This was a post I started in June 2019… and had a sync issue writing it on different devices, and then never published it. I can’t believe its now been over two and a half years. The two year mark was tough though. D’s broken femur was rough of course, but R’s surgery brought it’s own unique challenges…
Last weekend, my sister put a song on she’d already played for the kids and they started all singing it. She said it reminded her of me, but I really couldn’t understand the lyrics with all three of them mumbling along.
So when we declared movie night, I ran up for a shower in the middle of Madagascar 2. I listened to it in the shower and cried my eyes out. Shower and car bawling has been on the rise again lately. I’m not sorry to admit it. I’m only starting to feel like myself again. For the last 6 months, I’ve been surviving. Surviving with the fierce determination of a mother. The broken leg, the secondary trauma, the anxiety I felt leading up to finally having my middle child – my passionate, decisive, middle child – have a surgery I was afraid of since her second week of life, that I spoke to and cried to Tim about, getting the surgery scheduled for the day after her father’s second Deathaversary, scheduling all the support needed to be with her for it / through it, bringing her up to Hopkins for it, being there for it, after it… Possibly the worst of it was that post op was exactly as bad as I had imagined it would be. Beautifully, our friend Dawn (I should say Tim’s friend but I will say our friend) was there with me and I remember saying to her “this is exactly what I was expecting, honestly, but that doesn’t make it easier.”
The longer story about Rose’s surgery starts when I was pregnant with A… at 36 weeks, they declared her with “hydronephrosis.” Unfortunately, our OB/GYN told us that “it could be nothing, and go away before she’s born, all the way to a possible sign of downs syndrome, or many things in between… but don’t worry, very unlikely to be downs based on your previous testing.” Wait.. what?!? Tim and I were distraught. At that time, I was blogging about my pregnancy and Tim asked me not to include this while we processed it. He was fretting that with kidney issues, she wouldn’t be able to play sports. (Because you know – of course he was!) I was just fretting because that’s what I do – and also isn’t that what first time moms do? They put A on an antibiotic the day she was born, and lots of early testing I remember fairly well considering the postpartum hormones. Mostly I remember feeling my first real mama bear instincts… when they put an IV needle in her tiny hand vein and all I could think was let it be me instead – I don’t want her to feel any pain! Then when they gave her a sugar water pacifier so she wouldn’t mind the catheter and it worked like a charm I thought: this is amazing!!! Where do I get this miracle stuff? After all the testing, A didn’t have reflux. She had one kidney that drained slower than the other. They kept her on the antibiotics through 7 months, monitored periodically, then at 18 months they told us we were done… except RIGHT at that time, they saw it on my last ultrasound with R. Her hydronephrosis measured smaller (by .1mm) on my ultrasound than A’s did so I hoped hers would be even easier. She also started on antibiotics on day 1 of birth… and then we went in for her first VCUG (voiding cystourethrogram) at 2 weeks of life just like we did with A… A VCUG helps diagnose vesicoureteral reflux – a condition in which urine flows the wrong way, from the bladder back up to the kidneys. When we saw the images on the screen, it was obvious to us both that she had reflux… and then they told us: grade 4 or 5. Basically, as bad as it gets.
Here is a photo of Tim right before R’s first VCUG:
There I was, post partum with a two week old and the tears just streamed down my face. I knew this was not the end of the world, but I was so sad. It was Tim’s turn to be strong. He held me and soothed me, and held R so I could pull myself together. And he put his big arms around us both while I held her, my sweet baby girl who I could not believe was anything short of perfection.
R spent 3 years on antibiotics which I didn’t love. Then at 3 years old, fully potty trained they let her go off to see what would happen. What happened was we rushed her to the hospital or Dr’s office many times with spiked fevers close to 105 degreesF. She always vomitted when her fever would spike. They always wanted a urine sample which is HARD with a stubborn 3 year old. I was relieved she got one right before we went to London so we had antibiotics for London so we couldn’t get it WHILE in London… then we returned and she and I spent New Year’s day at the hospital while I was still nursing D. So… when the pediatric urologist suggested returning to the antibiotics I said ok! Back to daily antibiotics… 3 months passed, she turned 4. Another month passed and our whole world turned upside down. On the six month anniversary of Tim’s death I found myself with R at the same ER I had taken her father to, in the middle of the night. I wrote about this in The half year mark. After that, at the pediatrician follow up, was when I was encouraged to seek a second pediatric urology opinion and referred to see Dr. Gearhart at Johns Hopkins. That in itself was interesting, from being asked to come back to discuss the surgery with dad (after it was laid out pretty plainly that it was necessary), explaining, the pity, the “you will find someone else” along with a story that included other men not being threatened because another man won’t be coming around… to scheduling the surgery for August 2018, only to have to reschedule it for June 2019.
It was scheduled for June 12, 2019. I took off Tuesday through Friday immediately. Tuesday was the second deathaversary, and the day before we had to be checking into Hopkins early for the surgery. I did everything with conviction. I did everything with the fierce determination of a mother. I had great support at home from my au pair and my father-in-law for the other kids. And yet.. it took everything out of me.
In October, R and I went back for yet another VCUG (easily her 5th or 6th). We went to the Fairfax hospital. The hospital where her father died, but also where he stood in the penguin radiology apron with enthusiasm. While we were there, I saw that penguin radiology apron, and I told her how Daddy wore it for her very first one. For the very first time, there was no sign of reflux on the VCUG. This time, I could have cried from the relief.
As I move more fully into the third year, my goal is to see that rainbow over my head that my sister sees… Here is that song she said reminded her of me:
When it rain it pours but you didn’t even notice
It ain’t rainin’ anymore, it’s hard to breathe when all we know is
The struggle of staying above, the rising water line
Well the sky is finally open, the rain and wind stopped blowin’
But you’re stuck out in the same old storm again
You hold tight to your umbrella, darlin’ I’m just tryin’ to tell ya
That there’s always been a rainbow hangin’ over your head
If you could see what I see, you’d be blinded by the colors
Yellow, red and orange and green, and at least a million others
So tie up your bow, take off your coat and take a look around
‘Cause the sky is finally open, the rain and wind stopped blown’
But you’re stuck out in the same old storm again
You hold tight to your umbrella, darlin’ I’m just tryin’ to tell ya
That there’s always been a rainbow hangin’ over your head….
– Songwriters: Shane L McAnally / Kacey Lee Musgraves / Natalie Hemby
