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 ;)

The Gospel According to a Minivan

Saturday night we were the recipients of extravagant generosity. I've cried three times since just thinking about how good the Lord is to us, and how blessed we are to have the co-workers and friends that we do.

We were given a new minivan. A MINIVAN. Not just a run-of-the-mill breadbox-shaped soccer mom van, either. It was a dream vehicle. We call it the spaceship. Bells and whistles and everything in between. It was a vehicle we knew would take years of saving to afford. Years of being in debt to obtain. It was simply: out of reach. And I was ok with that. I'm a practical person and would have continued to press on with our oldschool 1999 Dodge minivan with the hand-crank windows and the dashboard that went kaput 3 months ago.  With a short-list of mechanical problems (not to mention 160K miles), we knew it was less than reliable, but it was running and functional and we'd make due.

But this generous gift through my husband's company came purely out of appreciation and care for our family. It was extremely thoughtful and personalized to our needs. They found a way to pick out EXACTLY what we wanted (albeit something we never thought we'd have). And they handed us the keys without any expectations. They joyfully gave with smiles on their faces, and the love of Jesus bursting at the seams.

I've never received such a gift to this extent before (though we have received blessings of generosity from many over the years, which we are grateful for). But this to me seems like a beautiful picture of the Gospel. A picture of our Heavenly Father and how He cares for His children without exclusions or caveats or restrictions.

When God sent His only Son to the World for our redemption, it was a gift we could not give ourselves, that could not be bought or obtained even through great effort and hard work. Salvation was given to us FREELY.

And what should our response to this be?

Well, when given this van, my responses were all over the place. Speechlessness. Shock. Disbelief. Overwhelming gratitude. Some unexpected feelings, too. Suspicion, "Why me? What's the catch? What do I have to do to repay you? What do you want from me?" And even guilt, "This is too much and too good for me. I don't deserve this. Good things like this don't happen to people like me."

All of a sudden, I see the parallel between the Gospel and a minivan.

Just as we were given something freely that we couldn't earn on our own. So it was with God, generously and graciously offering us the gift of Eternal Life--something we could not achieve on our own merit.

And our response? Shouldn't our gratitude be even more so than how you would respond to receiving a minivan? Or if Uncle Joe left you a million dollar trust fund? Or if someone paid off a school or hospital bill anonymously? Or even if a friend brought you a meal and watched your kids just because they love you?

Shouldn't we cry and shout and be moved to speechlessness and our hearts be overflowing with thankfulness for his GREAT GENEROSITY through Christ and the cross? Shouldn't this eternal gift CHANGE us and motivate us and move us towards repentance and gratitude?

This minivan is a tangible reminder for me to be in awe of God's grace towards us. To appreciate and be grateful for his goodness and kindness, no matter what life brings... even when we don't get the minivan. Even when prayers aren't answered when or how we expect. Even when life is tight and tough and hard and sorrowful. I'm renewed in trusting that His timing is good and perfect and we are not forgotten. We are loved. And His gift of Salvation has already proven that.

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." --Ephesians 3:20-21

And now our response is: Let us use this gift to further glorify Him. It will serve our family needs for many years... and we are thankful.

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.
--Helen H. Lemmel, 1922

STXBP1: Brielle explained, but not defined

I am happy to report that we have the long-awaited answers to Brielle's health issues. ANSWERS. Full, weighty, real, hard, factual answers.

We had a whole-exome sequencing panel done for genetic testing 4 months ago. STXBP1 might sound like computer codes or a Star Trek spaceship, but to us, those 6 letters have consumed our world because it [finally] explains our daughter.  Our very unique one-of-a-kind daughter with a neuro-developmental genetic disorder that only affects about 150 reported cases WORLDWIDE.

STXBP1 means nothing to anyone unless you google it, and even then, it's a lot of medical jargon to filter through. But all anyone, including ourselves, wants to know is, "what does this mean for Brielle?"

Good question. And we kind of know some of the answer. Sort of.

But first, I want to say, I am thankful.

Thankful for a diagnosis. A name to explain everything. No more unanswered questions and fears and worries of the unknown.

I am thankful for the timing of technology. The specific genetic testing we did has only been accessible to the public for a handful a years. STXBP1 has probably only been named for about a decade. It is a newly-discovered genetic disorder. Brielle has been diagnosed very young compared to many, and for that I am grateful.

Thankful we are not alone. We are blessed to have already found a support group via Facebook specifically dedicated to parents of kids with this medical condition. Almost 300 members, 70 documented children represented. I have learned more about this disorder in just a few short weeks from this community than any amount of googling or talking with doctors and specialists. It is invaluable.

I am thankful that, long ago, the Lord prepared my heart for such a time as this. Since before I was born He planned to enable me to understand what it is like to live with a family member who has special needs and disabilities. My mother, who battled Multiple Sclerosis for about 25 years, unknowingly gave me the gift of understanding. I grew up watching her struggle with this disease, and watched others struggle to know how to interact with her and help her. What a beautiful gift she gave to her granddaughter that she never even had the opportunity to meet: the gift of [unwanted at the time] experience that has prepared my heart to care for my child in a unique way. Not to say that I don't struggle and it's not hard. But I do feel very grateful for my own upbringing, concerning Brielle's needs.



So, what does this mean for Brielle specifically? What will life look like for her long-term?

STXBP1 is primarily a genetic disorder that affects development, intellect, and often causes seizures.
She may stop [and restart later] seizure activity. She will have limited motor function--but to what degree, we don't know. She will have intellectual disabilities and limitations. She will most likely live a normal life-span, assuming no other medical conditions complicate things. And we expect that she will probably not live independently from us. It explains her muscle weakness, her oral fixations (sorry if you ever got a "love bite" from Brielle ;), her lack of communication, her seizures, and her lack of development in general.

What this disorder doesn't explain is her future. Each child is different. Each child has varying degrees of disability, communication, seizure activity, and skills. Some run, jump, talk, and go to school. Others do none of those things and are more medically fragile. Brielle, so far, is somewhere in the middle.
So Brielle will need to show us what she can do, what skills she can gain, what she can achieve over the years. We will go at her pace and timing--trusting that it's God's timing. Genetics may explain her on paper, but they don't define who she is and how God sees her. It can't define God's ability to work in her life in whatever way He sees fit. And it can't explain her beautiful heart.

Although we wish this was a "find X disease and give X treatment and then she is cured" situation... God has bigger plans than we can understand. We don't doubt His goodness. We're not angry or fearful. He has given us peace and a growing love and understanding for our precious girl. We continue to receive the gift and consider it a blessing to parent such a unique and special child.


Just days after we received her diagnosis, I heard this song on the radio. Peace overcame me as I was reminded of Who cares the most for us. Who cares the most for our daughter? It is the very One who created her. She is not a mistake, and He is not surprised. He is still in control. He will anchor us, sustain us, and carry us through.

You, as our friends and family, have been our greatest encouragement through this journey. The way you care for, pray for, and love on our daughter is unmatched... and we are grateful.
I hope you don't see this as a journey ending. It's really just beginning! We covet your continued prayers and encouragement as we embark on a lifelong journey in caring for Brielle. It will take a village, and we are glad you are in our village!


**In other smaller but still important news: Brielle's thyroid is functioning at normal levels again thanks to her medication over the past 6 months. And she has gained 3 pounds and grown 1.3" during that time!

What a difference two months can make!

This is a post that I have been anticipating and hoping to write for a very long time. It wouldn't be too much of a stretch to label these past two months as a series of mini-miracles and milestones in Brielle's little world. We are far from through searching for all the answers, and I know she has a long road of progress ahead of her. However, the Lord continues to keep us hopeful and has brought us far on her journey in a short time.

Since we last wrote, Brielle has seen three specialists, had another EEG, switched medications, and added one medication. She also accomplished a big milestone and is more active than we've ever seen! This summer was certainly a whirlwind for her.

In a nutshell, we now have her seizures under control with the new medication. And we suspect that removing the previous medication is contributing to her alertness, new activity, and happy demeanor. She went from an occasional crawl here and there to finding myself saying multiple times a day, "Where did Brielle go?" I have never been so happy to have to fully "baby proof" our entire house! She now crawls from room to room on a daily basis with gusto and it is pure joy to watch.


I guess Brielle figured while she was at it, she may as well start pulling up to standing too! In the past week she has mastered this skill and she looks for anything and everything to pull up on now. We even had to lower her crib mattress! She has also made attempts to "cruise" on furniture, so knowing her personality--once she figures it out, she'll have that mastered in no time too!

one-handed standing & her adorable ankle braces

standing up! she now does this
without cheerio motivation ;)

Six months ago I certainly had my doubts about whether or not I would see her crawling or pulling to stand. Now I have hope that perhaps next year we might see her walking as well! We are so proud of her progress and often have a prayer of thanksgiving in our hearts as we see her getting around so easily. She seems so pleased with her accomplishments, too. :)

One other huge praise report is that FINALLY after almost two years of countless doctors and tests, we have an answer to some of her concerns. She has been diagnosed with hypothyroidism and is now taking thyroid medication to increase those hormone levels. I try not to focus on the "why didn't someone catch this earlier" ...shouldacouldawoulda. I am just thankful for SOMETHING to finally make sense, and something that can easily be fixed. This could improve many things for her... I'm sure in ways that we will not even expect. We are very hopeful that we will see more progress, activity, strength, and alertness over the next six months or so.

So, enjoy some happy pictures and videos of our darling little girl showing off her new skills, her new adorable ankle braces, and her proud smiles of a job well done. We thank you for your endless prayers and ask they continue as we move forward with hope.

swinging is her favorite!

lowered the crib. proud look ;)

love this smile!

You will lead us through the storms

It's been a rough week in Brielle's world. Her seizures have become uncontrolled for the past week, despite medication, and we now have a myriad of tests and doctor visits lined up once again, just like this time last year. Another EEG, a new pediatric neurologist... and we've scheduled a consult with a genetic counselor in Fort Worth next month as well, to get a second opinion before running labs for the genetic tests. So far, every single test, lab, and appointment has left everyone clueless because she is the healthiest mystery ever. All tests come back negative, all labs come back clear. On paper, she is perfectly healthy. But obviously something is still amiss.

But God is still good. And as I rushed out to the pharmacy to pick up a second prescription for our little girl today, this song comes on the radio. Tears burn at the corner of my eyes and I can't help but sing-pray the song out loud. It is my heart cry in this season. It is all we can do. It is especially what we should do.

"My Lighthouse" 

by Rend Collective

In my wrestling and in my doubts

In my failures You won't walk out

Your great love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

In the silence, You won't let go

In my questions, Your truth will hold

Your great love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

My Lighthouse, my lighthouse

Shining in the darkness, I will follow You

My Lighthouse, my Lighthouse

I will trust the promise, 

You will carry me safe to shore

Safe to shore

I won't fear what tomorrow brings

With each morning I'll rise and sing

My God's love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

Fire before us, You're the brightest

You will lead us through the storms

He will carry us safe to shore. He is our peace when the storms rage. Instead of asking "why send the storm?" or "Are you here when the skies grow black and the fear begins to rise in my heart?"

But I know He will carry our daughter through to safety, and He brings peace in the midst of stormy hearts and unanswered questions. 

In other news, this little one is CRAWLING now and pulling on furniture to high-knees! We are hopeful that the next step is pulling to stand. We just had an orthopedic appointment today and she will be getting some ankle braces and some other equipment to strengthen her muscles and bones, and encourage her next goals: STAND AND WALK!

Thanks for STANDING with us in prayer for our sweet Brielle.

In darkness, we embrace the gift

We continue with questions as we swim through the murky waters of an unknown future for our daughter. But we are never without hope. Never.
Just as we trusted the God of the universe with every intricate detail of pregnancy and delivery of this beautiful girl, we will trust Him with every day of her life. Regardless of the unlikely, uncertain kind of life she has right now. Regardless of the number of her days. Regardless of her needs. We know He can meet them, and in many ways better than we ever could.

Brielle is almost 29 months now. Her therapy seems to help in small ways, and she is thoroughly enjoying her hippotherapy (horse therapy) once a week now, too! But progress is painfully slow--slower than we hoped for-- and we are reaching a threshold of patience once again. A crossroads is emerging, and we must once again choose which path to take, which tests to run, which road to go down with our little girl in our search for answers.

Our next step seems to be genetic testing. Something we'd considered before, but held off to see if removing seizures from the equation was the only hindrance. Now, we're not so convinced this was just about seizures. Perhaps there's something else going on that we need to address.

Here's the thing with genetic testing. It is scary. It is overwhelming. It is crazy expensive. And, even if conclusive, it is often left with no real cure or answer. Just a label or title. A name to put to the problem we're facing. It also brings about fear. Fear of finding an answer we don't want to hear. Fear for her future. Fear for the health of our future children, if any. Fear fear fear. Ironically I fear being fearful. I actually worry about the possibility of fear. Sheesh, if that isn't a vicious cycle, I don't know what is.

And then I think on the book of Job in the Bible. The guy had everything, and then God allowed everything, including his own health, to be taken from him-- just to prove his faithfulness. Even his own wife gave up on him, and God...

2:9 His wife said to him, “Are you still maintaining your integrity? Curse God and die!”

2:10 He replied, “You are talking like a foolish woman. Shall we accept good from God, and not trouble?”

I don't want to be the foolish woman. I want to accept all things from God. Both what I see as good and what I see as bad. Both can be blessings, if we are looking for His hand in it. Both offer an opportunity to trust and grow in our faith.

I've been reading the book "One Thousand Gifts", and it is extremely timely in this season of life. It's the challenge to see everything as a gift from God. All things. Seek the gift, seek the beauty; even in the broken and hurt... we can find grace, healing, hope, and beauty from our Creator. Our Father, who loves us. He turns even those darkest things into something good--if we look for it. Not to say that He is the Author of evil-- by no means! But He is the Author of our faith. And he brings about good things to completion, if we are willing to embrace with open hands what He gives us.

Like I heard just last night from a friend--
To the things we like and enjoy, shout to the Lord, "Thank you!" and have a grateful heart. And to the things we don't understand or don't like, tell God "OK", and accept in faith. Like a child who is obedient even when they don't feeeeel like it, or when they don't understand their parent's rules. We can be obedient--without fear. Out of faith, because He parents us PERFECTLY. Without flaw or fail. We can trust in His goodness wholly. We can lean on our Heavenly Father, even in the hurt and confusion... no, especially in the hurt and confusion.

"Shall we accept good from God, and not trouble?"

These are weighty, raw, and painful questions. It hurts to hurt. It hurts to see others hurt. It hurts to see others suffer, to see our own suffering. To not understand, to question God's intentions, to question His love for us, to question ourselves. But those questions and hurts can draw us to our Creator, to grace and contentment. Even in the ugly, messy, terribleness. Even in the "why's" of life.

And our daughter? Shame on me if I miss this gift. This precious beautiful gift. This messy, imperfect, break-the-mold gift. This "God is my might" little Brielle-girl, with the sun-gold hair and the sly smirky smile and the unadulterated ocean eyes. The giddy greetings and the ornery protests and the quiet contemplative soul. The white-wrinkled fingers, soft from all-day-sucking, wet with drool, patting me softly on the face. The gentle goodnight nuzzle in the crook of my neck at day's end. These are gifts. She is my gift. And I embrace it.

A new year to persevere.

Hello, twenty fifteen!

It's hard to believe a new year has started. I'm not sure if I'm ready for it, but here it is.

Brielle turned TWO a few weeks ago on Christmas Eve. My sweet little girl has certainly had an eventful holiday season. Not like we hoped, but still hope-full.

In early December, after meeting with her new doctor, Brielle had an MRI scan that came back clear of any concerns! We are so so thankful that her brain is healthy and no major damage has been done due to seizures or otherwise. Gratefully we can check that one off the list of possibilities. 

Shortly thereafter, she was put on a low dose of anti-seizure medication to see how her body responded. Did I mention her doctor sent me a link for a prescription coupon that saved us $150? Yes, because he is awesome like that :)

After a few days, Brielle was adjusting pretty well to the meds and seemed happy and motivated to "practice" her sitting up and moving around more. It was the glimmer of hope that we needed. I told her she may as well give herself a birthday present and start walking. Ok, I knew that was a lofty goal-- but it was wonderful to see her active.

However, after a few weeks, we increased her meds again, with less-than-stellar adjustments. Brielle was, to put it bluntly, miserable. Fussy, whiney, lethargic, unmotivated... MISERABLE. We hung on for a few weeks, hoping she would start to feel better and adjust to the medication, but she never did. So, the birthday and holiday festivities were a bit rough on her, unfortunately. 

Good news is, though, we dropped her dosage back down and in just a few days have already seen her improve in her mood and motivation. I missed seeing those sweet smiles and cute little noises. I am enjoying having our little girl "back" after a daunting three weeks. Please pray we can determine what is best for her regarding medication.

So what's next? Therapy. Prayer. Waiting. Persevering.

We're holding off on a second EEG, only because she is on medication and it is less likely the EEG will show any seizure activity while on it. To be honest, I'm relieved that we don't have to subject her to that test again right now-- not to mention the travel and costs involved.

We are eager to see what the Lord will do in our daughter's life this year. We are hopeful, and cautiously optimistic. Continuing to trust in His plans for her. We know her "timeline" will look very different than most kiddos. We are learning to accept that and adjust to it. There is still a grieving process that comes with recognizing that our child is different and has special needs. But more importantly, it allows us to be free to just meet her where she is, and love her without expectation. 

Watching our son, Judah, love on his sister so uninhibited... without judgments or worries or comparisons. It's eye-opening. He adores her, gives her big hugs and kisses on the head. He tries to explain things to her to comfort her when he knows she's upset about something. He involves her when playing together, he treats her equally--despite their age and ability differences. I am learning so much from my children. God is teaching me through my children's unconditional love for one another. Lord, may I love like that.

Hope Rekindled: An update on Brielle

God is never late in answering His promises.

Some answers take a very long time, though. Much, much longer than we expect, want, or hope for.

However, I continue to see His faithfulness, even when I begin to lose faith myself. And just when I need it the very most, He swoops in to catch my heavy heart before it falls. It is true. He is a good and faithful friend to me. He is a compassionate Father that never abandons or fails. He is quick to hear us, and eager to care for our needs.

It's just not on our timeline.

I've been quiet on Socialmedialand. Intentionally quiet. Mostly because, for many months,  I have not been sure what to say. When people ask how our daughter is doing, the same daunting response fumbles from my lips: nothing new... keep praying.

I wrote a very lengthy blogpost recently about that; sharing the longing, anxious, dark moments I've felt lately regarding Brielle's health issues. But I just couldn't bear to post it. It was too close to home... too depressing. I felt myself slipping close to hopelessness.

But then, something happened.

Brielle is still Brielle, nothing has changed there. But I firmly believe the Lord orchestrated a series of events last week that is finally bringing a glimmer of hope to her situation and progress.

You see, we've been feeling abandoned. Not by God, or our family or friends (quite the opposite)... but by the medical world. Doctor after doctor, hospitals, therapists... all dead ends. Silence.
I've dealt with some anger and frustration. Feeling as if they've dropped our sweet daughter by the wayside. Why aren't they being proactive? Why aren't they doing more to help her? Do they know what's wrong but are avoiding telling me? Do they know more than they lead on? What happened to "do no harm"? Is neglecting and ignoring her needs harming her?

I didn't know what to do. I felt as if we were flatlining in what to do for her. I felt like I was flailing around in the darkness. I felt like a failure as a mother. I felt like my prayers were muted. But at the same time, I hesitated. Sure, we had her in therapy... but that hasn't seemed to make a big difference. What next?

So, we prayed.

And last Sunday, I felt an urgency to ask our pastors to pray over her (again). She had been having some mild febrile seizures quite often that week and I was just desperate. I knew going to the hospital wouldn't help. And she's seen most of the other doctors and specialists. But "riding it out" and not DOING anything about it just seemed unthinkable to me.

So we pulled aside one of our pastors, and mentioned our concerns (he also happens to be a nurse and knows Brielle's situation well). A few other friends were standing by listening. All of them, in agreement, suggested seeing Dr. Nabulsi here in Midland. Their kids all went to him and they loved him. He also seemed to have a knack for the difficult cases. However, there's a catch: his waiting list is about a YEAR long. So, we'd have to pull some strings... and pray. A lot.

Over the next 24 hours, my friends called to refer Brielle, and they also sent him a personal email, pleading for our daughter's case. Then I called to set up the appointment. They turned me down... flat. No exceptions, no mercy. I was heartbroken. I felt as if my one glimmer of hope was completely shattered. I cried. Then we prayed some more.

Then, hope rekindled: The doctor read my friend's email, and asked to call me! Within hours, he called me asking all sorts of questions, then asked for ALL Brielle's medical history and records. I spent hours compiling emails, pictures, and records to send him. Six emails actually. SIX. "Surely this is overkill," I thought. "There is no way he is going to read all this."

Two hours later (at 8pm, mind you), he's TEXTING ME asking for even MORE info! I have never ever in my life received such personal communication from a doctor. After 30 minutes of texting him answers and pictures of Brielle, he ends with. "Ok, you need to come in. Tomorrow if possible."

I was floored. God was moving, in a hurry. To have such a well-known pediatrician-- who specializes in difficult cases-- take such personal interest in our daughter... it's truly a miracle.

We went in the next day, fully expecting the receptionists to give me a difficult time or at least bombard me with questions. I said a silent prayer, "God, make a way where there is no way... I will give ALL the glory to you, if this doctor is the right one for Brielle."
...And sure enough, they just handed me my paperwork and waved me on as if I was royalty, no hesitations.

"Thank you, Lord!"

At the end of our appointment, after sharing his observations and suggestions, Dr. Nabulsi looked at me and asked, "Do you have any other questions?"


I literally felt weight lifting off my shoulders, "Actually, for once... I have more answers than questions."


I share this God-appointment with you, not to turn this doctor into our Savior. He isn't. He is just a man. But he is a man that God has placed in our path that has a gift and talent, and at the very least he has connections to those who can help even more.
But most importantly, he is compassionate, driven, and proactive. Qualities I have not often seen in our journey with Brielle (unfortunately). I expect him to follow her case until we find the right answers and get her the help she needs to thrive. I am so incredibly thankful that even though we don't have any more answers than we did two weeks ago, at least we have three important things in place now:

1) HOPE
2) Direction, a plan of action (see below).
3) Direct support from a knowledgable doctor who is determined to walk alongside Brielle.


If you're still with me reading this, here is an update on where Brielle is now, and what we have planned in the foreseeable future for her medical care.

------

Reality is sinking in as we are nearing Brielle's second birthday in just a handful of weeks (Christmas Eve!). Even the thought of planning her birthday leaves me feeling anxious. When I see children her age running, talking, playing... my heart is heavy. She isn't like the rest of them.

Sometimes I fear that I will get our answer and not like it. I fear the answer could only bring on more questions and concerns. I want an answer, but I don't.
Don't get me wrong, I know it could be worse. It could always be worse. I have seen the pain of "worse" in many friends and family. I am very grateful for the gift of my daughter, her health, her cheery demeanor. I wouldn't trade her for anything. I don't take those things for granted, because we aren't promised earthly perfection, nothing in this life lasts. We must hang our hope on the promises that are eternal, in Jesus.

Brielle is now 22 months old. And I so desperately wish I could share a new milestone since the last update... but I can't. It pains me to say that.
She is severely behind, globally, in development. Grueling and painfully slow progress, if any at all. She seems to have 'stalled out' developmentally, and uninterested in, well, most anything. She is well over a year behind now. She's around the 8 month mark in almost all areas. Her muscles are very weak, and it's still hard for her to sit up, let alone the occasional "scoot".
On top of that, she continues to have mild febrile seizures (we believe they are connected to when she's teething/low-grade fever), which seem to complicate things.

We celebrate the smallest of milestones. She started helping to turn the pages during our book reading time this week. She gives us a "snuggle" every night before bed. A hint of understanding - there is definitely intelligence and even some wit and feistiness hidden in this tiny package of a girl. Every little glimmer of hope is huge.

Dr. Nabulsi believes that the seizures may actually be causing her developmental delays. He wants us to do a second EEG in Dallas (the first one was done in Lubbock when she was overnight at the hospital). He is convinced that something should have shown up on that. He also wants her to have an MRI to see what, if any, damage has been done to the brain.

If his observations are accurate, he wants her on a low-dose of anti-seizure medication for at least six months to help her body "normalize". He thinks the seizures are 'handicapping her' and not allowing her body to grow and develop like it should. Removing seizures from the equation for a while (coupled with intense therapy), he hopes will give her the boost she needs to catch up and get back on track. Although I'm not a fan of medicating my child on a daily basis... I'm also hopeful and quite relieved that this could be a fairly "easy" fix, if this is really what's causing all the problems.
Genetic testing has been set aside for now, though we will go that route if we rule out the seizure connection.

We covet your prayers, for logistics/travel for the tests, for God's provision, for our family as we juggle everything in order to care for Brielle the best way we know how. Therapy is starting to fill up our weeks, and the other appointments I'm sure will add to it. Pray for strength and endurance, and most of all, for our sweet daughter's healing and wholeness. We so desperately want to see her thrive and grow as God intended her to, whatever that looks like for her. We know He has a very special plan and purpose for her life and for us as a family.

Thank you for asking, for caring, for praying, for reminding us of His Word and promises. It's what holds us together when it gets tough.

Oh, my sweet Brielle.
I am standing on His promises. He is never late, He is ever-present, He is always faithful.

The name Brielle (derived from Gabriel) means "God is my might", or "God is my STRENGTH".
I am claiming strength, through the Lord, over her body and mind... in Jesus name.

our drummer boy

I just watched Judah's "Judah's First Year" video from his time in the NICU and his progress at home. It was the first time in a long while I had watched it, and, after crying like the blubbery hormonal mother I am, was humbled at how gracious our God has been to our son these 3.5 years he has been in our family! He went from a tiny one pound squishy micro-preemie, to a growing infant who had a lot of catching up to do, to the boy he is now that doesn't even show a hint of "preemie" in him, either by physical attributes, health, or development.

Judah is now a spunky, bright, energetic little guy who loves people, has a sweet and sensitive demeanor, and just a hint of mischief! One moment he turns to me at dinner and says "thank you for making dinner mommy" (oh melt my heart!), and the next moment he's flinging potatoes with his spoon. Love that kid so (drives me crazy too!).

One thing we noticed maybe about a year ago, is his growing musical inclinations. Well, inclination might be a grand understatement. It is in his blood. I am not calling him a prodigy child by any means, but this kid has rhythm. It's in his soul, he has to be tapping, beating, beat-boxing with his mouth, wiggling and dancing, or drumming on whatever he has in front of him (drums, table, floor, himself, other people), at all times. It is physically difficult for him to stop and sit still for more than a few moments!

I may be investing in ear plugs before long...

Here's a fun little video I took about a month ago that cracks me up. Most of the time, he either sings worship songs he hears on the radio, or makes up his own words and "ewok language" to sing along while drumming (like the last part of the video)... but this time he made up a legit song about monkeys. ;)

If you need interpretation: "We go to zoo, we see monkeys, and ooooh hah hah hah, and a diggabow!"

Thankful to Jesus that I'm this boys mother! :D

Slow but steady mini-milestones: Update on Brielle

Update on our sweet girl. We are now in full swing with all sorts of therapy every week, and though it seems progress is slow, Brielle continues to gain strength and endurance and we are celebrating "little" milestones along the way. All her therapists think she is smart, engaged, and responsive and they anticipate her to do very well and make big strides to improve.

Brielle is now 19 months and just as charming and delightful as always, getting a little more vocal and a LOT more personality!

We have seen two significant mini-milestones in the last month and we are thrilled to see her attempting new things and trying to be more independent and mobile.


Milestone #1:
She has been pulling into sitting independently (when she feels like it, maybe a few times a day). She surprised me a few weeks ago when she tried to do this by herself (we had been working on this in therapy but never tried without me initiating it for her). Seemingly small but a BIG deal for this little girl! In this video, this is the first day she did it, and she even performed for the camera! Impressive :)

Milestone #2:
I would define as "scootching", or what most people might define as dragging herself across the floor, haha! Not full-fledged crawling, and certainly not consistent, but still progress!
Now, this only happens when she is reallllyyy motivated by something. And what motivates her are usually two things: FOOD, or things she shouldn't have (brother's toys, paper, specks of whatever she finds on the floor, etc.). But mostly food. This girl LOVES her food, and can easily pack away more than her 3.5 year old brother eats on any given day... two hollow legs? Possibly two hollow arms as well? ;)

I have noticed her trying to pull her knees under more, so perhaps it won't be too long until she is using her legs more than arms to crawl in the near future.


Honorary mini-milestone: First itty bitty piggy tail! I've waited 19 months for this cute baldy to have enough hair! :D

We are stillllll waitingggggg for our developmental pediatrician and geneticist appointments. Doctors and paperwork can be as slow as molasses here in Texas sometimes. We hope these visits will happen before too much longer though.

Concerning her seizures, though we can never know for sure, we suspect that they may be connected to very low-grade fevers when she's teething. She was cutting a molar the weekend she went to the ER. Her fever must have been so low it didn't even appear she had one. Two weeks after, she cut the other molar and had several shorter and less-severe seizures over a 48 hour period. At that point a lightbulb went on as I made the connection. That gives us hope that perhaps at least it's not random and we may be able to expect it and possibly prevent it in the future. Keep praying for closure and answers there. We have a follow-up appointment with the neurologist in Lubbock on August 8th (our 6th wedding anniversary!).

Then, the following week, we head to North Carolina to see Jonathan's family and our new little nephew! Very much looking forward to that visit and time together, plus, this will be our first big airliner flight as a family!

Thank you for your continued prayers, they are certainly effective and appreciated!