The other day I was sitting with a good friend of mine chatting while sipping coffee (hers was decaf- she is trying for baby number 2). We have been friends for years and we used to be so similar, we were always in the same stages of life. We went to college together and spent countless hours studying side by side, got married less than a year apart and shared and planned every little wedding detail together, had our babies 3 months apart and took yoga together, went to the same midwife, and eventually breastfed, burped, and soothed our babies in each other's homes. But somewhere along the line my life stalled out and hers continued forward, I got left behind. I are no longer on the same page. I am not sure I belong in the same book anymore.
You see, when we get together she chats about what most 30-something year olds chat about, things I should easily relate to. She talked about how excited she was that they are trying for baby number two. How she wants a large family- 3 or 4 total. She want a house full of kids!
I kept thinking how I will never be healthy enough to have another baby. My husband and I don't have the luxury to discuss how many kids we want because CF took that choice from us.
She was chatting about how she found the perfect school to send her son to. One that does amazing enrichment programs and has a great student teacher ratio.
I kept wondering if I would live long enough to see Kaylee go to kindergarten. With my lung function so low and the fear of sickness lurking around every corner. I wonder how much longer i will be around to raise my precious little girl. Please, oh please, let me see her go to kindergarten. I want to at least live long enough for her to have memories of me.
She was talking about how her and hubby want to take a little vacation in the mountains, you know to get away from it all.
I was thinking about how my husband absolutely loves going to the mountains, but how I could barely breath in the high altitude when my lung function was in the 50s. I can't fathom the struggle with 30%. My husband's favorite vacation spot is a place we can't go anymore. Maybe after I die he can go with his new wife...
She was talking about how she was a crazy teenager and that as hard as raising a toddler is that raising a teenager will be 1000x harder.
I kept silently praying that I can know what Kaylee will look like as a teenager. I want to know if her hair stays curly, if her eyes shine just as bright. Will she be smart and studious, athletic, artist? What will her friends be like? What class will she hate? Which will she love? Oh. I don't care if she makes me drop her off at the end of the street because she is humiliated to be seen in the car with her mom, I just so desperately want to know if that dimple in her left cheek will still be there when turns 16.
I agree and nod and say all the things I am supposed to say. But I don't understand her world- your world. It is not the same that I live in. I do not speak of my horrid reality, it is one you do not wish to know. Nobody wishes to see the world I live in and so I live in it by myself. I think these thoughts, but they will never escape from my lips. Your world has you too preoccupied with the wonderful possibilities your youth gives you, of the vast and open life that lays ahead. My world is rapidly collapsing on me and I won't be so wretched as to invite you in. Nobody deserves to be here.
For now, I will pretend. Pretend to understand the excitement of being young and free. I will pretend to understand what it feels like to know your life has just started rather than wondering how rapidly it will end. I will pretend my life is like yours when in reality I know nothing of the life you live and in reality you know nothing of mine.
Thank you for this honest post. It was so hard, yet so good to read it. My eyes are brimming over. I have felt many of those same feelings you describe. I have sat through mothers chit chatting and complaining and being normal and not been able to shake that thought of "you have no idea." I pray all the time that I might be here to see my son through childhood and adolescence and into adulthood. I wish for a house full of children, but know I will have just the one. I am praying for you, that you can continue to feel hope and experience healing, that you will regain more health than you thought was possible, and enjoy many happy tomorrows with your family.
ReplyDeleteI hate that there are other people out there that share my feelings, but I feel comfort in knowing I am not alone. I so hope that they can find a way to ensure that mommies with CF can watch our babies have babies of their own!
DeletePeople pretend all the time - it's how we get thru our days. It wears me out. But allowing the truth to show is beautiful. I wish so much that your inner life wasn't so upsetting, so scary. The physical realities you face everyday are very tough. But opening up about how you feel inside is human and beautiful. It can be so hard, sometimes impossible, to talk to people in your 'real' life. I hope that writing down your story here gives you some comfort. Your honesty comforts me. I hope you have more time ahead with your daughter and husband than you ever imagined.
ReplyDeleteI feel lucky I have two people in my life (without CF) that seem to "get" it. I have to say though, I have trouble opening up about my CF to most people I know in real life. I find the easiest way to express myself is through this blog. I find it my therapy :) Thank you for always bringing me comfort or words of wisdom through your comments.
DeleteThis post absolutely breaks my heart. In different ways, I have so been in that place. I feel like I go through cycles - sometimes where I can feel more "normal" and forget that my life is so different (right now, thanks to these perma-antibiotics, is one of those), but then life smacks me back down and I'm left feeling so incredibly different and like I almost can't even relate to the lives my friends are leading. I'm sending so many prayers your way.
ReplyDeleteI absolutely cycle between feeling "normal" and fitting in with my peers to feeling so very different. I am glad you feel "normal" at the moment and hope you can continue to feel that way for a long time- it is a great way to feel.
DeleteThanks! I came off my antibiotic 2 days ago and of course this morning Kate woke up with a massive cold, so I have a feeling that my lucky streak might be coming to an end very soon. ;) But here's hoping!
DeleteOh no! Hopefully that your body is in a strong state and will be able to fight off or completely avoid her cold. It is so hard because those babies love sharing germs!!
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