Amanda’s Story

Site created on March 9, 2020

At the beginning of 2020, we found out we were expecting. Unfortunately, a month after we found out we were expecting we were given devastating news. Our baby was diagnosed with anencephaly - a life-limiting diagnosis. A few weeks later, we discover our baby also has Trisomy 18. Another rare, life-limiting diagnosis. It’s been quite a year so far, to say the least. This page is meant to keep you all updated as things progress. Thank you for joining us in our journey ❤️

Newest Update

Journal entry by Amanda Baartman

Life.

It’s beautiful. 
Even when it’s not.
And when it’s not, you just need to hold still and give it to God, who makes everything beautiful in its time. 

We have been so overjoyed these last few weeks. We are blessed to introduce Judah and Josiah’s baby brother - Bennett Brooks Baartman. Our rainbow baby. Born 2/3/23, a healthy 8 lbs 15 oz and every bit perfect. Josiah did a great job of hand picking Bennett to join our family!

It was definitely a roller coaster of emotions through the pregnancy, and a very emotional delivery. Healthy the whole way through (PTL!) and labor was easy, delivery was hard but we got the job done and a flood of tears followed when the cries of this precious child hit our ears. What a whirlwind. I’d never felt so much relief in my entire life when this slippery little body was placed upon my chest. I did not think my heart could swell up any more that day…

Until Judah came to the hospital.

It may have been even more wonderful than Bennett’s actual arrival. Judah, having been through the journey with Josiah, finally got to experience a happy pregnancy. The excitement of what was to come. Everyday before getting on the bus to go to school, he would kiss my belly and say “bye baby, have a good day! Love you! See you after school!” And every night, “I love you baby, sleep good, see you tomorrow!” It broke my back to bend over for the bed time one, but it was worth it. When we were in the hospital, my parents had Judah duty. We sent them a text to let them know it was time to come meet Bennett. Judah had to hop in the shower to “wash off school germs” and my dad was outside of the bathroom when he heard Judah in the shower talking out loud, unaware that anyone was around and listening to him. He said Judah excitedly was saying, “Josiah!! You’re a big brother now!!! We are big brothers!!!” Oh man. Even putting that here makes my eyes water. My dad has gotten soft in his age and so of course that made him tear up when he heard it. It just makes your heart explode because you feel all of the love that he still has for Josiah and now his new little brother. 

The pure JOY in that boy’s face when he met his brothers for the first time… I’ll just never forget it.  His reaction meeting each of them was almost identical- didn’t have much of a different reaction meeting Josiah as he did meeting Bennett. He wasn’t sad or afraid of Josiah, knowing that he wasn’t alive (and at 5 years old) but just SO happy to meet him. But this is time was just special as the hospital stay went on. He was super excited that Bennett got to come home with us. I truly think that’s when it became real to him. 

He knows how special it is to be able to be a big brother and he is not taking his role for granted! He has become a great helper. The most affectionate 8 year old boy you’ll ever meet. So much that we had to set rules of not trying to kiss Bennett so much and to not stick his head in the play mat gym and car seat and swing when Bennett is in them… lol. He listens pretty well to these rules, but it is soooo hard for him to resist! I pray that he takes this love he has for his brother and realizes that God loves him the same way, just way, way more!! 

I believe Bennett heard his brother every time Judah talked to him when I was pregnant, because now when we set them together Bennett is usually calm and will surprisingly stay calm (usually!) when Judah has him. So calm, that often times Judah’s arms are his favorite place to fill his diaper!! In which Judah is not ever impressed with. But I know Judah is just as thankful as we are that we get to experience these moments together. Moments we thought were taken away from us forever, are now happening right before our eyes.

It’s been such a beautiful journey. I honestly was never expecting to be in the position we are now, and I’m loving it and soaking up every moment. But I had to sit back and think, why?? Not as an ungrateful why, because I am so grateful for everything! Just curious as to why now, God? Why not earlier with Josiah? Why now, when I was oddly considered a dinosaur in the OBGYN world (35 they mark your file as GMA - geriatric maternal age 🤣). I know His timing is perfect. I won’t fully understand until I ask him. But I like to think this is at least one reason why…

Exactly 2 weeks before Bennett’s due date, we get a call from my MIL that Brian’s dad was rushed to the ER after a strange episode that left him on the ground and in a manic state. We were all very shocked by this and were expecting a possible stroke or seizure of some sort, which he has never had before. After having tests done, they determined he has renal cancer that had metastasized to his brain. None of which we knew of prior to this. So this was a major shock to our family. Especially Brian, the wave of polar opposite emotions in such a short amount of time. And once again for the 3rd time, experiencing a possible tragedy that tries to cloud the happiness that comes with new life.  You would think that maybe we would have caught a break this time around, but God had other plans. 

My father in law was taken to Iowa City and Brian spent the first entire week with him and his mom over there. He had to come home the next week because he needed to get ready for baby, and thankfully by that time there was a game plan for radiation treatments that they started while his dad was there. So back to my thought as to why Bennett was born now is that My FIL wasn’t doing so well, and Bennett gave him that little extra push to keep fighting. To make it through the extra hard days. My FIL was not going to go anywhere until he was able to meet this new grand baby. And it worked - because after over 2 weeks in the hospital and 10 rounds of radiation treatments, Gary got to meet Bennett. It wasn’t how he planned to meet him, in the lobby of the hotel they had to get in their way back home to NW Iowa, but it was perfect. I’ve never seen Gary get emotional or even close to it, and the moment he got to hold Bennett, he wept. The circle of life hit him like a bag a bricks upside the head. And he just wept. It was beautiful. And I’ve NEVERRRRR seen this man smile for a photo before, but the smile on his face in the photos with Bennett was the biggest and best smile he’s ever flashed for a camera (that I’ve seen anyway!). It was just a different kind of smile. 

So we are grateful, and thankful for the timing of everything once again. We couldn’t make anything more perfect if we tried. God knows what he is doing, folks. If you don’t believe it,  cry out to Him and just wait. He hears you. We hope and pray that our journey is one that can help you feel hopeful, that you can learn to trust in our amazing God during your times of difficulty and hopelessness. It may not make sense to you when you want it to, but once it does. It will hit you like a bag of bricks upside the head (hah..) and you’ll know. God’s there and he is working when we don’t see it, don’t feel it or know it. He never stops working! 


Gratitude - I AM THEY


All my words fall short, I got nothing new
How could I express all my gratitude?
I could sing these songs as I often do
But every song must end and You never do

So I throw up my hands
And praise You again and again
'Cause all that I have is a hallelujah, hallelujah
I know it’s not much
But I've nothing else fit for a King
Except for a heart singing hallelujah, hallelujah

I've got one response, I’ve got just one move
With my arm stretched wide, I will worship You

So I throw up my hands
And praise You again and again
'Cause all that I have is a hallelujah, hallelujah
I know it's not much
But I've nothing else fit for a King
Excеpt for a heart singing hallelujah, hallelujah

So comе on, my soul
Don't you get shy on me
Lift up your song
'Cause you've got a lion inside of those lungs
Get up and praise the Lord
Come on, my soul
Don't you get shy on me
Lift up your song
’Cause you’ve got a lion inside of those lungs
Get up and praise the Lord
Come on, my soul
Don't you get shy on me
Lift up your song
’Cause you've got a lion inside of those lungs
Get up and praise the Lord

So I throw up my hands
Praise You again and again
'Cause all that I have is a hallelujah, hallelujah
I know it's not much
But I’ve nothing else fit for a King
Except for a heart singing hallelujah, hallelujah
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