Looking Back, Vol. 5

The month between diagnosis and surgery was . . . something.

Doing fetal surgery was one of the hardest decision making processes we’ve ever gone through.  There are so many factors.  We initially wanted to jump right in with a yes, but then when we learned about all of the risks and logistics we were extremely unsure.  For a while I leaned yes or no on alternating days.

Could our family handle mom on bedrest?  Would we have enough help?  Would anything go wrong? Would it make a difference?

We asked God to make it clear.  We at times wished to be disqualified to take the weight of the decision off of us. We qualified, so we kept moving forward.

Could I wean Fulton?  Could I do that to him, to help his baby brother? We wanted to take the most vulnerable one as first priority, but Fulton was (and still is, I think) vulnerable, too.

So many appointments.  I left the 3 kids for longer stretches than I ever had before. So much information to take in, so many factors to consider – for surgery, and then life with a child with spina bifida.

The repeated refrain – you can say no until they put you under.  Almost too much freedom.

A chance I might be able to hold him immediately after the c-section, and get more bonding time in those early days?  Big one on the pro side.

I’ve been doing a Bible Study with some women recently and the author spoke of God’s sovereignty.  It made me think in hindsight, “Why didn’t I just trust God more?” and wonder,  “Did I trust him enough with this decision?” But we don’t know the outcome.  We can only make the best decisions we can with what we have and trust God with the outcome.  There is no shame in wavering trust during hard times.

I won’t list out all of the possible risks and benefits, but know that fetal surgery is not a cure, and is not for every family.  It is a very personal decision and every family needs to make that decision for themselves.  People with spina bifida have a wide range of abilities whether they had pre- or postnatal surgery.

Looking Back, Vol. 4

D Day.

Diagnosis Day, one year ago today.

In one sense a day etched in my memory, in another it’s hard to recall what it really felt like to find out Selwyn had spina bifida.  I almost feel like a different person than I was that day. We’ve been interviewed several times now and they always want to know what it felt like to hear the news – and I want to say, what do you think it felt like???

Emotions find a way out. I’d been going to a prenatal yoga class that ended up being just for me as everyone else left it for various reasons.  The class the day after D Day I struggled to balance my body in the poses I had practiced previously.

As the days and weeks passed we had processed our emotions and accepted the diagnosis . Then we began to tell other people.  One thing we weren’t prepared for was having to deal with other people’s emotions and reactions to the news.  An added burden to this new life we found ourselves in.

The movie The Matrix came out 20 years ago.  In addition to D Day, today is also the birthday of my camp crush/pen-pal.  That means we talked on the phone 20 years ago about The Matrix.  I preferred our written letters to calls.  He tried to get us to email each other but I resisted. If we’d have gone to camp in 2019 we’d probably have become friends on facebook and stayed connected and who knows how differently my life would have turned out!  It was a different world . . .

One year ago today things got set in motion for us to do fetal surgery.  There were phone calls with a geneticist and a nurse and maybe more.  We were lucky that all of our doctors were very positive yet realistic.  Many people receiving this diagnosis are given a very bleak outlook on life for people with spina bifida, but aside from a single question just  to check if termination would ever be an option for us no one ever hinted at it again.

We walked out of the ultrasound office without any pictures printed of our baby.  We actually thought our ultrasound tech was sort of cold, but that was probably due to the information she had to deal with.  We had her many times after the surgery at our weekly ultrasounds and she was much warmer. Our sweet neurosurgeon printed us pictures from our MRI later, taking the time to scroll through and find some good ones, including baby giving a thumbs up!

So. D Day. Somehow we faced the rest of the day – telling our family and facebook that we would have 4 boys (I was thrilled!), calling my Grandma, picking up the big kids and taking them to the gym . . . Sort of a blur that would turn into a whirlwind couple of weeks of appointments and decision making . . .

Looking Back, Vol. 3

This girl didn’t know whether she would have 4 boys, or be adding a little girl to the mix (and she honestly didn’t care!)

This girl didn’t know how much her life would be changing 9 days after celebrating Easter with 3 little boys wearing ties.

This girl was living in blissful ignorance of her baby’s diagnosis.

This girl today, had this picture come up one year later, and she’s feeling the anxiety welling up as D Day approaches. There’s a heaviness and sadness to looking back.  Seeing myself here was a strange feeling. Who was I then?  Who am I now?

That girl didn’t know this amazing sweet face, and that it would all be ok, and that it’s a blessing that life keeps on moving.

 

It’s ok to not be good at things.

I’m a work in progress at being a work in progress.

Maybe you already know this, but it’s ok to not be good at things if you are new to them, or if you haven’t practiced, or even if you have practiced.  And it’s ok to keep trying.  I think it’s ok to give up, too, but I tend to give up too easily if it’s hard.  Maybe you don’t have perfectionist tendencies to fight like I do.

An artist I love just gave out free sheet music to her patron on Patreon, and I sat down to play some and it was hard!  I hardly ever get to play piano lately, so that’s ok!

I’ve started in on the millenial trend of owning houseplants (because I need more things to take care of than the 4 boys I guess?) and I’ve been reading up on them, and found out I didn’t know that much and that I am truly a beginner.  These people know so much more than me!  I need to re-pot all my plants in pots with drainage holes! And it hit me like an epiphany – it’s ok to be a beginner, because, I am indeed a beginner.

(2 months into owning my Bella Parlor Palm)

A woman from church graciously riding along to an appointment told me about starting Tai Chi, and that she isn’t very good at it but she knew that was ok because she’s only done it twice.

I’ve dabbled in hand-lettering off and on for a while now – I even opened an Etsy shop and sold nothing!  Those were a little better than these because I used a more forgiving method.  Using a brush pen you only get one shot!

 

Mr. 6, L, my little budding perfectionist, said (quoted above on my practice page): I thought you were just practicing, that looks pretty good!

I appreciate the compliment, but I’m also trying to teach him to have the growth mindset I am lacking.

I’m pretty happy with the word “wisdom” in this one! And wow, my mom-brain conflated the slash and the 1 for 19 in the date . . .

It’s also hard for me as a perfectionist to be reading my one year Bible on whichever date I last read, and that I am in my second year on this read through.  But isn’t it better to read sometimes rather than not at all??? That is harder for my personality than you might think.

So my little hack is on days I read, I choose a bit to practice my hand-lettering and then I get a hobby and spiritual formation in one shot! Life with 4 boys is busy so I need all the time hacks I can get.  Have I mentioned no one in this house naps????

I also have humbled myself enough to print out hand-lettering practice pages!  Practice! Because it’s ok to not be good at things!  It’s ok if the song doesn’t come out right the first time you sing it! Did you know that already???? I’m still learning!  And that’s ok!

My perfectionism doesn’t even like that I’m not perfect at learning to not be a perfectionist . . .

Looking Back, Vol. 2

One year ago today we saw Selwyn (yet unnamed) on an ultrasound for the first of many times.  There was only one baby, with an appropriate heart rate, and the exact size he should be (i.e. our reckoning of his time frame matched his actual time frame).

At the Christmas party we go to every year to catch up with friends I had been either pregnant or bringing a nursing baby along for the past several years – but I actually wasn’t in 2017, so my friend the host suggested we go home and make a baby.  That is probably what happened.

His picture doesn’t look like much – your typical bean with a discernible head.  But my Mom thought it was so perfect and was sort of obsessed with it.  Our surgery nurse still calls him perfect over and over, and while we know better on a few different points, it is nice to hear that word.

Last year at this time I was still nursing Elliot and Fulton, the latter still sleeping in our room, with no plans to stop before either of them were ready – but Elliot ended up losing his latch, so in February we decided together that he was done and we both cried.  In May, Fulton had to be helped along so that we could do the fetal surgery in and I weaned him fairly easily – but I’m getting ahead of myself 🙂  In any case, this January I am only nursing one baby where I thought I might be nursing three kids when Selwyn arrived.

Since we saw his little body and heart working, we prepared to tell the broader world a couple weeks later.  There are a lot fewer ideas out there for announcing higher number pregnancies, and a lot of them had an apologetic feel to them, or even a promise of being done which I didn’t want.  We have nothing to apologize for and make no such promises (despite the probability).

We were still a couple months away from diagnosis day and the whirlwind that followed, but life was busy with 3 active boys and we just kept living and getting more used to the idea of baby number 4 coming – the number of kids I’ve wanted for as long as I can remember.

Looking Back, Vol. 1

One year ago we found out about you.

Someone in a breastfeeding facebook group posted about pregnancy tests, so I decided to take one, too – even though it was early. It was positive.

A year ago on Thanksgiving we found out we wouldn’t be having an early August baby. I think we had a month or two before Thanksgiving that told us not June or July either. We were now looking at due dates that were into my Mom’s school year starting! How would we manage! Nobody said anything at Thanksgiving, the time when we announced at least one of our other pregnancies.  I plugged in numbers into due date calculators over and over again, imagining what having a baby around then would be like.

One year ago you had already been alive for 2 weeks, and soon you would have a heartbeat and share my bloodstream.

Last Christmas was too early to tell anyone and nobody asked us! It was a miracle. I’m not a good liar. But by this point people have figured out our 2 year “plan” (in quotes because only God is in charge) and must be wondering.

The big 3 boys all used the same infant carseat but it was about to expire. This past January I found a carseat, base, stroller, and stander ride-on for the stroller on clearance for less than our original carseat alone cost! While we were checking out I spilled to the cashier, and Leland overheard me, thus ruining any cute reveal to the big 3 boys. We urge him to keep quiet, but a few days later we need a place to store our new supplies so we tell my parents by bringing them to their house.

A year and a half ago I started taking extra folate in hopes of preventing lip and tongue tie in hypothetical future babies. I began to learn about MTHFR gene defect and the problem with folic acid. Even now I have not been tested so I don’t know if I have it but based on many things I’m going on the assumption that I do. You still had a lip and tongue tie anyway.

A year ago your little spine was formed and did not close all the way. You were already you and already loved and already had spina bifida.

And soon our crazy year of 2018 would start, and you would be born well before your Grandma’s school year.

Oh, sleep, you elusive creature . . .

Three reasons I don’t get enough sleep:

• Leland
• Elliot
• Fulton

Three bad dreams I’ve had about singing in church tomorrow:

• Forgot my music and Mom (who is the music director) was very mad
• People clapped at the penultimate climax not the ending  (people don’t even usually clap for songs in our church)
• Had to play on a not-full-size keyboard, standing up, with a much too low music stand I couldn’t see, and I messed up a lot

Four reasons I’ve had trouble falling asleep:

• Too much sweet tea from Chick-fil-a
• Rehashing traumatic moments from Downton Abbey
• A little gurgle in my belly had me convinced I had the stomach bug (we’ve avoided it this year so far!)
• I couldn’t remember our third pick girl’s name, which is hilarious because we’ll probably have 7 more boys before we even have a girl to use our first pick. I still can’t remember the third pick.

Sunday Best Vol. 2

Had to pop in a quick post to link up here!

Mom bought this shirt in 2 sizes from Target and graciously gifted me the one that didn’t fit her!

Raided her closet for matching cardigans and here we are in all our cute matchiness, with a cute photobomber (I seem to remember him popping in to photos in another post . . . )

Anyway, here we are!

Hoping to get into blogging some more but we’ll see what happens . . .

Turns out I am an abstainer after all.

Way back when before all these kids, I was a music therapist at a psych hospital, and I ran other groups as well.  I used to share all kinds of ideas and articles, including one from Gretchen Rubin on abstaining vs. moderating which she describes here and further discusses here.

I would talk about it perhaps in terms of addiction, or maybe just in a positive thinking type group, but I generally thought I might have been a moderator – but what it boiled down to was I didn’t want to fully give anything up.  That is no way to live! Surely I can moderate my diet/internet use/what have you.  I need my desserts, darn it!

But I can’t, and in the second article, perhaps she is arguing that maybe only very few especially temperate people can truly be moderators.  My Grandad, for instance – who just passed away this year – I think would be one. And then there is me.  I recently read about someone’s experience with compulsive overeating and it sounding a little too familiar.  If you’ve watched the new show This Is Us I can relate to Kate quite a bit.  And you might look at me and say well you aren’t nearly as big as her, but it wouldn’t take too many steps for me to get there. (I’ve since stopped watching after episode 2 – I have enough stress in my life, I don’t need anxiety from a tv show!)

So how did I come to this new self-knowledge?  Brian and I are rewarding ourselves with $5 a week for maintaining certain rules and mine is no sweets, except for a snack at church if available during coffee hour, or a special occasion like a birthday or outing.  And it’s easier.  It’s easier to have a rule.  I am, at heart, a rule-follower. The rule becomes freeing.  I can even scroll through pinterest, note how delicious everything looks, and move on.  I am no longer tempted to put things in the grocery cart because they are simply not allowed, and then I don’t have to try to not eat half a container of cookies that are in the house.  Our allowance of sorts is helping the budget as well, by cutting down on extraneous spending.

I’m tempted to use a further example, the thing, ahem, you usually think of when it comes to abstaining.  I’ll just leave that there for you to ponder.

So which are you?  Any true moderators out there?  Any rebellious rule-breakers who balk at abstaining?  Anyone else like me who is finding (or has found) freedom in boundaries?

 

 

I Wear My Great-Grandma’s Clothes, I Look Incredible Vol. 5, plus a bonus!

Well lookie here – some pictures from last December for your enjoyment.  Great-Grandma’s clothes were not baby-bump friendly!

The skirt was my Great-Grandma’s, with a white cami, gray sweater, and that all felt a little too bland for me so a sparkly scarf.  And of course my good old black flats, and a cute then-three-year-old.

 

I need to work on looking natural, and maybe somewhere other than the church nursery to take pictures? Sundays get a little crazy in our household so we do what we can!

And a Bonus!  My Great-Great Aunt Winifred made pretty things, and sadly this sweater no longer fits, but here is a glimpse of the neckline:

I think I wore this sweater when I was in 4th grade so understandable that it isn’t the best fit now.

Maybe that the baby belly is gone (who am I kidding? The baby is out, but much of the belly remains . . . ) I will find some more old clothes to wear!