My voice through vicarious grief

Another almost two years have past since writing. Oops.

Apologies, but life with three kiddos leaves little time to gather thoughts in the same way that I use to. My brain is down to about 25% capacity. Did you know that? With each child, your brain's function drops by 25%... so... those of you with four or more kids? Well... do the math ;)

I wish I had the mindset to post a fun update on family, and how big Obadiah is getting (holy moly he's almost TWO) and the pure joy he is to our family. But the honesty of my weighted heart tells me that's for another time.

I've struggled to find words for almost a year now, to the heaviness I've felt as waves of vicarious grief wash over me again and again. It's a grief not many can understand because it's not a tangible grief, or even an imminent grief. It's a grief of the "what-ifs", a grief of the unknown future. A grief of what could be. Don't hear what I'm not saying. It is not a rooted fear, per-say. Yes, my confidence rests in God's perfect will and sovereignty. He numbers our days. He knows our plans.

But oh, how my heart grows burdened with the unknowns for my daughter.

Let me share a glimpse into the little-known world of medically fragile/rare genetic disorder parenting. 

But, wait. First, let me share a glimpse of the wonder and beauty that is Brielle Julianne Tack.

 She is a fiery tornado. 

She can snatch a snack from out of your hand faster and further-reaching than you would think humanely possible. 

She can out-eat a full grown man and still be asking for dessert. She has more energy than my toddler. She has as much sass and attitude as I did as a kid. In many ways, she's my mini-me.

 

She finds ways to sneak into rooms and cause mischief when you're sure you've "Brielle-proofed" every inch of the house. That one cracked door is a gateway to the forbidden Eden full of small objects, breakable treasures, and the unattainable delights. She knows no danger. 

She speaks a thousand words with a single glance in those wide sea-green eyes. Her eyes are truly her window and her voice. A soft touch, a quick face-grab, a look, a sigh, a burrowing of her head into my chest. She says it all.

This is Brielle. My now-eight-year-old walking miracle. She defies odds. She is grace in the form of a bouncy curly-headed blonde beauty that I call my daughter.

But she also suffers. 

I watch how seizures ravage her body every month, sometimes 20+ a day... trying to set her back from reaching milestones. Trying to take away her fire. Trying to dampen her spirit. Trying to ruin any sense of routine or normalcy in our family. Trying to take her away from us altogether. 

Epilepsy is a monster that we constantly fight against. Genetic epilepsy is a beast far worse, with its shifting and changing and resisting all matter of medication and medical intervention. It's a battle we often have to lay in the hands of Jesus. Oh, the prayers I have prayed with tears over my daughter. In the middle of the night after yet another attack from the enemy. The unanswered questions and unanswered prayers. Why has no healing or wholeness come? What purpose does this serve? What level of unfairness is this for her to endure? To not only battle seizures, but to have no voice to tell me how she feels, what she fears, to leave me fumbling and searching for my best guesses to help her, comfort her, and to be her safe place. I hate it.

And then the grief hits like a brick wall at the unimaginable that I too often imagine and role play in my head. Nights I lay awake wondering if tomorrow might be the day. The day I'd find her gone, slipped into eternity. Nights I wake up and go to her room, just to gently lay a hand on her chest to ensure the rise and fall of her quiet breathing. I brace myself for the worst, when she sleeps in and I don't hear her "Eeees" in the morning. Every day I breathe a sigh of relief. One more day we dodged a bullet. 

Why do I fear this? She's healthy, yes. In spite of seizures and delays of all sorts, she's healthy and happy. And for that I am grateful. But, for those who aren't familiar, there is this looming word every parent of a child with epilepsy dreads to hear. SUDEP. Sudden Unexplained Death in Epilepsy. 

I'm sure most of you have heard of SIDS, Sudden Infant Death Syndrome, in babies. It's rare, but it unfortunately happens, and it's heartbreaking. Well, imagine that terribly rare situation, being even more likely to happen with your already-super-rare daughter, because she has seizures that could--for no apparent reason or cause--kill her. She basically won the crappiest lottery on earth. 

In the past year, our little tribe of STXBP1 families (there are only 500-ish children worldwide with the same diagnosis as Brielle), has experienced this heartbreak more times than I care to mention. Not always SUDEP-related (some other medical complications as well), but we've lost a handful of these sweet kids in 2020, and each time it feels like your own. We grieve and weep and cry out to God. We often allow our imaginations to take that scary rabbit trail for our own children. Will we be next?

But we can't live there, can we? And what of suffering and grief? What purpose DOES it serve? To the lowliest and destitute, for the frail and powerless. For those who cannot "contribute" to society. For those who cannot speak for themselves. The are utterly reliant on the care of those around them. They need advocates, voices, mediators.

And then, the truth drops in my lap like the warm, comforting words of a faithful friend.

"You were once powerless. You were once destitute. You had no voice that could advocate for your sinful state. You were utterly and fully deprived and separated from me."

Then He sent the mediator: Jesus. And He became my voice, held me up and called me righteous and pure. Not because of any goodness in me, but because of his perfect sacrifice for me. He clothed me in his goodness and stood me before a holy God as one acceptable and redeemed and whole. My mediator, my voice, my only hope for this wretched broken soul. And my only hope for the future wholeness He promises us all. Yes, even my daughter. He promises to make all things new. New earth, new life, free of sickness and pain and suffering. He's undoing all that's been done in the fallenness of man. He's undoing the seizures. He's healing the mind. He's making the mute speak and shout His praises. He's bringing perfection and beauty out of all those ashes and fears and graves of lost dreams.

Will it happen today? Next week? In Brielle's lifetime? I can't answer that, and oh I wish I could hold on to all those dreams I have for her that never will be. To hear her say "Mama" and to do all the things we assume a mother and daughter will do together. But those dreams never were meant for her, at least not yet. Her first spoken words very well may be songs of praise as she runs--whole and healed--to Jesus on the other side of Eternity.

What a sweet gift that would be.

This present suffering isn't how it was meant to be. But through His goodness, our suffering has a purpose. To magnify the good that is to come, to thank Him for being my mediator and my voice, for carrying us through to a better end. For giving us hope.

Introducing Obadiah Tack (and his birth story)

So I'm not going to apologize for forgetting about this blog for a while. Hey, when you're busy with life and kids and then get pregnant... that's just what happens! So let's just pretend we know all about the past year and a half and skip to the good part of introducing our newest son ;)


 The Birth Story of Obadiah Ransom Tack

Since the moment we found out we were pregnant, I knew this baby would be my “wild card”. Everything about the pregnancy, delivery, and infancy has been different from my first two children.

We need to rewind to understand why.

In 2010 Judah was my micro-preemie at 25 weeks via emergency c-section. I went into preterm labor with no warning, thankfully holding on long enough for 'viability' (I don't care for that term). Even though he spent three months in the NICU, he has been my easiest baby. Although part of that may have something to do with getting on a good sleep schedule at the hospital.

In 2012 Brielle was my 39 week 6-hour natural labor VBAC baby. Everything went easily, though I was on bedrest for several months (and had a cervical cerclage to prevent preterm labor again). The birth was fairly quick and intense but calm and peaceful. Infancy was more challenging due to her genetic condition (that was unknown at the time), but she is much easier now.

So, six years later, and now in Texas, I wasn't sure what to expect with this baby. We chose not to find out the gender this time, and struggled a lot with our boy name! We didn't settle on Obadiah until about a month before he was born. Morning sickness and general feeling icky lasted far longer this pregnancy. I had another cervical cerclage but our doctor felt confident that I did not need bedrest. I'm very glad for that—although many days I ended up in bed anyway.

Scheduling a pilot around a natural birth was a little unnerving. I'm thankful Jonathan was not on a trip when I went into labor! We decided to fly Jonathan's mom out right before I turned 38 weeks.

36 weeks

She flew in on a Wednesday night (the same day I had my cerclage removed), I had a few hours of false labor that Friday morning. I was chugging the raspberry leaf tea, bouncing on the birth ball, and even light bouncing on the trampoline through the weekend. Anything to get baby moving! Sunday morning, March 3^rd 2019, I was sleeping and dreaming that I heard a “pop” sound. I thought to myself (in my dream), “huh, I wonder if that could have been my water breaking?” I woke up shortly after at 7am to discover a bit of wetness in my pants... followed by a stream of fluid when I went to use the bathroom. Oh my, I think that really was my water breaking! I got myself dressed, and realized how quickly contractions were already coming--about 3 minutes apart. Woke up Jonathan and Mary at 7:20, then I texted my doula and our friend Jan (who took pictures), and told them we were heading to the hospital. No laboring at home this time either! My kids like to come in a hurry! Before I left, I said goodbye to Judah, who insisted he be woken up before we went to have the baby. We arrived at the hospital by 8:30am and contractions were already enough to stop me and breathe through. They felt more intense probably due to the lack of cushion from the water bag. I stood at the nurses station for 10+ minutes waiting for a room. They weighed me and asked a million ridiculous questions. All while I was obviously in active labor. My doula showed up and I tried to get comfortable. I will spare all the details of the obnoxious and rude hospital staff during my labor and delivery, but I will say it was a stark contrast from Brielle's quiet and peaceful labor. I don't think they took my labor seriously.

My doula was amazing, talking me through my contractions which were one on top of another with less than a minute in between to recover. It was a more intense labor than my last one and I struggled to breathe and stay calm and in control. We had worship music playing, and I found myself praying often for God's strength to sustain me. I ignored all the circus of intrusive nurses and doctors and just focused on my doula. I labored mostly on my hands and knees, but was on my back for some of the pushing. I thought at one point the baby was crowning, but when I asked, the doctor just shook her head no. That was a bit frustrating. It wasn't feeling right and I was getting frustrated, so my doula suggested I switch back to hands and knees which felt much better. After about 20 minutes or so, I was on my back again and in a few more pushes, baby was out and immediately crying! He was born at 10:39am, just two hours after being admitted at the hospital. I think switching to hands and knees again periodically helped get him in a better position.

I felt so relieved to be done because it was the hardest thing I've ever experienced. At one point I heard someone say it was a boy, but I had to ask again to be sure I heard right! I was just so glad he was here and that labor was over! Jonathan had tears in his eyes after seeing his son for the first time. My first observation is how much hair he had! After a few minutes, Jonathan cut the cord and I nursed him skin-to-skin. Those first moments were precious. 

We waited to announce gender or name to anyone until after Mary brought the kids. I wanted Judah to be the first to hear that he had a brother (he knew the whole time it was a boy—even had dreams of the baby being a boy!). 

Then we told them his name: Obadiah Ransom Tack. Obadiah means “Servant of the Lord”, and Ransom after a character in the CS Lewis space trilogy, but most importantly Ransom meaning that Jesus paid the ransom for our sins! He weighed 6lbs 9oz and 18.5” long. I have been cherishing every minute with this sweet baby because I now have greater perspective of how fleeting these moments are—even the middle of the night every two hour waking up and crying... even the nursing around the clock days. They are worth it.

The prayers of many were felt during Obadiah's birth. Three hour fast and furious labor! It was crazy and intense but so good and I felt the presence of God in that delivery room, and His peace amongst the chaos and pain. We are thankful for another precious gift of a second son!

 

 

With full and grateful hearts,
Jonathan, Charisma, Judah, Brielle, and "Obi" Obadiah

He knows.

Display in the new waiting area

I got tears in my eyes during the grand opening of the new building at the kids therapy center, Midland children’s rehabilitation. They had put a permanent picture display in the waiting area and I was surprised to find a photo of Brielle prominently placed! The staff here love on her and care for her in more ways than I can understand. I’m so so thankful that God brought us out here to west Texas, not even knowing anything was abnormal about my then-six-month-old daughter... and how invaluable and crucial this place and these people would be for her.

But HE knew. ❤️

Brielle with her Physical Therapist, Brooke

Brielle is still our happy wild little girl. She speed-walks from room to room, and looks people in the eyes with wide excitement, speaking a whole volume without a single word. She’s getting more proficient at comprehension and following basic instructions like, "Time to eat, go to your highchair." or "Where is your toy? Go pick up your toy."

Custom gates Jonathan built!

Jonathan built custom “Brielle proofing” gates for the kitchen, as a safety precaution. She’s getting taller and entirely too curious. And I don’t have the money to replace all my dishware that she’s constantly pulling off the counters! Part of her genetic abnormalities include no awareness of danger, and the kitchen is full of those dangers. Necessity births ingenuity, thank you handy daddy to the rescue!

Love how much she is smiling these days!

In other exciting news, Brielle is on the waiting list to do a 30-day trial for an eye gaze communication device. If that sounds like something out of a sci-fi movie, it pretty much is. She will look at pictures on a screen, and the device’s camera will track her eye movement to detect which picture she is preferring. It will then “speak” that word for her! If she does well for the trial and seems ready for it, we will pursue purchasing one to give Brielle a voice. Pray she is ready to understand and engage appropriately, as this could be a huge milestone towards more independence and understanding of her needs and who she is! It would be wonderful to “hear” my daughter speak her own thoughts!


This beautiful girl continues to teach me so many things. It's hard to believe she will be five years old in December! I find myself daily looking at her in awe of how wonderful of a gift she is to me, and I can not imagine life without her. 

Walking miracle

Somewhere along the way I forgot to post an update for over a year now... and boy, do we have a lot of updates to share!

In April of 2016, Brielle was diagnosed with the rare disease of the STXBP1 gene mutation. We still often feel the weight of this diagnosis, it's still hard at times. It's easy to compare with "normal" children. It's easy to be consumed with fear of the future, which still holds many unknowns. It's easy to grieve over the loss of our own dreams and expectations for our daughter.
But then we look at Brielle. And we see what a gift she is to us daily. How she can drive as mad, wear us thin, and then melt our hearts without ever saying a word. She truly lights up our life!



Progress report:
Brielle has grown leaps and bounds this past year! We are in awe of the miracle she is and how she is so determined to gain new skills and thrive--in her own way and in her own timing. I've discovered that Brielle likes to surprise us. She takes her time, then all of a sudden she takes off with a new milestone.

The most notable progress is she learned to WALK in November! Just weeks before her fourth birthday she took her first steady steps, and now... there are moments we are chasing her! She now roams the house freely, causing mischief when we aren't looking... it's a wonderful problem to have.
We had prayed in faith that she would be walking by the end of 2016. And the Lord was gracious in giving that gift to her (and us).

...Not only walking, but GROWING too!
For some perspective, you might remember when she was about two years old, we noticed a standstill in growth/progress. In fact, she was diagnosed with "failure to thrive". So much for that! SHE IS THRIVING NOW!
From ages 1-3, Brielle only gained maybe a total of 3lbs and an inch or two in the whole two year period. I literally had doctors tell me everything from "well you are small too," and "kids don't gain a lot of weight after the first year, it's normal" and even "she just needs more calories. Feed her french fries and milkshakes." NOT EVEN KIDDING. Trained medical doctors prescribed my kid FRENCH FRIES.
Thankfully, her endocrinologist re-tested her thyroid and we got her on proper medication at the end of 2015. From age 3-4 she gained about 5.5 pounds and over 3 inches, and moved up a size and a half in clothing!


But weight gain isn't the only progress. She's also happier and more engaged. She understands simple commands and instructions. She can climb into her own big-girl bed. She says "dada" (when in the mood). She can hold a sippy cup to drink out of it. She can stand independently from the floor (instead of pulling to stand). These were all things she wasn't doing a year ago! We call all these "little" things "inchstones". Special needs kids rarely meet milestones at the appropriate times or even in typical ways. That's why we celebrate all the in-between moments. For her, they are HUGE achievements!

All this to say, she is a walking miracle... a WALKING MIRACLE.

Now, one of our next big goals for Brielle is not necessarily milestone related, but social and relationship related. We are planning a trip to Orlando in May 2018, where we will meet dozens of other families with kids who have the exact same genetic disorder as Brielle. This is an incredibly rare opportunity, because as some of you might remember... this is an incredibly rare disorder! There are less than 300 known cases WORLDWIDE. She's one very special girl.
And next May, we will sit face-to-face with these kids. Meet their parents. Their siblings. Form relationships. Be in awe of the feeling of "normal" for once. They are all like us.

The thing about STXBP1 is that it is quite isolating. As much as we are so grateful for the support we receive from family and friends, who care for Brielle (and us) deeply. It is still something that no one can completely understand. They just haven't "been there". And that's ok.
But to be in the same room with possibly 200 people who "get it"... who are living this day after day. There's nothing that can explain that. To see a child crossing his legs just like Brielle does (yes it's a common trait!), to look in a mom's eyes and know what she is feeling, because you feel it too. To smile when you hear all the unusual squeals and shouts and noises that sound oh-so-familiar. To finally meet all the faces we recognize via the internet.
You see, we are no longer strangers. We've been connected through our kids and now they are family. Through our facebook group and other avenues, we ask questions, post pictures, updates, and ideas. We share each other's burdens and rejoice at each child's progress.

May 2018 will be a once in a lifetime.
Oh, did I mention Disney World is in the plans too?! (But shhh don't tell our kids! They don't know yet ;)