It’s hard to imagine that you can instantly fall in love with someone who has just entered into your life, but none the less, you do. I cannot explain how much love I have for my dear little girl. There are not enough words to tell how much I love her.
The other night I received a text message from my friend Emily. Emily’s daughter is living with Cystic Fibrosis also. We became friends after her daughters diagnosis and have really relied on each other in times of frustration, tears, good times, and bad. She has become one of my closest friends and is one that truly understands what I feel. Her text simply said: “I am having a I hate CF night”. Of course we have these days and nights everyday, but some are worse then others.
So I asked Emily what was going on, what was up? She proceeded to tell me that it seemed like everything she read was showing her how much CF worsens once a person hits their 20’s. As always, I think about the good, the progression of all the treatments and medicines. The things we do to prevent progression of the disease, and of course, how close we are to having a cure. I totally believe each and every one of these things. Each year the life expectancy climbs just a little. There is hope for us. Hope for my dear daughter. Hope for Emily’s daughter.
We finished our texting conversation, I said a little prayer for R. like I do each night before I fall asleep, and I closed my eyes to go to bed. It wasn’t until the next night that things really hit.
Instead of thinking about the bad things though, I started to think about how I need to savor each day with my little girl. I need to play with her, watch her giggle, tickle her, hug her, kiss her, LOVE her. I thought about how I need to show her I love her. I know she knows, but I need to show it. And not though I don’t show it, but I need to show it more.
This winter has been tough….We have tried to keep R. inside/away from public places as much as possible. We take her out in our yard, or sledding when it is warm enough, but we do not take her into any public place…restaurants, shopping centers, any place where there will be masses of people. We have tried our best to keep her from getting sick with the flu, H1N1 flu, RSV. So far we have succeeded. But with this comes the feeling of being trapped in our house, having nothing to do, feeling like our toys are not sufficient enough to keep us occupied.
And that all came into perspective the other night while I was thinking about how much I love my baby girl. We have spent this winter moping around, watching TV, going through the motions, but not really enjoying every minute we have.
I am ready for that to change. I am ready to enjoy every minute with my daughter. I am ready to sit on the floor and play with her, do puzzles, wrestle, brave the cold to go outside, read books, laugh, giggle, snort, and most of all LOVE. I love her and I always will. ALWAYS. I am not willing to let another day go by where she grows up too fast and not realizing how lucky I am.
I have a wonderful daughter. I have the ability to keep her healthy by staying home each and every day with her. I get to really see her grow each day. I am not trapped in my house, in my living room, in this life. I have her! I am so very thankful!