, happy little girl!
ReplyDeleteYou have grown so much since we first "met". Just remember...you have more days where you don't see the ds, than you do see it. We have to have those meetings, for now. They are not forever. They are for these 1st few years to make sure our little people are given every chance they are entitled to. That's it. Tomorrow, back to your busy life. The meetings are just a way to keep us on track. I often wish I had meetings for our typical kids...to reassure me that I am keeping them on track! Wouldn't that be nice?! Find the bright side of it and go with it! I personally will be sad the last time we have our IFSP meeting. Nobody watching over Jake to make sure mom is doing her job to get him to where he needs to be! To me, that is gut wrenching! I'M PROUD OF YOU!!
ReplyDeleteAndrea, i have those moments too, but they seem fewer and farther apart now... somewhat fleeting. Mostly, 99% of the time, I absolutely love that extra 21st chromosome. It is part of Mylie, it shapes who she is and I love her, so I love the extra 21st chromosome too! I just think if Mylie did not have the extra chromosome then she wouldn't be the Mylie I know, she would be different. Our family would be different, our perspective would be different, our lives would essentially not be what it is today. And I love where we are, who we are. I wouldn't have it any other way!
ReplyDeleteI don't know why that 1% of the time I feel saddened. I don;t know what triggers it. All I know is that it doesn't come as often as it used to. And one day, I believe it won't be there at all!
Life is too good!
love to you all!