This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates.

It was one of those days… Definitely nothing compared to a day in the PICU, but just a normal rough day as a rare-disease mom.

Oh how I pray that one day a doctor will say, “Hey mom, I know she is rare but guess what, we discovered a cure. There is a treatment and it will make her stronger, fix her random lab values and finicky organs, give all of you a better quality of living as well as a give you a break from the abnormal mental stress you go through on a daily basis.”

My kid was awake for maybe a total of 5 hours today. I worried my way through most of the hours she slept. I talked to three medical professionals about lab results and medicine options. I did more medical troubleshooting than any mom ever should. I questioned her symptoms. I questioned her path. I questioned myself. I questioned my future. I questioned if I should just stop the questioning and simply say “it is what it is… stop fighting this.”

I feel tired. I feel like I am a bugging her doctors. I feel like they must be tired of me. I feel like there is SOMETHING that can help make her feel better. I feel like I need answers. I feel like I keep repeating the same thing in hopes that someone will have another brilliant idea or a solid direction for her care. I feel like some of these decisions are too big for a parent to make, some of these tasks are too big for a parent to manage.

She is rare.

There is no cure for mito.

We can only treat the symptoms.

But even treating symptoms like vomiting and muscle weakness seems impossible.

I fiercely love my kid but some days I just want normal. Whatever that is.

Icing on today’s cake, she has two spots on ringworm, again, on her face. And we have family pictures on Monday. Oy.

If you don’t laugh you cry. Tonight, I may sip some wine and do the latter.

I don’t write all of this to complain. I write to get things out of my head and to give everyone who follows our story and prays for our family, a little window into the life of parenting children who are rare, who have special needs and who battle life threatening conditions.

Oh, by the way, before I could even get this posted, she projectile vomited all over herself, me, Minnie Mouse, the blankets and the couch. This is mito.

With a glass half empty of wine (only because I already drank the other half), Lorelei’s mommy…

This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates.

I found myself sorting mail last night. Oddly, there was more for Lorelei than for the rest of the family. And these were not hospital letters or appointment confirmations. They were greeting cards. As I opened them I found myself crying tears of joy along side the tears of sadness… realizing that half these cards were “get well”, “we are thinking about ya” cards while the other half were birthday cards. How incredibly bittersweet is it to get “you survived, wahoo!” cards mixed with Happy 2nd Birthday cards?

Don’t get me wrong, I am thankful and I fully understand how much of a miracle child she is. I love that she is receiving so much love! But this week will always be an emotional week for me, with or without January’s events. In the midst of the envelopes, it was simply one of those weaker moments when I found myself sobbing “it’s just not fair!!!”

It’s not fair that my kid stopped breathing multiple times last month. It is not fair she caught the flu. It’s not fair that I am constantly worrying. It’s not fair that we canceled her birthday party because of germs. It’s not fair that she has more doctor friends than two year old friends. It’s not fair that, when she turns two, she is now officially in that 2-5 year range when research says most of these kids have passed away. It’s not fair that I am weaning my child off narcotics, with narcotics, on her second birthday. It’s not fair that my almost 2 year old cannot sit up, cannot walk, cannot talk, cannot eat by mouth.

Then there’s always the other side. Oh that hopeful, faithful and positive other side. This is the side that forces me to stop looking at our setbacks as setbacks. But instead, forces me to wake up every morning and thank God for another day with Lorelei. Because she almost died in my arms in January. And she has circled the drain a couple more times after that. So the “other side” always counters back, in it’s loud and unshakably confident voice: she started breathing again and she kept on fighting. Her tiny, medically fragile body beat the same flu that has killed healthy adults this season. You worry and you are fearful because you are experiencing a form of parenting that many will never have the opportunity to experience. You can reschedule a party for whenever you want - you manage Lorelei’s calendar anyway don’t ya?! She is blessed to have friends, whether they are doctors or toddlers, who sincerely care so much about her, and her parents. She IS turning two, she made it to TWO! She survived intubation - and she just needs more time to recover and a longer time to wean. And the use of drugs has fallen to the perfect timing with two year molar teething! She is a rockstar at laying on her back, and for right now, she is quite happy and content about it. She is also much stronger than one would suspect her to be after the wicked start of the year, miraculously almost back to where she was in December!

So you will find me, at any given moment, somewhere between those two sides. The traumatized mom and the hopeful mom. We weren’t promised to have tomorrow’s birthday. It is a gift. A gift that words cannot express how grateful I am to have…

All that to explain why I have been a hot emotional mess all day today, and will be tomorrow too. Next time you see a special needs mom, try to know and respect her roller coaster. But don’t feel sorry for her… just be sure to give her a high five, a hug, or a bottle of wine. This life isn’t for the faint of heart. It’s for the gritty, faithful, determined, takes-exhaustion-to-an-all-new-level woman who wants, more than anything, to make her child/children happy despite their obstacles.

PS. For those who have sent cards and gifts of all sorts!! Thank you. Thank you so incredibly much for thinking of Lorelei and our family. It will take time but I will try to get back to all of you. And we will try to pay it forward to others who are going through their own crazy times! 💚

This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. There were a few important updates on her Facebook page between this blog post and the previous one… like the one when she was extubated!!

Yesterday Lorelei slept the entire day. Around 430 I asked the nurse to check her labs (wasn’t supposed to be due for 5ish more hours) to make sure there wasn’t a crazy reason she was sleeping. When the labs came back consistent with her previous, I decided to finally just force her to wake her up. (Which is something I never do but this kid had slept almost 24 hours, through multiple respiratory therapies and exams. I needed to see how she would behave. I needed to see more than her eyes reacting when I shine a light in them.)

For about 15 minutes Lorelei was weak, but so incredibly happy and so much more like her quirky self. I got to hold my baby for the first real time (not counting when she was intubated and completely drugged) since that time I thought it would be the last time I held her. Talk about feeling ALL the feels.

I think she enjoyed those 15 minutes as much as I did. But then she passed out, hard core. Her body is weak. Much weaker than her previously low toned body had been. So hopefully more sleep will help. Assuming her mitochondria continue to play along, we appear to be going in the right direction. Thank you Jesus.

I left the hospital for a bit yesterday when my mom drug me to dinner at Jason’s Deli. As I sat at my table, I listened to people around the restaurant cough and hack their way through their meals. One guy was sitting at the table next to the salad bar… he would cough every few minutes. Every time I cringed. I’ve said it once and I will say it again: if you are sick, stay home. Sure, I don’t know Salad Bar Man’s situation… maybe he isn’t contagious, maybe he has a chronic coughing issue, maybe he has a rare underlying condition that causes excessive allergies and secretions. But if you’re sick or recently have been sick, JUST.STAY.HOME. Order food in (or amazon prime whatever it is that has you aimlessly wandering around Target) and keep your germs to yourself. Catching the common cold or even this dreaded flu may not be a big deal to most, but it is life or death for others.

I have lived in the PICU for the last 17 days. (And I haven’t been home in 25 days because of work and the holidays.) My mom dropped me back off at the hospital last night and it was the weirdest feeling. I walked past an overflowing ER of very sick, coughing kids. I walked past a new admission, knowing that this is “the worst day ever” for those parents. I walked past several PICU rooms where I know of families who lost their children in the last 17 days alone. When I rounded the corner, I was thrilled to see my kid, my husband and one of our favorite nurses in our not-so-cozy room. I was back in our safe little hospital room. The room that I almost lost my baby in. The room that I was generously gifted a few more precious smiles from Lorelei in yesterday.

We have been holding off to see if we can get medical transport home… and quite frankly I don’t think it will be happening. I spent most of yesterday trying to figure out our options. But her “15 minutes of happy” yesterday make me more confident in taking the 12 hour drive. After we flag every children’s hospital up the east coast that is…

So stay tuned y’all. God is good and this little girl isn’t done writing her story.

This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates.

I thought NICU life was hard. I am honestly thinking that PICU life has it beat. Today was yet another roller coaster after a tough night. We lost another PICU neighbor and Lorelei’s vitals were all over the place. Early in the morning I was startled awake by a resident telling me that Lorelei’s heart rate was dropping and her blood pressure was too high. We sat on pins and needles all day. She would rebound and then labs would set us back again.

Today, in the midst of the crazy, I ran into the attending doctor we had last week. Earlier that morning she had made me promise I would leave the hospital at some point, which of course I did not do. She looked at me and said, quite matter-of-factly, “Wanna go for a walk?” Surprised, I said sure, assuming she meant around the hospital. Next thing I know we are getting in her car and driving ten minutes from the hospital, to walk around a quiet Floridian lake, surrounded by beautiful trees. Away from the hospital. Away from the crazy.

From our first encounter, I have respected her honesty. On the day that Lorelei crashed and had to be intubated I was looking at her as I sobbed, while making life and death decisions. In that moment she was to-the-point, but empathized as one mommy to another. Today she was not our doctor, she was another person, in a town where I have no people, who got me away. Who helped me clear my head. And that right there is the definition of compassion.

Assuming we have an uneventful night, Lorelei’s Orlando team has a plan in place to drop the sedation meds tomorrow at 6AM and extubate at 8AM. Please pray for our little warrior, that her body can handle this huge change and that it seamlessly picks up when the machines are no longer helping her. Hopefully a week of intubation was enough for her buckets of reserve energy to refill and her mitochondria had the chance to do a little R&R (since the rest of us missed out on our family’s vacay!)

Pray for the nurses, doctors, therapists, and everyone else involved in what we are hoping is an uneventful morning. And pray for us, Lorelei’s mommy, daddy, grandma, and all our family at home… because while I know God has a plan for us and I know He is side by side with us in this storm, I’m still an anxious mommy who simply wants more than anything, to see her little girl laugh again.

(Also many thanks to the nursing staff who is beyond amazing. I want to take them all home with me!!! They don’t do primary nurses here but have settled in with a few “primaries” for us. And a couple nurses went above and beyond to help us print 10 picture of Lorelei to hang around the room!)

With hope, Lorelei’s mommy,