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.

Hard.

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.

Love,

T.

 

To the baby in the room across the hall.

Dear baby~

I don’t know your name.

I don’t know why you were here in the PICU, I don’t know how long you had been here.

I know only that today you became an angel.

Your room is dark now. Your beautiful pictures and the decorations on your door are gone now.

I hope you are running and laughing and playing up in heaven tonight, free of tubes and wires and beeps and pokes and all the things that you were hooked up to in your tiny crib.

Yesterday morning you started having troubles. Your room was a hive of activity all morning and that code light, that damn red code light was lit up above your door as doctors and x-ray machines and surgical teams moved effficiently in and out. My eye caught that of your nurse and tears welled up in my eyes. Because she is our nurse too. And I knew that look on her face. I knew the look on your momma’s face too, as she leaned against the nurses desk watching all the activity and feeling helpless to it all. And all I could do was pray…

They eventually stabilized you. When I left to go home, you seemed stable. I knew our nurse/your nurse was busy in your room doing the amazing work only she can do to keep very chaotic little bodies as stable as possible. Last night when she got off shift she texted me that it had been a rough day, and that she missed coming in to our room for her loves. I texted her back that it was ok – we sent her our love all day, and I knew she was right where she needed to be all day – taking care of YOU.  And I know she gave it her all. I know she poured every last ounce of anything she had left into you all day. And when she left, and she needed to, she let all of those emotions about how hard that day was flow as tears.

I hope you are able to look down now and see her and know what an amazing person you had taking care of you. All of them here are amazing. I saw your beautiful pictures – you were a smiling happy baby – surely you knew the love they gave you. I hope you watch over all of them as they continue having hard days, and continue coming in and doing what they do with smiles on their faces, even if those smiles are hiding tears sometimes.

And today I came back and realized your room was clean.

You were gone.

I tried to tell myself maybe you just got transferred somewhere. Maybe you had to go down to the CICU or maybe they flew you to Chicago.  Sure they did.

But see, I know that’s not the reality of life in the ICU.

I know what that code light means.

And I don’t know why today was your time, and two years ago when my daughter was in the room right next to yours, and her code light was going off and going off and going off for so many long hours…..why it wasn’t her time. I don’t understand why some babies make it, and some babies don’t.

I have had to come to terms with the fact that here in the ICU, as much as it feels like a weird microcosm of “home” sometimes….it also feels like the hardest place in the world to “live”. Because while many miracles and successes happen here….just as often there isn’t a happy ending.

But what I want to tell you is that you earning your angel wings was not in vain.

You made an impact with your little life.

You made an impact on me. And I don’t even know you. I hope I can find out your name at least. I’d like to honor you by at least knowing your name.

Because of that dark room with it’s absence of a teeny crib and beautiful pictures of your adorable smile, I will hug my babies tighter. I will grab onto life a little harder. I will complain a LOT less.  I will smile more often and I will forgive more easily and I will not take one single minute of life – whether it is here on the hard boxes of bliss or home in my own zone of comfort – for granted.

I wanted to be sad today, not quite like this. But i was feeling sorry for myself. Sorry for my own baby girl who was laying in the room across the hall from you. I dropped her sisters off at school and i was sad that I had to say goodbye to them and couldn’t tell them when i would see them again. Maybe in two days or maybe a week. I passed my little girl’s classroom and I started to cry as i realized she should have been sitting there at the yellow table, brow furrowed in concentration as she worked on her letters and numbers. She should be going on her very first field trip tomorrow to the horse farm.  She has been so excited for that trip! It hurts to think of how devastated she will be when she finds out she missed it.
But now I think of all the firsts you will have missed to, and i am glad for the ones my baby HAS experienced. I will try my best to not focus on the things she’s missed, and instead be overjoyed for the things she HAS had.

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Dear baby….you weren’t here long, but you made a difference. Your smile was beautiful and I will likely never forget it.
Fly high sweet baby girl~

 

T.

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.

turning the page.

Today we turn the page on a new month, turn the page on a new season even.

i hate being “in” over the page turn. It’s just a weird mental thing. Like not stepping on sidewalk cracks or having to wear certain shirts inside out on purpose. It causes a glitch in the matrix.
But we really didn’t have much choice in the matter so i’m trying to accept it for what it is and move forward without focusing too much on the calendar or the changing leaves outside the window.

i really just wanted to get some kind of post up on this actual calendar day.

I know there are so many questions some of you have about the information we have gotten from various tests/studies we’ve been doing on kendall trying to come up with a good plan of attack for getting her home. As i am exhausted at the moment, i hope this makes a modicum of sense.

Basically, we fought back the fungemia, her initial presenting issue – pretty well. Pulling the line and supporting her body through the septic shock by being proactive based on her past history – that was almost the easiest part of this stay. And just when we thought we had things all set for discharge – BAM….down went kendall again. Acting very sick, being in a  ton of pain, and essentially not giving anyone real warm fuzzies.
There’s so much i could write about – but the bottom line is this: her pain was out of this world insane for her, and she was requiring high doses frequently of narcotic pain meds, and because of, or maybe secondary to the pain, she was spiking fevers. EVery time she gets back over 102F, we have to re-send blood cultures to make sure we aren’t missing another infection.

So far those cultures have been negative, so we were really stumped as to what could cause her to look/act so septic and yet, apparently, be ok. She points to the pain as being located under or behind her ribs on her left side, and sometimes it radiates up that shoulder and sometimes its her right shoulder and sometimes it just hurts so bad she won’t take deep breaths and she gets in this hyperventilating breathing pattern. We have checked her pancreas and gall bladder – and while both are inflamed and angry and the gallbladder is full of sludge – the team doesn’t feel those are the problem. We know her spleen is three times its normal size and is not shrinking back down like it should be (it is stretched to capacity – and they do admit that could be pretty painful). We have ruled out kidney stones, established that she may have supermesenteric artery syndrome but that her renal pressures are ok for now, and essentially racked our collective brains for ANY other possible scenario under which we could be operating here. So far nothing new is popping out to anyone.

It is frustrating and heartbreaking and yet….I am glad we are looking. I am glad they are not giving up on trying to find answers for KQ. She is an enigmatic mystery for sure. And this pain – it is not my baby. It is new and whatever it is that is plaguing her it takes her WAY down when the meds have worn off and she is left only in this place of writhing, blinding pain.

We switched her antibiotics yesterday back to her old crazy plan where the nurses are scrambling, even with all the pumps and extra help, to fit everything in during their 12 hour shifts. And with that crazy schedule, her fever has not returned. Curiouser and curiouser. We have absolutely no idea what monster we are fighting.

This is …… it is one of the hardest battles I have helped my baby endure through. I am weary from this one, and I know her little body is so so so tired.

We don’t really have more of a plan right now. But this is what I know. I am exhausted so I will post this for tonight and hope that tomorrow brings renewed strength for the fight.

 

t.

Making Sandwiches.

For those of you who actually read the titles of my blog posts (that i AGONIZE over!!!!), you might think this one is a little strange. But I’ll explain it. See, i have this friend (well, i have lots of friends actually, i’m very blessed!) – but one crazy friend in particular whose daughter also has special medical challenges like Kendall, who sent me a message one day out of frustration that she just wished someone would make her a fricking sandwich. That’s all she wanted. Just one simple act of caring, of being cared for instead of being the constant caretaker. It spurred on some good conversation, and she shared the idea with a few other moms she knew in similar circumstances, and before long it became a “thing”. A place we could brainstorm ideas to help each other out on a practical basis.

This is one of those posts I struggle with knowing how to write. I HATE feeling like this is me asking for a handout, or for more help than we are already so blessed to receive from so many amazing friends and family. But i have been in that place before, watching friends struggle, wanting to DO SOMETHING to relieve their day to day stress, if even in some small light-hearted way, knowing so well that some days, the littlest things can mean so much. So if you choose to continue to reading this post talking about practical ways to help our family out – but beyond that – to come alongside ANYONE you know who may be going through something bigger than you feel capable of knowing how to support them through, then I will be grateful, and hopeful that maybe you come away with some new ideas. Please know that this is not intended in a spirit of asking for things – it is intended to answer the questions I get from so many sincere friends wanting to offer some hands on help. My answers sometimes change based on how my mood is that hour, or how things are going in this room at that moment, and sometimes i feel like my answers are so ridiculous that i just can’t even answer the questions! So with all that being said – I present – a few ways to “make sandwiches” for your friends and family!

First I want to say thank you in the biggest way possible to the many of you who have come through with warm meals for myself and ben while we are in the hospital. A few of you have even sent meals to our house and i have to tell you – Food is one of the biggest ways you can tell ME you love me. It means SO MUCH to me to not only be able to feed myself, but have food for the kiddos, especially during the past few weeks when my time with the big girls is limited to a few hours and cooking is just not something i feel up to doing. But even though it is not easy – some of you have spent multiple frustrating hours on the phone dealing with local places to the hospital to have food delivered here in my name – and beyond just the good food, i’m super grateful that you took the time and persevered through the red tape to get me food. Know that I appreciate the time and effort JUST as much as i appreciate the food! It touches my heart and soul in ways I find hard to put into words. And for those of you who brave this insane construction traffic to actually bring food AND a hug to me? You are my heroes. Your very real “sandwiches” (food) are one huge way of helping not only our family – but any family you may know who gets stuck in the hospital for days on end! It is not always easy to get food to hospitals – but know that when you can and do, it is huge!
And some of my food fairies know me well enough to know that i often dont have enough hunger drive to even put into words what i want, nor will I usually ask for what i really want because I don’t want anyone to go out of their way. So just taking a chance on food that you THINK will work is still always a good thing. Unless you know of specific allergies or dietary restrictions – most of the time we are so “numb” to the real life acts of eating and hunger that if warm food shows up in front of us, we will eat it. So please don’t feel like you can’t help with food or meals just because you don’t have specifics. For SO MANY special needs families, food is just like sending hugs. not even just in “crisis times” – but any time. Life with kiddos like ours is hectic in ways that cannot be described. It’s crazy, but it’s our crazy. We pull on our boots and git R done because that’s just the way it has to be.

In the same vein as warm food (or fresh meals, or even meals that can be put in the freezer for SUPER crazy nights at home!) – is snacks. Especially in the hospital. Having some awesome friends who know my penchant for mindless eating send a couple bags of snacks i can keep in our room cabinet has been my saving grace this stay. Nutrigrain bars, mac and cheese cups, cookies, nutella, mmmmmm nutellaaaaa……..I got sidetracked. Anyways – again, short of specific allergies or diets – if it looks and sounds good to you – it will probably look and sound good to an exhausted mom or dad in a hospital room who hasn’t been able to leave their baby’s bedside in a few hours and just needs some quick fuel in their bodies. don’t let your thoughts of “oh i don’t know what they like” hold you back! Just throw some stuff in a bag and send it off!

Most of you have heard me in particular harp on this one – and i’m sure some of you are sick of hearing it – but we DEFINITELY would not survive without gas cards. It is NOT an easy choice to have all of Kendall’s care be up in Milwaukee when we live south of chicago. In fact sometimes it is downright scary. And I second guess myself all of the time. I HATE how far away we are from home, from my big girls, from my “real life”. So we try to budget in for the random hospital stays, knowing it will blow our gas budget right out of the water. But even with the most careful planning, you never really know how it’s going to hit you til you’re in the throes of it. So many special needs families need to take mulitple trips to doctors and hospitals and gas cards are SUCH a nice gesture. Even if it’s not enough to “fill ‘er up” – knowing that your journey was thought of, cared about, prayed for by someone who took the time and money to get a gas card is an amazingly practical way to “make them a sandwich”, to be a real help.

But even then – there’s some things that mean a whole lot that you might not even think of.  Gift cards to places like Walmart or Target might seem like an odd thing to give to a family in the hospital – but I can tell you, on the very rare occasion we get to get out for some fresh air either while we are still inpatient or once we get home – it feels like the best kind of freedom ever. Sometimes it’s been a long time since we’ve felt “normal”, and being able to just wander the aisles aimlessly and pick out a few small things for ourselves or maybe for the sick child or their siblings, it can really mean a lot. Think of the last time you ran into Target for something you “NEEDED” and came out with 100 other little things that somehow found their way into your cart. It happens. I’m guilty. But it’s that kind of fun “splurge” that can sometimes mean so much to a special needs momma. Or just pick up a few fun things that you think might cheer her up. who doesn’t love a new lip gloss/chapstick/mascara/pair of sunglasses/clearance pink floyd t-shirt???? All i’m trying to say is – our lives are so hyperfocused on our sick child, or hospital life, or fill in the blank with whatever stress – and sometimes the simple act of buying a little something new helps us regain a thread of sanity, a small sense that things WILL be normal again someday. Maybe this sounds trite – and to some i’m sure it actually IS trite – but for me – i ADORE nothing more than getting a fun package packed with a bunch of silly fun things. Lip gloss, chapsticks, gum, socks, hand lotion, mascara, fun pens, markers, a journal, itunes cards, hair binders (I call them binders but i think they are just “elastic hair bands”), antibacterial stuff that doesn’t smell like the hospital stuff, travel sized toiletries (or condiments – those work too!!!), travel sized shots of liquor…JUST KIDDING!!!! A water bottle or one of those nice sturdy plastic tumblers with the lids so we remember to drink water, RAZORS because you forget how stubbly you get when your showers are limited to 5 minutes of hot water trickling out of the family shower, body lotions, body sprays… But seriously – you get the idea?
Practical hands-on help in the form of doing our laundry, or just come helping clean/disinfect the house is also SO SO SO huge. But comes with it’s own set of challenges sometimes.

I guess my point is here is that ANYTHING is always appreciated. I think sometimes we feel like we won’t do the right thing, or that what we want to say or do or send would be viewed as stupid or unnecessary or wrong. And the truth of the matter is – it won’t. Whatever you do, it will be right. Because it was done with a pure heart, and your intent was to make them feel loved, thought of, not alone. Sometimes that’s the biggest thing we can feel is just not alone. Oh i thought of one other thing i want to say – for the moms you might be thinking of who endure battles beyond what you think you might be able to face…and most of us as women are bad about this in general – but taking care of or, shocking thought, PAMPERING ourselves. Maybe a gift certificate to a local salon to get a haircut/trim, or a mani/pedi, or a facial spa treatment. Maybe it’s a gift card to Ulta or Sephora for a quick pick-me-up makeover. We often feel worn out, worn down, frumpy and utterly beyond help after a couple weeks of hospital life. The gift of a few hours to go out and get a brand new look is utterly exhilarating! (Ok maybe that’s just me….but again – i’m just trying to help you see some out of the box ideas!)

I wanted to post this a few hours ago so i’m going to wrap it up here. I hope that this is taken in the spirit it was intended, and that is to say that just looking for every day ways to show someone you’re thinking of them – whether they are living in the hospital or have just had a rough week – it means a lot. it’s a very practical way of “making them a sandwich”, so their spirits can be boosted.

For those of you who HAVE specifically asked me what I need, what my family needs, or how else you can help- obviously any of the above ways are fabulous. We do have a paypal account set up for Kendall’s “extras” – things that insurance doesn’t cover or would never think of – like feeding us in the hospital, the gas for trips up here, etc. You do not need a paypal account to use paypal – you can just enter your debit/credit card info at paypal.com and direct it as a “gift” for family/friends to hopeforkendall@gmail.com  And in the message you can specify if you want it to go towards family expenses or specifically to Kendall’s medical needs.   A HUGE thank you to those of you who have helped our family out with this  seemingly never-ending stay. I am overwhelmed with thankfulness for our amazing family and friends.
If you’d like our address for cards or a package full of condiments – please send me an email at terrarist101@gmail.com (if you click the little envelope at the top of the page it also will direct you to my email!)
And if you have any other questions or suggestions you want to add here – feel free to leave it in the comments!

Thank you so much, dear Kendall Krew and faithful Terra Talking friends.

it has been a long and hard day getting the news we are here for at least a few more days while we try to figure kendall’s body out. I do my best to stay as positive as possible but the utter exhaustion is definitely starting to wear me thin. (Not LITERALLY thin, because then that would be awesome,,,, but like, my patience is thin. my tolerance for stupidity is thin. my nerves feel frayed and thin….)
Your prayers and love from afar are ALWAYS ALWAYS ALWAYS so appreciated. Even if you never get the chance to send anything but that – know that i feel and appreciate every single one of those good thoughts. We all do. Always.

keep on keepin on~

 

terra

YES – practical hands on help is always appreciated.  But it’s not always practical.

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