The Recovery.

The Jetlag if you will.

The inevitable fallout that happens after spending a few weeks in the hospital.

Fallout for Kendall, fallout for me, fallout for all of us. We need to re-enter “normal life”, but normal life often involves an increase in the complexity or care of Kendall and her needs, which means there’s a lot less actual time in which to pretend like we are back to normal.

I don’t usually like to focus on the “hard” part of our lives. I hate feeling like i’m complaining, because in actuality, i try really hard not to.  I try to not get mired down in the “woe is me” or “woe is us” dumps.  I try to not play the comparison game, and I try to not ever take a minute of my “hard” life for granted because I know there are so many who would gladly give up nights of sleep and take the boxes of bliss back if it meant they got to hold their baby’s hand one more time. This is the reality of the life I live – knowing that as hard as life is many days, as many things as i WANT to whine and complain about – I know at the end of the day, that the fact that we are all still HERE and still alive is the biggest blessing of all. This is not a lesson I take lightly.

But even knowing that – sometimes it is still hard to walk in these shoes.
And today, for some reason, I just had a lot that I wanted to get off my chest.

It was hot today. A beautiful preview of summer to come.
And of course, Kendall couldn’t handle it.
And really, I hate overusing that term “she crashed”.  If I’m honest, I hate seeing other people use and abuse that term. I know that “crashes” look different for each person, and that what I’ve seen and witnessed in my child is probably far more than most people will ever have to watch their child endure during a “crash”. (I told you – i’m just getting it all out here today!) Anyways – while she didn’t have what I would consider a “crash”, she definitely had a horrible day.  Which led to her nurse having a bad day, and then making me feel like a horrible parent, and left me feeling helpless and angry and sad all at once. And maybe this was because I was already trying to deal with my own emotional fallout and so the timing of everything was just really crappy.

But i had a few times today where I just wanted to bury my head in my arms and just cry. For no good reason really – just blogrecovery1let the tears flow because it seemed like the right thing to do. (Have i ever mentioned how much i REALLY hate to cry?? It’s just not cute. It serves no purpose except making my eyes puffy and my sinuses swollen.)
I was sad to see Kendall wanting SO BADLY to just be a normal kid and go to school.

I mean, my gosh, today was her last day of KINDERGARTEN. I have a big first grader now.  She did it! She learned most of her letters and all of her numbers and she can count to 100 (almost – she gets stuck on 60 and kind of loops back around to 40’s and then throws a few teens back in but you can get her on track and she can do it!) and she knows her colors and most of her shapes and wow….she actually learned to SIT and to not yell at her teacher and to not throw markers at other kids and in spite of having TWO horrible blood infections, a broken wrist, and countless little viral things this year – she did it. I am SO so so proud of her. I am so glad our school doesn’t do the graduation thing for kindergarten because i would have just been a hot sobbing mess who needed the Neti pot for the next three days.

But my baby had to go in spite of the heat of the day which just literally zaps her of energy, and she is now carrying two pumps and two bags of fluids in her little backpack and she’s running antibiotics that she is technically allergic to and which makes her feel like absolute shi-caca. And yes it would be easier to just snap those pumps to an IV pole and make her wear her oxygen and make her sit in her chair which are all things she SHOULD be doing but you cannot tell this kid differently and even though i know I am the parent i just wanted her to have this one last day of “normal”. You know? Maybe you don’t. Maybe you don’t know the absolutely heartbreaking crossroads I battle at every day – between wanting to give Kendall the wings to fly and trying to tether her to me for safety.  I know she has challenges. I know she would likely have a smoother course if I made her be “that medical kid”. I’ve seen this happen a lot in the special needs community – kiddos tied to IV poles when a backpack will work just as well, becoming reliant on their chairs, spending so much time in the hospital because things aren’t just perfect. And while I don’t know each individual situation, I know mine. And I know Kendall’s. And I know I will daily strive to find that perfect balance between overmedicalizing her, and keeping her safe from her own stubborn will to do whatever she sets her mind to,  mito and other health issues be damned.
And this is what drains me.  Letting her fly while keeping her tethered. Taming a wild beautiful horse.
And while I am writing these thoughts, a song comes on that brings a smile to my face and reminds me to just breathe and take it day by day.

There’s more than one answer to these questions pointing me in a crooked line,

And the less I seek my source for some definitive, closer I am to fine.


So I guess that’s that.
I know it will be a tough summer with the heat. It always is. It is really fricking hard to keep her cooped up in the air con while she watches her sisters and i going out to do fun things.  And in another slap to the face, she asked if she could have a bigger bike. I told her she had kaylen’s old bike and it was her size. And then I realized – she cannot ride a regular bike. She does not have the balance or the coordination to sit on the small seat and balance herself and her backpack and make her legs propel the pedals forward and keep her eyes on the road ahead. She does really awesome walking around and looking mostly normal but do you know how hard that is for her? How much it wears her out to go from point A to point B? You probably don’t. Because she keeps it together in front of most people. And because she holds it together, I hold it together. But her sisters and I see the fallout. We deal with the fallout of a hurting Kendall, lashing out at us because her legs hurt and she’s exhausted (she really doesn’t lash out at daddy ever….)
And I was just sad that I realized we have to figure out a way to get her one of those special adaptive bikes. It will be all she can do right now – and it’s all she wants to do is ride bikes with her sisters on beautiful nights like tonight, when the humidity isn’t completely zapping her and she can tolerate being outside and looking normal and doing normal things.  I’m not trying to make this all seem like some huge whinefest. It is just the bare bones truth of how things are right now.


But we do hard things around here. And we figure out a way to keep on keepin on in spite of the hard things.
So we will get through this day, and the sun will rise again in the morning and things will look different. Maybe still hard, maybe a little better. But each day is new and always full of the opportunity for good things.

This is how we survive. This is how we recover. We roll with the punches, even though a few of them land right in the kisser, and a few of them are stinging blows.  (Should I put more song lyrics here? Because it fits so perfectly!!! I have used them before. They will soon be tattooed on my body even!)

But the fighter still remains.

So that’s how recovery is going.

Kendall is recovering. Her body is still weak from the infection and from the effects of the super strong antibiotics she is on every six hours, and they run for two hours each time. But her fighting spirit is strong as ever. As for me, I am getting there. No it wasn’t as emotionally taxing as some of them have been. And yet, how do you measure that? I feel like I hardly had time to sit and breathe after returning from Mexico, when my mother’s day was thrown into upheaval by an ambulance ride and then a 3 am drive up to milwaukee smacking myself so hard in the face to keep myself awake that I broke blood vessels in my cheeks.  And really things never calmed down from there. Two weeks of the chaos of our lives being thrown into a blender.  Coming home exhausted with an exhausted child and three other exhausted babies who just have to make it through the last few days of school. And then we can all sleep, said the mama.

So that’s all I wanted to get out tonight.  That some days are really rough and it doesn’t mean it will always be rough but it’s also not always as easy as I work so hard to make it look.  Home doesn’t always mean things are smooth sailing, but it means we are working on it.

If you’ve managed to read through this drivel this far, you rock. And I thank you for hanging in there with me through this stage of the journey. The sun will come out tomorrow, right? (I am totally busting out in my best Annie voice right now!)

Keep on Keepin On, party people.




Even Diana Prince Can’t do it all.

bonus points if you know who Diana Prince is without having to click this link. (It’s just to wikipedia i promise.)

*Insert loud dramatic sigh here*

you guys – this is hard. Really really really hard.

and the next time I think I’m Wonder Woman, I want someone to slap me really really really hard.

Because I’m not.

I’m exhausted and I ache all over and I’m shaky from either lack of real food or lack of sleep or just overall running on sheer adrenaline for…like a month.

I know you are all SO HAPPY for us to be home, and believe me, I am equally as happy that we made it home. But like I have referenced before, getting home is usually the start of the real battle. Discharging from the ICU is not a preferred course of action for a good reason. Most notably that I am only one person, and in the ICU we at least have two persons – one for the day and one for the night. Because running medications on 5 different Iv pumps overnight requires the ability to be awake and cognizant.

I wish I had a bunch of cute pictures of how happy she was to be in her own room, to see her sisters and our neighbor friends who came to say hi. But I don’t. Because that only lasted for about 20 minutes before the stress of the long drive, of having to be upright for that long, of all the excitement after laying mostly still for 3 weeks and still being pretty gosh darn  sick – all of that hit at once. And our courier from the pharmacy was not here with the magical medications we needed to bring her relief. And my older three kids were excitedly telling me everything about their last few days and i wanted to hear them, i wanted to sit and hold them endlessly and just soak them all in again, but I couldn’t. I had a screaming baby and medical supplies literally all over and about four loads of laundry dumped by the washing machine and NO MEDS to help stop the pained screaming and Ben left for his business trip in the middle of this chaos and it just made me want to curl up in a corner sucking my thumb and rocking myself to sleep.

But I couldn’t do that because children needed showers and help with homework and mommy time and Kendall needed all new IV lines set up for when the medications did come and she was too cold and too hot and wanted ice packs here and blankets there and this movie on no that movie on and then her nurse accidentally threw out a major part to making her oxygen concentrator work last week so we were trying to jerry-rig that and then the medications FINALLY CAME and we have pumps and IV lines all over the place because there isn’t enough room on her IV pole for all the pumps and all the bags of medicines so we are taping things to walls and using lamps as makeshift IV poles and we finally finally finally got Kendall some relief at 9pm and I got a few minutes of snuggles in with the big girls and then the nurse and I had to go over all of the new medications and all the new paperwork that needs to be filled out. So I got my nice hot pressurized shower at about 11:15 and then had to stay up to run meds at midnight.

Got to see the beautiful full moon as it started it’s arc behind Venus. It was ALIVE last night did you see it?? I just sat and stared and tried to soak up the quiet amazing beauty of that glowing moon and sat in awe at a God who could put on such a fabulous show in the middle of the dark night. And was reminded that that is when He shines the best…when things seem the hardest, the darkest…that’s when you know you are truly held.
So I set my alarms for 2 am and 4 am and 5 am to run Kendall’s other meds and I got in bed for a couple hour nap and I got up to reset her heartrate alarms and to untangle lines that were causing occlusion alarms and to run the right meds on the right pumps hanging off lamps and taped to dressers and I prayed that my hands would be guided and that I would not make any mistakes in my overly sleep-deprived state. (Did I mention that the last night in the hospital I only slept from 5:45 am til 7:15 am because we were working all night to keep Kendall’s pain under control???)

So here we are this morning and I am definitely feeling FAR less than wonder woman-ish and I am trying to organize the chaos of paperwork and new medications and charts for the nurses in the few hours I have before her next set of medications needs to run. But we survived the first night. That is huge. Today is another day and we can hope that maybe today is the day her pain lessens and i can run a few less meds tonight. I got the big girls on the bus and i shakily made my way back home with a list on my mind of all the things I needed to do and I looked up and there was the most beautiful creature I have ever seen in my life – the Dunkin Donut Fairy with a large coffee and a pumpkin muffin and I just hugged her and tried to stay upright because I just NEEDED that…..I needed it in a way beyond just craving sugar and caffeine I just needed to know that the strength I needed was going to come minute by minute and hour by hour but when i needed it the most it was going to come. (thank you miss B – you are truly beautiful inside and out – even without coffee in your hand for me! <3 )

I do not know what possessed me to think I could replace our fabulous nurses and amazing care from West5 at home by myself. I honestly have no idea. I realize now that I cannot and will not ever be able to do what those people do for my daughter without MAJOR major headaches and issues. I cannot thank them enough for ALL of their care and love and concern for my daughter. The ones who get to work for shift assignments and fight over who gets Kendall that day or night, the ones who lose the fight and still pop in to say hi to us, the ones who win the fight and provide outstanding care day after day, night after night. the doctors, the techs, the HUC’s, the discharge planners who love my last minute requests…..You guys are our home away from home and oh how I was torn last night as I wanted to plop on the floor and cry because I couldn’t make her pain go away and she was doing her fever thing again and I just wanted to be home here and i wanted to be home there and i just wanted this all to be not my real life right at that moment. but I know any one of you up there would have told me to get off the floor and stop crying and do what needed to be done for kendall so I did.

And we will get through.

your prayers, all of you, near and far – they will get us through. The food you are signing up to bring us, the cards you are sending, the love you put into my inbox and my phone via texts and the hugs I get when I see you in the store – these are how we will survive. how I will survive. And If I survive, we’re all surviving.

Minute by minute, hour by hour, we are surviving.
now I’m going to do my best to channel my inner Diana Prince, original Warrior Princess, and get shit stuff done around here.

See you on the flip side.

T-crest out.

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