Friday, February 11, 2011

Share the Love for Quinn: New Normal

This morning, I heard Sela talking in her crib as Ryan got ready to head to work. I slowly got out of bed and headed to Sela's room to talk to her. She was eager to get "up" and "out" (Sela's orders) of her room and we walked together to the kitchen where I turned the coffee pot on. The sounds of brewing began and Quinn's face appeared around the corner as he walked into the kitchen. "Hi Mom." Sela was ecstatic to see Quinn. Hugs were given. Hair was ruffled. Discussions were had about taking a bath. Quinn tried to negotiate "a rinse" but Mom held firm to full bath, hair wash included. And Sela wanted her milk and "Da-da". This is normal.

I think about getting Quinn's medication and what time we need to get breathing treatments and CPT started. I think about what each person needs to eat this morning--what will pack a caloric punch for Quinn, be yummy and nutritious for Sela, and that I will remember to eat something besides drinking my coffee. Is Quinn feeling OK. Any signs of cold or sniffles or coughing. Any medications to refill? Am I making sure that Sela gets the attention she needs?

This is our normal too.

Sometimes this journey feels isolating. Like driving with everyone else on the highway but always taking a detour.

Our normal continues to evolve. Things that felt so odd and uncomfortable originally now are a part of our daily routine. We are making a conscious effort to be consistent with Quinn's care without letting it be the focus of his life or our parenting. I'm a task person and completing the tasks surrounding Quinn's care have dominated my thoughts at times. I'm learning that I can help him complete those tasks and still create space for playing, having a fun adventure, and experiencing the rest of life.

There are things that I am thankful for. When Quinn turned one I was able to think back on all the things and people I was thankful for in this post. There are new things that I am able to add to that list today:

Quinn's health--things are not perfect but he is doing SO WELL! I am thankful for his energy, life, curiosity, hugs, and all round "Quinn-ness".

Sela's health--when we had peace about having a second child, it wasn't without questions. Because CF is a genetic disease, there was a one in four possibility that Sela would have CF too. She does not have CF, praise the Lord! There is a 50% possibility that she is a carrier of the CF gene and a 25% possibility that she is not a carrier at all. She will never develop CF.

Our family--there are four of us doing life together and I am so grateful for Ryan and our two kids. Seriously.

The rest of our family--our kids have awesome grandparents, aunts, uncles, and cousins. What a gift to have amazing family!

Our friends--from our small group and beyond. Sharing the journey is so crucial. Speaking truth and love to one another. Laughing. Praying. Talking. Crying. Talking some more. Eating. So good.

People listening and reading--thank you for reading about Cystic Fibrosis and Quinn's journey. The comments and notes and donations to Team Win with Quinn have been awesome!

We will continue to raise money for Cystic Fibrosis research and in May we will walk in the Great Strides Walk. Team Win with Quinn will gather together in Salem to walk in support of those with CF and research for CF. It will be a good day to walk and remember that we are doing something to help Quinn and others with Cystic Fibrosis!

My blog will continue...a chance to write, talk about family, share about Quinn, things I love like organizing, reading, and living. The grand and the mundane. My word for 2011 is life-giving. How I spend my time, my thoughts, opportunities we say yes or no to, and experiences for Quinn and Sela. That we walk in confidence and hope and not fear. To choose what is life-giving.

And Quinn...thanks for sharing the love for Quinn.


Mandee said...


Thank you so much for sharing - for your honesty and openness. It has been such a gift to read these posts.

-Mandee Wilmot

Leslie said...

I love the way you have shared your experience....and I can relate to a lot of it! I appreciate your balance of honesty, hope, and sharing the 'everyday-ness' of your life experience. I am glad Kim told me about your blog!
~Leslie Brittell