That time we said yes and God said epilepsy.


 I haven't written much about Lucie's epilepsy diagnosis here, partially because it somewhat feels like an unfinished story.  She has a diagnosis now and her initial treatment plan is working well.  That means we are finished with diagnosis, right?  Medically, yes, but there is another story intricately tied to hers that is still waiting to be written.

A story that is equally tied to both her story and to Tomas'.

You may see where this is going, but indulge me while I drag it out a little bit longer here.  I have a suppressed flair for the dramatic.   See, we are Catholic.  You are probably saying, Yeah Heidi, we get that.  We don't get it, but we've heard it all before now please stop talking about it so we can pretend we don't know that.

See as a Catholic blogger I have basically no Catholic following outside of a couple of friends who happen to also be Catholic.  I joked once at a conference that I think I'm on some Catholic blogger blacklist and was promptly unfollowed by 5 unnamed souls (true story).  I feel better about myself when I pretend it wasn't related.  I'm well aware that the vast majority of my readers do not share my Catholic world view and I'm totally ok with that.  In fact, I love you all the more for it.  I have no idea why you stick with me, but I'm glad you do.  I have grand aspirations of showing you that Catholics aren't really that crazy, but my realistic side says probably there are just a few more people in the world that actually believe the notion that we don't have to be in perfect agreement to stay friends and to learn from each other.  Hopefully that perspective isn't overly me more hope for our crazy world that way.

I digress.

I can explain our pro-life and pro-family beliefs using an entirely non religious argument.  I won't do it here, but if you know me in person I'd be happy to respectfully chat about it someday.  Granted, for me, its all a better discussion with the faith component, but I acknowledge that's not for everyone.  I'd rather spend all day with 100 secular prolife persons of ANY background than 1 jerk who agrees with everything I believe but isn't nice about it.  I believe firmly in baby steps in the right direction.  I'm not here to persuade anyone with my words, but with the way that we live our lives- both our choices and how we treat people.  Sometimes I do an ok job, other days I don't.   I'm humanly flawed that way.

I go to confession a lot.

Digressing again... Tomas, Lucie, and the rest of the story.

Due to Tomas' rough start in life and continued struggles, he wasn't able to breastfeed as long as I normally do.  Without breastfeeding my fertility returned quite early.  We had already started hearing from well meaning friends, even well meaning Catholic friends, that clearly we had every valid reason to avoid pregnancy and be done if we wanted to be.  To be fair to them, I did nothing to dissuade such conversation.  Initially Tim and I talk about it and decided that we would give it until Tomas' birthday feeling like that much was for sure more than we could handle and then we would readdress.  With NFP, truthfully we readdress every month but we were in agreement that we would be diligent in charting and avoiding for that long.


Shortly before Tomas' first birthday, St. Gianna Molla's daughter came to our beloved Shrine.  St. Gianna was a huge intercessor for us when I was pregnant with Siena and I always kind of regretted not giving her a place of honor in Siena's list of name saints.  Tim took a personal day off work and we planned a special trip with our whole family, even meeting Siena's godmother there.  As we prepared for that day, the powerful witness of this heroic wife and mother really began to tug at my heart.  It was almost Tomas' birthday and I felt like while FPIES was hard, it was not avoid-having-another-baby-at-all-costs hard.   He would (will) probably outgrow it for the most part in the next couple years and I'm not getting any younger.  I didn't want regrets.

I brought my thoughts to Tim and he asked for a couple days to pray about it himself.  After a few days we talked again and he said he didn't feel that we should actively try to conceive just yet but that we could go back to a more spontaneous approach and let God decide what happened from there.  In truth, you can't unlearn NFP but even knowing where I was in my cycle life happened and we were in the range of possibility but not in the "ideal zone" so to speak.  (By the way just to clear up another common Catholic misconception we are not at all prudish about sex....seriously I talk about stuff like this way more now than I ever did before.)

So we said, Yes, whenever you are ready, Lord, we are ready.

We took our trip to the Shrine.  It was wonderful and beautiful and the same night Lucie had her first seizure.


Looking back, you can almost see it coming in the picture I think.

We were told it was probably an isolated event and not to worry too much about it happening again, but she kept not bouncing back and not bouncing back.  On the way home from a doctor's appointment two weeks later she started talking about her sister.  Kylee?  No.  Kenna?  No.  Siena?  No.   The other sister, she kept insisting.  The baby named Gianna, she insisted.

Then she had her second seizure, and her third, and her fourth and she was admitted to the hospital and started on meds and we underwent testing, and in the middle of it all, yes.  I was pregnant.

I am pregnant.

18 weeks almost now.  I have an ultrasound in two weeks and we will see if Lucie was right about another sister.  I selfishly hope that she was for a number of reasons (not the least of which being that it makes a cool story).  But I know my reasons won't matter a bit to me if we are having another boy.  I am excited about this even though that seems crazy to me.

Not every special needs family makes the choice to continue having children after facing the level of needs that we have faced this year.  I respect that and I completely understand.  On hard days every negative comment I've ever heard comes rushing back in a stream of self-doubt.  None of the demands on my person are going away.  This is going to be hard.  I'm probably going to need help and I'm trusting God will provide that when the time arises.  Tim just started a new job and is going to be doing quite a bit of traveling, possibly right up until I deliver.  Yet at the same time his new job is also going to provide much better for all of the medical needs that we have.

Life is give and take that way.

When I am awake and blogging at 3 AM because Tomas has had a rough week and is choking and throwing up in his sleep almost nightly, I definitely wonder what God was thinking.  Maybe if I didn't act like such a know-it-all, He'd stop trying to show me how much more He knows.  Probably not.  I struggled mightily with when and how to make this public knowledge.  I have a couple friends who just didn't tell anyone online until after the fact...I admit this was tempting.

Tempting, but not who I am.

The truth is, as much as this is going to be hard....and I am under no romanticized delusion that it won't be...this baby is the most beautiful testimony to natural family planning and God's design for marriage and family life of all of my children.  Yes, even more than Siena.  She was my testimony to the dignity of every human life, but her conception and circumstances were perfectly normal and acceptable.  She was easy to say yes to initially.  No one rejected her or refused to acknowledge her existence before her diagnosis, prognosis, or death.

Even if, after Tomas, we were open to more children eventually but using artificial birth control I never would have gone off of it before Tomas' birthday.  It's not something you can turn off and on like that.  One more week and I would have hesitated with Lucie sick.  One more month and and an epilepsy diagnosis and I would have said absolutely not.  That one week window when St. Gianna's daughter came to the Shrine was it.  The only opportunity this tiny soul had at life.  Our participation in that was far more than just a one-night stand, or an oops, or anything else.   Natural family planning worked exactly how it was designed.  Prayer, conversation, husband, wife, God.  The wisdom in it all is mind blowing.  Planned?  You could argue it either way.


No matter what.

Now, if only I had enough hours in my day to share this story with all of the people who's hearts have been hardened to the blessings of these precious children under whatever circumstances they arrive.

"As to the past, let us entrust it to God's mercy, the future to divine providence...... Our task is to live holy the present moment."    St. Gianna Molla


Marisa said...

I did NOT see where that was going. I sort of amuse myself at how well I don't see a climax coming until it bops me on the head.

Congratulations! A girl would make for an amazing story. And if anyone knows just how to take it day by day, it's you. This baby will be just as lucky as your others to have such an amazing mama and advocate on their side.

Angie said...

Gah! If I hadn't read to the end I would have missed the best part! Yes. Yes. 1000 times yes. "Maybe if I didn't act like such a know it all...' YES!
Congratulations Heidi! I am so glad you continue to share your Catholic (and very universal I might add) story! It is uplifting to me in my faith journey and to our marriage and family as we seek the same ultimate goal. God is so good!