Real, Raw, Happy, Sad

Alright, well, we were not expecting a hospital admission. Not going to lie, we feel like we jinxed ourselves.

The last few months, when people are asking how we have been, or how we are doing, Joe and I were hesitant to say “good” or “ok” because a) we’re just not use to it and b) we’re honestly scared of jinxing ourselves! We are NOT used to calm…as clearly, the last 2 years have been anything but. But the girls were good, we were all good! We had a few worries with Lillian and some ENT issues, but that has temporarily been put on the backburner and all was well.

Quinn spiked a fever late Monday morning, and just seemed out of it. With the girl’s kidney condition, they generally cannot take Motrin, and this time, Tylenol just wasn’t cutting it. We brought her to her pediatrician, and she was negative for flu and covid, which was great, but our gut just said something was happening. For those that know Quinn, she is ALWAYS happy. Monday night and Tuesday morning, she didn’t want to be looked at, touched, played with… she wanted nothing to do with anyone. We couldn’t console her, she wouldn’t eat, she wouldn’t drink, and then she started puking and was unable to keep her medications down, including her hypertensives. It was time for the ER.

Joe and Quinn spent hours in the ER Tuesday, and honestly, everyone was leaning towards viral. The last thing they were checking was her urine. Sure enough- all signs pointed to a UTI. Helloooooo hospital admission number 7.

Slowly, seems like very slowly, but surely, our girl’s spunk is peaking through. She was in fact positive for a UTI, but the ultrasound did not show that the infection had reached her kidneys, and her heart is looking beautiful. Right now, it is a matter of battling these fevers, getting her fluid intake back to normal, and fighting this infection, all of which are doable.

So, why am I writing? Honestly, my heart is heavy and it’s an amazing outlet for me, so why not.

Maybe it’s the “slowness” of this hospital stay- we have answers, we have a gameplan, everything will be ok… but this one hurts. They all hurt, don’t get me wrong. But it’s almost one of those we were on cloud 9 type feelings and then our legs got pulled out from under us like Kidney Disease was saying heeeeey, remember me! I keep telling Joe, we should be used to this, I should be used to this. And to a degree, I am. I know that during the week, it’s best to go straight to level 5 or 6 for parking. I know the best times to go to Starbucks. I can walk the halls in my sleep, and there are faaaar too many hospital staff members that know us. In those aspects, I am used to it.

My heart will never be used to this. It has been nearly 10 years since I first learned of ARPKD, 10 years of being a kidney mom. That is a long time! I am constantly asked if I am in the medical field… no, I’m a mom to medical miracles. With that badge, comes trauma.

Here’s the real and the raw. I have been told “you don’t have trauma, that’s for soldiers,” or “get over it” or “move on.” Okay, well, if it were that easy, trust me, it would be done. From my pregnancy and Lillian’s diagnosis, to NICU, to every hospital admission, to transplant, to warrior number 2, to heart failure, to watching my child almost die not once, not twice, but 5 times… I am relatively certain that one will never “get over” that. Now, that’s not to say I am not stronger than I was 10 years ago, or 16 months ago, or 3 days ago. And let me remind you, this is a family affair. We ALL have trauma; we go through this life TOGETHER.

But in our moments of chaos when you ask me “how are you doing” and I respond with “I’m okay” or “hanging in there”… inside I am probably holding my breath. Inside, I am using coping skills, focusing on the facts and the positives, and reminding myself of my family’s strength. And, when chaos hits our lives, for example Quinn is back in the hospital, it’s a team effort. It’s deep breathing with Lillian, its holding hands tightly when emotions hit, its picking up slack in one area while the other person levels it out in the next-it is all in.

We have our routine, and it works for us. With Lillian, Joe and I both always stayed at the hospital 24-7. I remember her doctors literally forcing us out of the room at one point to simply take a walk in the hospital because we hadn’t left her room in days. With Quinn, again, real honesty here, Joe takes the night shift and generally doesn’t leave the hospital. Since watching so many of her cardiac events, my heart just can’t handle it and I literally do not sleep if I stay. And Joe, in addition to never having seen her cardiac events, has that lovely man superpower of being able to sleep anywhere and through anything, so it actually works out okay. It is exhausting though, for both of us. For me, my goal is maintaining normal as much as a humanly can for Lillian-getting her ready for school, dropping her off, heading straight to the hospital, staying for doctor’s rounds, leaving for pick up, carline, homework, dinner/dance/Catholic PREP… depending on the day and extracurricular, back up to the hospital, back home and bedtime. My head spins a thousand miles an hour, and yet when it hits the pillow, it slows down and plays on repeat sometimes.

Please do not take this as a rant or a post of being ungrateful. I am beyond grateful to be the mother to Quinn and Lillian, and I feel like God knew exactly what He was doing to have Joe and I in this journey together. I just want it known, for the sake of other medically complexed mama’s and daddy’s out there, that it is simply okay to not be okay all of the time. We put a smile on our face day in and day out, and we wouldn’t have it any other way. We hold back tears, we stand firm, we fight, we advocate, we support- but we also hurt, and cry, we bruise and get beaten time after time. We get scared of comfortable, we put guards up, we avoid triggers, we know pain and we have countless battle scars.

We are exhausted, we are running on fumes and most likely 7 shots of espresso reheated one too many times. And guess what, tomorrow, for the immense love and pride we have in our children that fight harder than anyone, we will do it again, with that same smile.

It is okay to hurt. It is okay to have trauma. It is okay to not be okay. As Joe said, if this felt normal then we would have a problem. So tonight, as my 9 year old kicks me in her sleep, I will replay the day, but I will also tell myself it is okay, we are all, okay.

Silly faces at bedtime FaceTime

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