A Story.

This here’s a story all about how my life got flipped turned upside down….
Jay. Kay.

It IS however a story of the crazy day I had.
I know how much you all love to laugh at/with me.

So – in case you needed reassurance that you were actually a much better mother than me.

I woke up late. I’ve been having having bad eye allergies lately. When my eyes are allergic they hurt in the morning. It’s hard to open them. I also hate getting out of bed before 10 am, so…. you can see the dilemma. Anyways – so there i was, laying in bed and dreading opening my eyes when Karissa walks in and her hair is a hot holy mess (as per usual) and I remember – it’s picture retake day.
They had to miss the original Picture Day at school because their sister had just gotten intubated and they needed to come up to the hospital to see me because we knew we were in for kind of a long haul so they got pulled out of school for that day.
So I force myself out of bed and start trying to deal with K2 and K3’s unruly hair. At least they had picked out semi-cute clothes the night before so i didn’t have to fight THAT battle…Until k4 came in dressed in an orange dress when i’d picked out a cute leopard print one for her. It was orange day for spirit days. If there’s a color that an anemically pale faux red-head should not ever ever ever wear – it is orange. So – we compromise. She can put on the cute dress for picture time and wear the orange one for school. Fine. Go back to trying to curl both girls’ hair while trying to get my eyes to cooperate and get dressed in between because I was supposed to meet with our social worker from palliative at 9. And by the way I can’t get my contacts in my stupid puffy eyes and i cannot drive in my glasses. Plus i’m too vain for that.
So we finally get everyone dressed/hair kinda cute/put on the buses, and I make it to starbucks in time.

Standing in the line at the Starbucks I get a phone call – and I could see that the number had just called my home phone too so i thought it was important and i answered it. It was the Dentists office.

“yes, mrs. atkinson? we had the girls all scheduled for their 6 month cleanings this morning…..at 9???”
me: that’s cute. It’s almost 9:30 now.
“yes, so….we can get you in at 11:30 for all of them or…..you’ll have to pay the missed appointment fees???”
me: ummmmmm. Do you have antibiotics for Kendall then? (and by the way why is everything you say to me a question?!?!?!?)
”no, no, we dont have the antibiotics…” (kendall needs antibiotics because of her endocarditis issues)
me: ok neat. Then cancel Kendall, we will figure her out later. I’ll have the other three there at 11:30”

So….. I suck.
And then that made me remember that I needed to call milwaukee to change our IVIG schedule/surgical appointment AGAIN (for the third or maybe fourth time) because we actually have pulmonology on Monday and that takes forever to get an appointment with him so i can’t move that – but the surgeon is also very hard to get an appointment with and we had just finally set that up so I can’t move that. But ben is out of town so i have to try to cram in the surgeon appt AND IVIG but we have to run IVIG over at least 6 hours so we can’t go too late to the infusion clinic and oh my gosh my brain might explode!!!! Anyways. No time to think about that now.
Got all the social work stuff done, ran to Kealeys school, schlepped through the cold to get her, went to the other school, had them pull the girls out of their classes, got the picture schedule so we could make sure they didn’t miss pictures AGAIN.

Drive to the dentist office where I am handed a manila folder full of paperwork they need to “update”, hand off the kids to the techs, and start doing the insane amount of paperwork. The kids get finished before i am done with this paperwork (and believe me – i am mostly filling it out by writing “see above” or “check sisters file” because that is just too much ish for me to be dealing with. They have copy machines for this crap.) No cavities but I get the usual lecture on helping them floss and set a timer for brushing. Trying to stifle laughter because if they even remember to put toothpaste on a toothbrush and put it in their mouths at least twice a week we are doing good. But ok. Kaylen is having molars come in so she isn’t just being dramatic about her tooth pain – and they need sealants in a couple months. Kealey’s molars just came in so she needs sealants too. Karissa needs a followup with ortho which – oh joy!- was already scheduled for this coming friday. better write that down on my hand so i don’t forget.
Back in the cold, grab some mcdonalds, because by now they’ve all missed their lunch periods, drop off kealey at her school, take the big girls to their school, get pulled into their social workers office to discuss kendall’s IEP that is hard to meet because now she’s only there for two days a week. Fine. Change her goals. Just make sure she can SIT STILL and not hit other kids in the class when she doesn’t get her way – word that however you want. I don’t care.
By this time I have to pee so bad i am not even sure how i’m still holding it. Eat an eclair for lunch because, hey, it was there and i needed the sugar. Get Kendall into bed, try to catch up on some school/medical paperwork I need to do, have a discussion with our nurse about the schedule for tomorrow and next week, freak out because i have literally done NOTHING for Kendall’s birthday tomorrow, and then greet children coming home from school.

And get told
“the camera broke so they have to reschedule picture day”.

 

And that is why mommy is rocking in the corner chewing xanax and clutching a bottle of wine.

THE END.

How i am.

This might be one of those really raw, rough posts to read. I’m kind of an emotional mess and I don’t really have a filter right now. So very many of you have asked how i’m doing this past week. Every time the nurse or care partner comes in, they ask “how are you mom, you need anything?”
and my answers are always the same – I’m good. Kendall’s good so i’m good.
When what I really want to say is….

Actually i’m horrible.

I need a shower. A real shower. a Really Long Really Hot shower complete with a non-dull razor that got stuck in my hospital bag and real non-hotel sample shampoo and conditioner. I got a quick one the other day when i was home for a few hours – but it was rushed because i was trying to cram a weekend worth of fun into a couple hours.  After i shower I need a pedicure. And a manicure. And a fluffy white bathrobe. And a huge glass of wine. I need to not have a care in the world for four hours while i’m thusly pampered.
I need a massage – but my back hurts too bad to ever get one, so I’ve never had one. Ask my chiropractor who just about gets kicked in the head every time he presses too hard when trying to give me an adjustment. And I also probably need an adjustment badly after a week on the boxes of bliss. I need good sleep. for hours.  I need to be on a beach somewhere warm. I need to have a really good breakdown cry, the kind where your eyes are so puffy the skin hurts, and then i need to laugh so hard my sides hurt.

I need a hug. Just a really good hug.

I need a good blowout and to get my hair recolored for fall. (yes NEED!)
I need to stop drinking cokes and eating nutella nilla wafers like it’s my job.

I need a job.

I need to feel like I’m doing a good job for my other three girlies, being the mommy they need.

I need to know my baby is getting really truly better….not just “out of shock”….but really recovering from this nasty bug that’s taken her down.  I need to feel like it is ok and safe to bring her home and complete her care and recovery there.

And then that makes me think of the hot mess i left the house in….and i need Alice from the Brady Bunch to work her magic on the laundry/dishes/crap we left out….(but i must insert a huge shout out of thanks here to my BFF who realized that the ice cream dishes in the sink were probably going to cause some MAJOR funk if left all week so she washed them by hand. Thank you my beautiful friend!)

I need a break. I just want a break.

But this is all coming from a place of exhaustion you understand….not just physical tiredness, but the kind of exhaustion that seeps into your bones and makes you feel like gravity has double the effect on you. It is not just that my physical body is tired, but my physical body literally ACHES from carrying the stress of this past week. My mind hurts from trying to analyze her labs and remember them off the top of my head and make this numerical information make some kind of sense so i can help my baby feel better. My heart hurts from watching her suffer so greatly this past week, to the point where even her stoic little self is just absolutely DONE with feeling so crappy. My soul hurts from the hard conversations i’ve had to have with some of her doctors who i have come to respect and love so much. Everything just aches….and it makes me tired.

So i guess that’s how i am doing, if you want to know the truth of it. I am tired, exhausted, worn out and doing my best to stay positive and keep my head above water. I’m sure i’ll be better tomorrow or the day after that, as we see kendall hopefully start to make that turn around the bend and come back towards “being better”. I know that she will…i’ve not given up hope. I’m just admitting to my own humanity, my own inability to always keep it all together. I know there are so many prayers being said on our behalf, and for that i am so grateful. So many of you have made sure i was eating real non-window-sill food and i cannot thank you enough for that either. Your tangible acts of love and support are SO SO SO very appreciated and i am sorry that i have not been able to properly keep up with thank yous.. I hope you know that i am beyond grateful to each of you though.

I’ll write a happier update later today I am sure.

Thanks for listening to my whiney rant.

and thanks for loving me in spite of it.

keep on keepin on.

<3,

me.

Walk by faith

So I have something exciting to tell you – one of my special needs momma friends wrote a book. A real live actual BOOK. And I am SO excited for her! I know it was a true labor of love to share her story about her journey through infertility and then her subsequent journey as a mom to a medically challenging child.

She has been doing lots of interviews and press releases and all sorts of exciting stuff as part of her efforts to promote her book, and I wanted to do my little part to help pass the word along about it.

The blog page for her book can be found at

http://angiemaddoxauthor.wordpress.com/

 

And here is an excerpt from her book, as copied from that blog:

People asked us all the time when we were going to have a baby, which I really think is one of the rudest questions you can ask someone. You just do not know what a couple might be going through and this question became quite painful to even hear, as if we were less valuable as people without children.

Then I would read in Genesis 1:28, “Be fruitful and multiply,” and I felt like I was almost being disobedient to God because I could not get pregnant! As a woman, I felt completely worthless.

On a really bad day, I would almost have myself convinced that I should persuade Donnie to leave me and find a woman who could give him children. … Needless to say, these were very dark days. Still, I continued praying and I made a vow to God that if He would simply get me through all of this, I promised I would never stop talking to Him and I would never be anything less than completely honest with Him. After all, the Lord already knows what is in my heart, so what good does it do not to be honest about everything?

 

 

 

mybookhere is a link to purchase her book on Amazon for yourself or for someone you know who may be going through a struggle in their faith with regards to their mothering journey.

 

I’m so proud of you Angie! Wishing you the best of luck on your journey as an author, and of course your continued journey through motherhood with one of the special ones~

 

And who knows, maybe someday I’ll be able to write my own post about my own real live book you can buy!

 

Terra.

a long time coming.

On friday morning, for the first time in over 11 years – I will be alone.

All four of my beautiful babies will be “home”, but not at home. They will all be at school. For almost two hours – I will not have snacks to make or tv shows to find or polly pocket dolls to undress and redress.

And I thought i’d be SO EXCITED for this day.

Don’t get me wrong – I still am. And when I’m gloriously basking in a fully hot shower without having to keep jerking open the door going “what is that noise? who just threw a cat? Do i smell smoke???” – i am sure I will be ecstatic.

But a teeny litlte part of me is also kind of sad. I’ve done it. My mommy gig, at least as i’ve always known it, has officially ended. I’m a different mommy now. Oh I still have a little booty to keep diapered, and so many hungry mouths to keep fed. But i’ve done it. I successfully raised four little babies from wriggly screaming little beings into actual mini-humans, who go places without me and learn things that I am not teaching them.

and the thought of that makes me want to SOB endless tears!!!! At least my baby isn’t leaving me for very long, yet. 2.5 hours on mondays, wednesdays and fridays. By the time you factor in the bus time for the middle two, I really only have about 1 hour and 15 minutes of truly childless freedom. that’s a good start. I’ll take that. I can ease into full days of eating bon-bons on the couch watching daytime television. 😉
I am SO impressed with how quickly Kendall’s school team was able to make this transition happen. MANY phone calls back and forth took place, and I am sure even more chaos happened behind the scenes for them to be able to have Kendall ready to enter her assigned classroom on a moment’s notice!  MAJOR props to them! We were able to arrange for Kendall to go in today at the end of her class to meet her teacher, meet her friends, and we could introduce all her new friends to Kendall, as well as some of her accessories.

I sat down in the middle of a very full circle of anxious little precious faces, pulled Kendall into my lap, and told them:

“Kendall is SO excited to be here with you guys! she has been looking forward to school starting for a VERY VERY long time! When school started for you guys, she was still in the hospital, and she was pretty sick. But she’s doing a LOT better now. She has to keep this backpack on her all the time because it has her special food in it. See, she has these special tubies that the food goes into. (I asked Kendall if she wanted to show her friends her tubies, and she said she did. She lifted up her shirt to her belly level to show her GJ tube – and one little boy’s eyes got REALLY big, like he was going to go home and ask his mom if HE could have the super cool belly button like Kendall’s! Either that or he was figuring out how he could get it out of her….I couldn’t tell.) So these are her tubies, and that’s really all that is different about her. Other than that she is just a regular kid like you! she loves playdoh and Ariel the Little mermaid and playing house – and you know what? you can help Kendall! Wanna know how? Just play with her. don’t be scared of her tubies, because you will probably never ever see them. But be her friend. She LOVES friends. She wants to be your friend and I hope you all become great friends this year!”

And then I started tearing up so my little shpiel was done.

Kendall sat through (I use the term loosely – she has the attention span of a flea and was up for kleenex FOUR times in 7 minutes and no her nose isn’t running) the rest of story time with her class, and then school was done for the day! We spent nearly an hour then going over last minute details and having her teacher really sit and HEAR me about Kendall’s ins and outs and making sure everyone was on the same page as much as we can be without a truly up to date IEP in place! Really, cannot say enough good things about Kendall’s school team! (even if i did get my hand slapped for putting up a picture i took of kendall during school hours! I had no idea we couldn’t do that!!! So now i feel horrible. But i’ll get over it!) Kendall was like a mini-celebrity though with all of her former teachers and therapists coming by to give hugs and tell her welcome back! It was a nearly steady stream of people who love little miss who were all SO excited that she’s coming back!!! It just does a momma’s heart so good to hear how well cared for she is while she is away from me!

So for now we will try to get her all perked up tomorrow for a very exciting day on Friday. We will make sure she has had enough fluids and as much o2 support as she needs and make sure her medical bags are all packed for school. I will try not to think about the fact that the last time it was a friday and the 27th of a month, she was not long for this world. Instead we will turn the Friday the 27th memory into one of LIFE and living. i will celebrate all of the amazing progress she has pushed through and worked through to get to this point. I will cherish all that this moment will mean – for her to get to go to school. Her wish. the thought that’s gotten her through some painful and tedious rehabilitation. This moment will be both mundane and anything BUT mediocre. I don’t know if i can put it into words. Because some of the things we have endured and lived through this past year don’t have words. They are just….moments.

but yeah. basically this friday…it’s been a long time coming.

 

t.

Dear Teachers

Dear Teachers of my children this year –

We are about to embark on a new school year. Today you will meet my two middle children. They will be with their dad and their hair will probably be crazy and they will be full of their usual giddy excitement bridled by their shyness at meeting new teachers. You will be pulling your hair out with the craziness that comes along with the fun “meet the teacher” day. You will have johnny’s mom who wants special treatment for this and Maya’s dad who wants to talk your ear off about his amazing genius daughter and a long line full of everyone else who wants to share their darling little angel’s life story with you in the one hour allotted for this fun event.

And I hope you see my children. Notice them unpacking their school supplies, notice their excitement, notice that I am not there. Notice that they are with their dad who is out of his element on meet the teacher day but who is doing a damn good job of holding things together.

IMG_1740

Because what you don’t see and don’t know is that I am not there because I am here. Because I have been here for almost 4 weeks. Here is Milwaukee, the PICU, keeping their baby sister alive. I have not been there – there is home, school supply shopping, first day of school outfit shopping, hair-brushing, girl-talking about what this new year will hold.

My heart aches for my other babies. I should be THERE. I should be HERE.

Tomorrow morning they will come to school and pile into their desks and be all hopped up on sugar and excitement like the other 20-some kids in your classroom. But they did not get “have a great day!” kisses and hugs from their mommy. They did not have their mommy taking 392 pictures of their outfits and walking them to the bus stop. They will be desperate for you to be kind to them, they will need your approval and love on this first day like they never have before.

There will be many days these first few months where homework will be missing/incomplete/totally forgotten about. I am the mom who is forever late with field trip slips, ignores the PTA fundraisers,  frustrates you endlessly because you have to hound me for stuff that should have been turned in weeks ago. i know all of this because it has been thusly since my first baby entered school six years ago. But this year will be different.

our family has been through a lot this past month. Scratch that. our family has been through crap that no family should have to endure over this past month. Ben and I, we’ve tried to shield the girls from the worst of it. Maybe in that place in their hearts where kids know way more than they should they have an inkling of just how very close we came to losing their sister. But for the most part, they’ve weathered this storm with their usual stoic attitudes. Their little shoulders carry far more weight than you can imagine. Please be gentle with them.

See cause they didn’t get me tucking them into bed early the night before school starts and praying over them like I usually do. we didn’t lay out their outfits complete with accessories and shoes at the foot of their bed like we normally do. i won’t be there to try to make them a good healthy breakfast and make their lunches and tuck little notes into it like I usually do.

So I need you to be understanding of all of this. I need to know that they are in good hands this year, when they are with you for more hours than they are with me during the school year. I need you to know that Kaylen is stubborn and she will give you a run for your money but that kid is one of the strongest kids I know. She has had to push, pull, shove, and elbow her way into getting attention in this family and she has learned how to do so many things on her own. And I still cannot believe that my baby budget is in first grade and will be with you ALL DAY. She’s been my constant companion for the last 6 years and I am going to miss her. Please appreciate her crazy little sense of humor and please foster her love of reading and please please please keep her busy enough that she won’t be plotting how to draw inappropriate things on the whiteboard when your back is turned because I know how her crazy little mind works. She’s a good kid, you just have to figure out how to harness her craziness. She’s adorable and she will love you fiercely once you’ve earned her trust. she just lost her first tooth and her arm is all bruised up from an excited big puppy incident and she is SO SO SO excited to be a big first grader.

I need you to know that Karissa lives in her own little world. it’s a happy little world most of the time. It’s full of cute puppies and fluffy kitties and other random stuff that i don’t always catch because her teeth spacer makes her even more unintelligible than she is normally. she will try your patience because you will have to repeat yourself 3 or 5 or 20 times because she was busy gathering clouds and admiring the puppies in her world when you were giving instructions on how to do homework.  She will lose homework, or forget homework, or forget what homework even means sometimes.  I try very hard to stay on top of these things with her but I am often overwhelmed myself by trying to keep her head down here in this world. She is a beautiful little girl though who will melt your heart when she tells you she loves you. which she will. she loves everyone.  there’s not a mean bone in her body. She gets hurt easily though. Please protect her, as much as as you can, don’t let the mean ones get to her. Let her talk about her feelings and let her color on her homework sheets, and let her still be a little girl even though she is in 4th grade. She will be lost without her big sister there to drag her to the right bus line or remind her they are car riders. Please don’t lose her. Please love her back.

i need all of you big middle school teachers to know that Kealey is….amazing. I have no idea what we did right with that kid, but we did something right.  Her maturity is so far beyond her years. She holds us all together somehow, especially when i’m not there. and sometimes even when I am.  She LOVES school. She soaks up new knowledge like a sponge and she loves to be challenged with new ideas and concepts.  she loves to laugh and oh you should hear her when she gets that head-thrown-back deep fit of laughter that ends with the giggles. She needs her friends. A lot of them are on a different team from her and even though she is scared to death of being at that big school with so many kids, she told me she feels like she is on the team she is supposed to be on.  Please help her encourage these new friendships.  Please keep your eye on her. Please notice her struggling to run from one end of the school to the other and help her get to the right class on time.

I need all of you at Kendall’s school to know how absolutely amazing this girl is. I know so many of you know that. This will be her third year there. And I hope she makes it there for at least a few weeks. The thought of school is what is getting her up and out of bed, getting her to work harder and be stronger and be excited.  I need you all to know that she LOVES you, and misses you and will be back as soon as we can get her strong enough to be there.

These are my babies, dear teachers. I love them fiercely and I miss them when i’m not with them and I am entrusting them to your care and I hope you know how very precious they all are.

I hope you have a good last day of “freedom”. I will be praying for you as we go through this year. you have huge jobs and so much responsibility on your shoulders and you are underpaid and underthanked but at least by me – you are NEVER underappreciated.

Thank you for everything you do~

 

Mrs. Atkinson

momma bear to the most special K’s in the whole wide world.

Roll On 18 Wheeler.

Ok I have no idea what the 18 wheeler reference means – i just know it’s an old Alabama song about movin’ on. Or some such.

Anyways – wow it has been a minute since i posted.

We’ve been here, just rollin on like we do. we made it through Kendall’s marathon 6 weeks of IV antibiotics with that crazy, sleep-depriving schedule. I held my breath for the entire first week off of antibiotics praying that she wouldn’t spike a fever or complain of leg pain or do anything else that might otherwise imply that she was trying to get sick again. And to be honest, i’m still not sure i’ve completely exhaled that fear yet.

IMG_1151 She’s doing great. Gained back some weight, gained back a lot of her lost strength and stamina, in many ways seems none the worse for wear based on how extremely sick she had been. I do not know how this kid does it. She embodies the Timex motto “Takes a Lickin’ and Keeps on Tickin’.” I can only pray for strength like hers. Because I on the other hand feel worn out every day. Like I will never catch up on sleep again. And it’s not even like i’m still missing sleep. It’s probably me needing to have my thyroid numbers looked at again or something stupid like that.

We’ve had a pretty packed first month of summer break. The girls and I are actually DOING stuff this summer – which is still such a challenge. It’s hard to leave Kendall behind even though I know it’s the best thing for her to keep her healthy. it’s also hard to tell the girls “no we can’t do that because Kendall can’t go”. Our nursing coverage has been awesome and that is helping me find a good happy medium of being out with the big girls and not feeling like Kendall is too deprived as we try to find a good mix each week.

Other than boring you with details about our trips to the library, Great America, Sandusky Ohio for dance nationals, or the billions of trips to Cherry Berry we’ve taken, there’s not a whole lot to update. have i mentioned how tired I am yet? I’m sitting here in the Panera, kidless for one whole day (Kendall is with her nurse and my big girls are up in the Dells with my parents), and all I really want to do is take a nap. I’m tired of feeling like this. I’m tired of feeling too tired to really do anything about it. Today is nice – feeling like i’m off the grid in a way. Reading a book, enjoying an iced coffee that no one is bugging me to have drinks of, not getting 829 snacks every five minutes for everyone. i am hopeful that this quiet helps restore my sense of health/energy/self/peace. I’m too tired to even put my tiredness into words.

Maybe it’s not just tiredness. maybe it’s just emotional overload. Or ongoing stress. i don’t know. I don’t really care WHY i feel so tired, i’m just tired of feeling this way. I feel sick if i eat food and I feel sick if i don’t eat food. i know I need to make some serious changes in what we are eating, and that I need to get out and walk or exercise more. i know all of this but actually getting the oomph to do it is a whole other ballgame. Anyways – i’m not trying to bore you all to tears with the ins and outs of my state of mind. It’s just where i’m at. I am so thankful for the friends I have who stick with me through the times of not wanting to talk at all and the times where I just want to talk about medical stuff and the times where I don’t want to do anything. Thanks to my family for always making me laugh no matter what. Thanks to everyone for everything you do for me, my kids, my family. I cannot thank enough people with enough thanks.

anyways – today is good. Kendall is doing well, my other kids are having fun, I have time to sit and think and breathe. In a few weeks I will take a quick trip with a friend for more time like this. And slowly but surely I will recover from those horrid few days in may and I will bounce back with the same energy Kendall has.  They will have changed me, somehow, slightly. Taken my innocence a little bit. I don’t think it’s possible to stare death in the face like we did and NOT be changed a little bit. But i will get my act together. I will not let those days in the past shape my days going forward.

For now I have  a birthday barbecue to plan for the 4th. I am so excited to have two of my three brothers here in town with their families, and other dear friends coming over to our house to crowd into our kitchen and the little pool Ben sets up every year. It’s always crazy but always fun. Gotta hit the store and stock up on the Cokes.

so that’s about all I have to say about that.

Till i have something more interesting to say –

 

Terra.

You will be ok.

I have a few friends who are expecting babies soon. They each are having different issues within that pregnancy, and a few of them have even asked me for advice or words of wisdom about this or that. (apparently I can appear from the outside like I really do know what I’m doing most days. who knew?) And as I thought about what/how I would answer each of them, I realized that there were certain things I would go back and tell myself, before we started this journey with Kendall. I questioned if I would really want to know, ahead of time, all that we would go through.

Would I go back and tell myself everything that was coming up, watch out for that bend in the road, or that shoulder you think you can pull over and rest on, it will give way? Would I go WAY WAY back and tell that punk sitting in her physiology class to PAY MORE ATTENTION during the Krebs cycle part of the curriculum cause someday you will wish you understood what a geneticist was trying to explain to you about your daughters metabolic defect? I don’t know what it would change. Because life has this funny way of taking you on a ride that ends up being far different from whatever you imagined when you got behind the drivers wheel. Even if you have a perfectly printed list of google maps instructions, and have programmed your GPS to accomodate traffic – you will still be shocked and surprised at where you end up in life.

So I think I would just tell myself this:

 

You’re gonna be alright. Just like the lyrics of the Bob Marley song you will someday sing to your baby girl as she lays struggling for breath, everything is gonna be alright.

It will not feel like it many days. You will spend many long hours wondering how exactly this is all going to turn out right when it all feels most definitely very wrong. You will learn to stop counting time in weeks or days, and instead learn to take things minute by minute, hour by hour. You will learn that being “alright” will change in meaning. That what you once thought of as being good and ok will suddenly be a pipe dream, and you will settle for things that would have once shocked you.

You will learn a whole new vocabulary. But this is ok because you have always loved words and meanings and using big words just to watch people’s faces. This trait will come in handy someday when you are schooling medical students and resident doctors (who you will take to calling “baby doctors” or “doclings”) about how to pay attention to your baby’s labs/vitals/painful screams. You will find that words like “thrombocytopenia” and “electroencephalogram” will one day roll off your tongue as smoothly as the swear words that you will find yourself dropping far more often. You will be shocked and amazed to learn that while you have always hated numbers and math, that you have this sudden capacity to store 2 months worth of CBC values in your head so you can glance at your child’s lab results and know instantly whether she is getting an infection.

You will realize how very precious “outpatient time” is. No one can prepare you for this. you THINK you appreciate your life as it is right now, but until it is replaced with long days in a hospital, standing at the bedside of your sick baby, you cannot possibly know what it is to appreciate life as it is right now. But this is a good thing. You will realize that as your friends have their babies, and those babies, born around the same time as yours, start to do things that your baby is not, and may not ever be able to do, this will tear a little piece of your heart out irrevocably. But it will be replaced with something new. It will be replaced by this nearly palpable sense of pride in the things your baby CAN do. While other moms take for granted that their baby coos or smiles or lifts their head up – the first time your baby does these things – months and months and months after you have given up hope for them – you will scream with joy so loud that people will think you have won the lottery. And you will have. The richness of watching YOUR baby hit milestones is unrivaled. It is heartbreaking and hard-fought and horrible to watch them go through therapy sometimes but it is oh so worth it in the end. You will not even understand this sentiment until you have lived it.

You will learn to adjust your expectations – for your baby, for yourself, for your friends, for everyone around you. You will learn this because if you don’t adjust them then you will be hurt on a daily basis. So instead of lashing out in pain, you just learn to rely solely on yourself. This works for about 9 minutes, and then you realize that you do not have enough strength on your own, and you turn back to the God you wanted to curse a few minutes/days/months ago for “doing this to your child”, and you realize that it is ONLY by supernatural strength that you will be able to put one foot in front of the other and continue on. You have a different relationship with God than you had before. One that includes yelling at Him, crying out to Him, begging him for relief/healing/help, sitting in the windowsill of the hospital room and chatting with Him like He’s sitting there cross-legged on the other side of the windowsill. You may not make it to church, like ever, but you realize that church is a trauma room in the ER, it is in the back of an ambulance, it is in a vinyl chair that squeaks with every movement you make as you keep your eyes trained on a wavy line and the numbers it beeps back at you on a monitor at your baby’s bedside. Church is the friends who come bring you cokes and cake and toilet paper and lotion in the hospital, and fill your house with diapers and food and gift cards when you are home.

You will have a range of emotions far wider than you ever thought possible. You will watch friends have to pick out pint-sized caskets for their angels that leave this earth too soon and you will beg with every fiber of your being to God that you never have to make that choice. But you know, in some dark hidden place that you rarely go to in your soul, that you might. And you know that no matter what, you will be alright. You will watch those same friends handle the loss of their baby with such grace and strength, watch them as they rise from the ashes of broken dreams and broken hearts and see them say “ It is well with my soul”, and you will find within yourself the strength to keep going. Somehow, someway. Because if they can do it, you can do it. but this strength doesn’t come free.

you will exchange your carefree innocence for this strength. The part of you that used to get mad at people who cut you off in traffic, or rude salespersons, or the server at the restaurant who spills soda all over you – that part is gone. You realize that life is really too short. You realize you need to save your anger for the idiot know-it-all attending doctor who wants to change your child’s meds around willy-nilly. You need to save that feral strength of a momma bear to unleash on a doctor who won’t order pain meds when your child is clearly in pain. Your friends will still be walking around their normal lives talking about their new expensive shoes or the 792nd trip to disneyland that they are planning and in your head you will be screaming – I would love to just not wear hospital socks with grippy bottoms and take a trip ANYWHERE but to the hospital – and you will realize that you are changed.

you will change. in many small ways, and in a few big ways too. They will be imperceptible to you at first. They sneak up on you, like the dark of night slowly creeps into a long summer evening. You will wake up one day, a few weeks or a few years into this new life you live as the mom of a baby with “medical complexities”, and realize that you CAN do this. You can do this no matter what. You will feel pain that you have never thought possible, and you will feel joy that seems unreal. You will question every day if you can keep doing this. But then you will see your beautiful baby – you will not see the tubes and wires that come out of nearly every possible place on their little bodies. You will see their daddy’s eyes, and your nose, and your mom’s hands. You will see them for their beauty, and their strength, and their amazingness. You will know that every minute is precious, even those minutes in the middle of the night when you are troubleshooting an IV pump that has a mind of it’s own, when you knock over the bag that contains body fluids and step in it (and oh by the way, you will learn that your gag reflex is much much stronger than you ever thought it could be), when you are dealing with a nurse who is less than gentle when treating your fragile child – all of these times are precious. Hold on to them. Don’t regret them. Never regret the choices you make, or the chance you took to give your child the best shot at life they could have.

You will be ok. In the end, everything will be alright.

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