I broke down twice last week in front of people I am still getting to know. The tears surprised me as I fumbled my words when explaining MD's situation. I was embarrassed but they were kind and sensitive in their response.
I am struggling to keep a balance for my chickadee.
Cystic Fibrosis is known as a lonely disease. A CFer has to be hyper vigilant when it comes to their health, which means missing out on social occasions. A common cold is anything but common for our family. A cold turns into an infection which turns into scarred lungs which turns into less time to live. How do you explain to someone that their child's cough could mean a shorter lifespan for your daughter? Brendon and I decided from the beginning that we would try to make life as normal as possible for MD. I struggle in finding the balance between protecting her and letting her be, just be. I feel such a fierce charge to keep her healthy, a calling that started before this time on earth, a calling that was agreed upon because of Mary Deane's trust in me. It's sacred. And it turns me to Him to guide me.
This week, for the very first time ever, MD had friends over to play. I wish I could have captured it with photos. During the middle of it, she ran over and excitedly announced, "Mommy, I'm talking and playing with the kids!". She loved it. A day later I overheard her quietly telling Clark (while they played with the same toys as the play date): "Clark, did you know my friends came and played with me?". Break. My. Heart. And there went the tears again.
"I was wondering if you were a real person having made this huge move without any sort of difficulties!" Those were the words my sister, Katy wrote me this week after I explained I was going through a tough time. The funny thing is, anything that has been hard because of our move here pales in comparison to what we've been through with MD's CF. Seriously, CF makes all my other trials look trivial. What a blessing to see life through CF-colored glasses. I just hope MD can have as many moments as possible with her disease as the farthest thing from her mind.
12 comments:
And your optic through CF-colored glasses allows me to catch a glimpse of it, too - a much needed reality check to blessings I have not expressed gratitude for. I think you're so brave for so many reasons - to share your thoughts, to fight CF... God bless you and your little MD.
I really struggle with this too - I hate feeling like my life is limited by my need to not be exposed to too many germs... but the bottom line is, it IS!
We actually have a sign on our door (a cute one, I might add) gently requesting that people not come in if they are sick. We've had problems in the past with home teachers, etc., coming over with "just a little cold." I think the biggest issue is at my husband's workplace though - people come in sick all the time and, after 8 hours of sitting next to them, my husband usually catches their cold. No biggie for him, but when he brings it home and I get it... I usually end up in the hospital.
Oh Ann, such beautiful heartfelt thoughts. I will never fully understand the hold that CF has on your family, I can only empathize (with my gramma heart) and pray continually for you. We love you. Tina, mom, gramma
You are an inspiration to me. Thinking of you.
Ann, tears here. You are so brave to face this world of germs with Mary Deane at your side! You lead that charge with such courage and frankness. Love you.
Ann,
ever since I've known you. I've thought you were the sweetest, most beautiful and strong person and that has grown ten fold as I've read your journey with Mary Deane and CF. You amaze me. Thank you for being so honest and inspiring me with your strength and faith. I think about you often. I freak out with sickness and sick kids getting around mine. And that's mostly because I'm selfish. Mary Deane is so lucky to have such an amazing person for her mother.
I am so thankful that Mary Deane was given to you and Brendon. You two were truly foreordained as her protectors, caregivers, nurturers, and teachers. I pray for you daily.
OH Ann. How sweet. My boys rarely have play dates but when they do they are beyond excited so I can only imagine how your heart must have swelled when MD had her first. Here's to many more!
As always Ann-- you're a total inspiration! Thanks for sharing your wisdom.
what wonderful words.
yours, and hers about her play date!
Until someone REALLY knows a person with CF they just don't get it. And even then they don't understand that CF like any other disease has a spectrum and it just isn't as cut and dry. The circumstances around one CFer isn't necessarily the same for another.
I'm sure it was stressful for you to give up a little bit of that control and invite people over, but it sounds like it was just what MD needed.
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