Continuous Grief of Chronic Disease

Lovely! Inside and out!

I am again surprised by LPLD.  Every one in a while, it just seems to sneak up and hit me hard!  I continue to find more ways that it impacts me emotionally.  Even just as the mom of lovely girls with LPLD, not as someone with LPLD myself!

She's 2!!

I was talking with a young man over a year ago who was wanting to be tested for a genetic disease.  His wife came from a heritage that was known to be more likely to carry this particular genetic disease, and he was sure that if there was any chance whatsoever of their offspring having that disease, then he would just never have children.  Having two girls with a genetic disease, especially having knowingly pursued pregnancy even after my eldest was diagnosed, his statement hit me hard.  Harder than I would have expected.  This young man didn't know anything about my family, and so wasn't trying to be hurtful, but man did it hurt.  I was shocked at the strength of my emotion and had to get away from him to shed a few tears and recover my equilibrium.  It wasn't my job to convince him that life is worth living, even with a genetic disease.  That there are far worse things out there.  That having my children has made me a better person, far more than anything else ever has, crazy low fat diet and insane worries about stomach pains notwithstanding.  That it's worth it to have a baby even if you know your baby won't be perfect.  Because, after all, NO baby, no person, is perfect anyway.  And to think we are in control of our lives, our children's' lives, or really anything at all, is just silly.  I could get involved in a terrible car accident this afternoon and never move my arms or legs ever again.  Or I could lose my capacity to think clearly and do my job.  In the face of psychiatric illness, not even my thoughts and perceptions of reality are really under my control.  My thoughts got pretty existential pretty fast, all from a newlywed sharing his thoughts on having children.

Note the 'I love you' sign.  Sigh :)

More recently, I happened to visit with a beautiful young girl, just my daughter's age.  Now, Monica is perfect in every way to me, but talking with this other 7 year old, I reflected on how LPLD may have made her a little shorter, a little more scrawny, than she might be otherwise.  And again, unexpectedly, my heart just broke.  This is what my lovely girl should look like, and it's not fair that she doesn't.  It's not fair that she can eat an entire (cheeseless) pizza and still be hungry.  It's not fair that we walk into an unexpected celebration and she sees the beautiful spread of sugar cookies, and she pulls me aside and asks that no one in our family eat a cookie, since she can't.  It's not fair that she has to eat more snacks and bigger meals, since a whole healthy food group is shut out to her, and some days it's so hard to think of something interesting to eat that won't make her sick!

7 years old!

Finally, Monica's 7th birthday was just over a week ago.  We were visiting my parents that week, and we called literally every bakery in their city.  No one was willing or able to make a fat free cake for us, and Monica had requested a cake that looked like the cakes other kids had for their birthdays - frosting that is smooth and perfect, edged in a way that I just can't seem to pull off, with a screen print on top that I certainly don't have the supplies to do.  She wanted a store bought cake rather than home made.  Preferably with a print of Frozen on top, iced in blue.  We called and called.  We visited store after store.  Who knows what the employees were thinking, I'm sure some were rolling their eyes at the idea of someone who wants to eat cake and not gain weight, 'have their cake and eat it too, ' as it were.  I'm sure they weren't stretching their imaginations to figure out a way to help a little girl have a birthday cake like everyone else.  The happy ending is that we finally found a small bakery who pulled it off.  The result was both fabulous and heart breaking for me: perfect sugary smooth frosting (without any of that rich buttery satisfaction of flavor)!  Two layers of chocolate cake that was light and fluffy (and honestly rather bland and dry)!  A chocolate creamy layer between (of fat free pudding, pretty blah if you compare it with a mousse)!  And of course an image of Elsa and Anna printed on top (perfection!!)!!  It was a wild success, and even the other kids ate pieces, but I had to stand in the kitchen crying for a little bit.  

It. Was. Perfect.

This is not what I want for my little girls.  I want to make them buttery and rich cakes at home, or roll my eyes and buy them the stupid store bought ice cream cake covered with crisco-y icing.  There is a certain fakey sugariness about so much of the treats Monica has to enjoy, missing the richness that I wish could be there instead.  It's hard that I can't give her everything.  But it's also a reminder that the empty fakey sugariness is the truth of our worldly desires - I'm not a perfect mom, I can't love her in a perfect way, I can't be everything she needs.  Monica needs to encounter the emptiness of life and seek Someone who really can fill her every desire.  This life is imperfect and empty for everyone, no matter what images are on their Facebook page, how joyful and healthy they seem in a chance encounter, or how Pinterest perfect their birthday party.  LPLD isn't the real problem here, this is life.  What I really want for my little girls is Heaven.