Friday, September 20, 2013

Bride with Cf

Being a bride and being a bride with cf. 

I can't help but find moments where my mind wonders. This is the most important day in my life. But how much of having cf changed what this day is about. 

I wouldn't be concerned about the dress in the aspect of it being heavy or bulky. Without Cf I would of picked something beaded and heavy  with crystals. Bling is better

I would probably wouldn't of picked a small venue. Because if I didn't have cf I would of gone to college and had a job that I made lots of friends. I wouldn't have a small bridal group cause id have more friends who took interest in me and enjoyed my humor and kindness and not get distracted with the responsibilities of being healthy as my only priority. 

I wouldn't have to pack a breathing machine and cough suppressant. Instead of praying for good weather I pray for strength to get through the day without making me sick or causing an infection that could turn into worse.

The people I wanted to attend aren't out of town or working they are in heaven when they should be my special guests. Stephanie would be
My 4th girl standing by me. And Megan would have flown to see me walk down the isle and we would dance until we couldn't dance. My sweet Maggie would be there too to make it complete all my cysters together on my special day. 

This day is a day I have dreamed of but I never realized how much it has had to change just to accommodate my cf. So Matthew and I will become one and cf is our baggage that we will carry together. Both our burden

Sunday, September 1, 2013

Happy Birthday Maggie


Dear Maggie,

Its been a long time since we have talked, but don’t think that I have forgotten you…how can I forget my first angel.
            9 years you have been in heaven. How could it be so long? How is It possible to continue 9 years with out you here?  Today is your birthday you would have been 25. Wow the big 25. I think about the last time I saw you…it was your sweet 16 and you were beautiful and so happy to have everyone honor you and celebrate such a special day with you. That was before cross contamination was an issue for us CFer’s and i regret not giving you a huge hug and telling you how much I looked up to you, and how I looked to you for strength. I guess some thing never change because I still look for you for strength for comfort and even for guidance.  Every year I see your Grandpa talk about you and how much he misses you and every year it breaks my heart, the love your family has is amazing but its their strength that’s admirable.

Sometimes I cry for you. I cry for Megan and Stephanie too. I wish you all were here with me and that I could experience life with you. You were deprived of adulthood and how is that fair? I’m older then all of you, it should have been me who missed out on these things. In life that’s the order and that’s the way the world works and when we go against how nature is supposed to work…it is wrong. Parents aren’t supposed to bury their daughters and Grandparents aren’t supposed to watch their grandchildren die that goes against nature. Look at the damage death does to those who are taken to early; their families are hurt and left un-whole for to long until everyone meets again. Its wrong.

No one ever really dies as long as they took the time to leave us with fond memories.  ~Chris Sorensen


So happy birthday Maggie,
 Hugs
 Jessica

 

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