Friday, September 7, 2012

Making Connections

As the at-home mom of two young children I'm usually excited to find a few minutes of alone time here and there.  Between the phone calls, carpools, runny noses, grocery shopping, and five thousand other things that fill my days, an uninterrupted twenty minutes feels like the jackpot - and when that free time magically appears, it is rare that I'm thoughtful enough to use it wisely.

Of late, however, I've been thinking more and more about how I really want to spend my time.  (and I mean - MY time - which, though sparse, is time that I truly have to myself, when my kiddos are otherwise engaged)  When Evelyn was itty bitty, we became connected with a wonderful group of people through the Center for the Visually Impaired.  Through our weekly gatherings we moms (and dads!) were encouraged, supported, and lasting friendships were formed.  There has been nothing before or since that I more eagerly anticipated attending on a regular basis.  Why was this time so special?  Because of the connections.

When we walked into the room, we were just people, brought together by bad news, to be honest.  Each of us was a parent or caregiver to a child with a 'diagnosis'.  Special stuff.  Challenges.  Extra needs.  However you phrase it, it was bad news.  We were there to figure out how to take this beautiful child we had, with their 'bad news', and somehow orchestrate a happy existence.  Doing it alone seemed impossible.  Doing it with a team of family and medical professionals seemed daunting.  The missing pieces?  Friends.

Think about the true friends you've had in your life.  Not the fair weather friends, not the 'frenemies', not the casual acquaintances - but the people you really share your life with.  Now, if you've been through any sort of tragedy or struggle, you might agree with my theory that in those times, you need those true friends more than ever - and that having friends who CAN RELATE to that struggle is a saving grace.  After Evelyn was born we were fortunate to have quite a few friends who drew closer to us, supported us, and continue to be very special people in our lives - but we had no friends who had any experience with what we were dealing with.  As time went on, new people came into our lives through Evelyn - doctors, therapists, and parents of children who have special needs.  Those moms and dads have been so special to us; there is a certain ease when talking to someone who has walked in your shoes - no worries about explaining gtubes or seizures, comparing notes on various pediatric specialists, a greater understanding when plans change at the last minute...

So, I was thinking about this, and about my vast (haha!) quantities of free time, and decided that, through a very special local organization (FOCUS!!!) I am going to host a monthly Share group, for moms of children with special needs.  Our group will meet at my house, and will likely have a lot of parents of medically fragile children in attendance.  Join us on Tuesday, September 25th at 10am - for coffee, baked treats, and good conversation with people who 'get it'.  :)  

Sunday, August 26, 2012

Back in the Saddle

Okay, here is a quick update of the last month or so, since it has been far too long since the last post:

In late July we attended (and helped with!) the Aicardi Syndrome Family Conference in St. Louis, MO.  It was an amazing weekend - my dad and Daniel's parents met us there, and we were able to see so many families that we haven't seen since the last conference.  Our Aicardi family is very close - lots of emailing, facebooking and phone calls happen in between conferences, but nothing compares with face to face interaction.  For that reason, no one sleeps very much, since we're too busy catching up with as many friends as possible.  The bulk of the conference time is spent in various sessions; great opportunities to hear from professionals and share information and encouragement on various topics.  I can't say enough about what a great event it is, and how nice it feels to be 'normal' for a weekend.

Upon our return, we moved quickly into back-to-school mode, gathering paperwork, school supplies and cute outfits to ensure that miss Evelyn was ready for kindergarten.  She was ready.  She was more than ready - she was SO excited to get back to school.  Evelyn got sick in mid-February, and that illness was what ultimately led to her trach surgery in March.  So, when Evs started school a couple of weeks ago, it had been six months since she'd last been there.

I'm happy to report that Evelyn loves kindergarten.  She is a member of two classes:  a special ed kindergarten class where she does all of her 'seat work' and a regular ed kindergarten class where she does morning circle time, centers, and science and social studies.  She has several friends in both classes (and notes in her backpack every day to prove it!) and a wonderful nurse that accompanies her.  Evelyn had a cold last week, as did several other students.  She handled it well, and we're hopeful that she won't be sick too often, although being in school its natural to pick up a few bugs from time to time.

Owen will be starting preschool on Thursday, and we're excited for that - he will have the same teacher he had last year, and many of his friends from his old class as well.  I'm looking forward to having a few hours of alone time a couple days a week, and I know that Owen enjoys the activity and structure of school.  In other news, he is officially potty trained!  For anyone without kids - this is a BIG deal and we are VERY excited!  Owen is really proud of himself, and without going into too much detail I can tell you that we've had a few celebrations this weekend over his accomplishments in the bathroom.  :)

I'm mulling over another post that I hope to write tomorrow....and I'll do my best to put up some new pictures as well.

Saturday, July 28, 2012

Happy Birthday Daniel!

I've been taking the whole 'lazy summer' thing literally when it comes to blogging - and I think that is largely due to the fact that we've had a pretty busy summer.  We haven't done tons of traveling; a long weekend at the lake and an amazing trip to St. Louis for the Aicardi Conference (more on that later!) - but we've done lots of swimming, movies, arts and crafts, and shopping.  (Evelyn likes to shop)

I will be writing a few more posts over the next week on all that stuff, and I'd better do it quickly, since we're already ramping up for the start of school.  Today, however, I'd like to write just a little bit about Daniel.  He's 33 years old today, and you should stop reading now if it annoys you when people brag about their spouses.

Here's a good example of why he's so great:  even before the first cup of coffee, even after a busy night, EVEN if he's been at the hospital with Evelyn all night, not sleeping - he is still kind.  No grouchy words, always ready and willing to jump up and do the next task.  He might be a little groggy, but always kind.  He has been a hard worker since birth, I'd guess, and I think that's where Evelyn gets her work ethic from - but he continues to put his best into everything he does, every day, at work and at home.

Daniel takes being a parent, and a husband, very seriously - but also with a lot of good humor - and we are a better family for it.  A different person would've given up a long time ago - on my imperfections (or sadly, Evelyn's) but that has never been an option for us, and sticking it out when things are tough is something he excels at.  He also has a great sense of perspective.  He's taught me that if being too messy/clean is our greatest conflict, then I should probably not consider it conflict at all.  He's shown me how to be patient; in so many ways in life we have to wait - sometimes for things that never come.  With patience comes a greater appreciation for where we are and what we have right NOW - and this is something Daniel has always exemplified to me.

He's pretty great at what he does.  I think that is because he's great at seeing his strengths and his weaknesses, accepting them, and focusing.  He doesn't dwell in sadness because he isn't good at something, and he doesn't have an ego trip when he excels at something.  He knows who he is, and he's shown me that loving yourself for who you are (hey - who God made you to be) is just as important as trying to be better.  He is a wonderful 'businessman', husband and father.  I see through him that if I am ever only a good mother and wife - then that is the greatest accomplishment I can achieve.

I've always felt fortunate to have Daniel in my life, and I think he's always felt the same for me.  I'm especially grateful that after 12 years of dating and marriage, we still feel the same way.  If you've read any of my previous posts, then you know that life with a medically fragile child (and an occasionally tasmanian devil-ish two year old) isn't always hearts and flowers and fluffy clouds - but I can honestly say, thanks to my husband, that our life is always loving.  always caring.  and we always find the joy and grace in whatever situation we face.

Happy Birthday Daniel - you're still older than me!!!!

Thursday, June 28, 2012

the decapitated doll

In a corner of our entryway lies a small plastic barbie-style tinkerbell doll, who happens to be decapitated.  In the course of an average day, I pass and notice this doll easily five to ten times, and every day, for some reason, I leave it there.  Now, I am not a stellar housekeeper, but I have my standards, and typically picking up toys at the end of the day and relocating them all to the playroom is one of them.  Owen is pretty good about picking up after himself when asked, though since he's related to Daniel, I suspect we'll always be working on tidiness...  :)  Evelyn, given her physical limitations, is pretty neat and tidy herself; and I suspect even if she were more physically able she would still be neat as a pin.  There are little things that just have to get done, like wiping down the kitchen counter tops and keeping dirty dishes washed or in the dishwasher, sweeping every day (too much dog and cat hair this time of year!) and spot cleaning bathrooms...blah blah blah.  I guess what I'm saying is that we don't live in a hovel, and I like for things to be in their place - but something keeps stopping me from picking up this poor decapitated doll.

And here's what I think it is: defiance.  defeat.   celebration?  In my life, and I suspect in many other mom's lives, there is this quiet pressure to be perfect.  Our homes should look like the pages of a pottery barn magazine, our children should be polite, well behaved and occasionally adorably precocious.  Our selves should be fit and strong of mind, body and spirit.  And our to-do lists should be checked off at the end of each day, or week.  Does anyone's life fit that description?  Mine certainly doesn't.  I was talking with another mom a couple of days ago; she is new to the world of special needs and one thing I wanted to tell her, because I have to tell myself over and over again is this:  You can never be everything.  You can never be enough.  The spiritual reason is that only God can complete us, only God is perfect and true and always there, always enough.  The simple truth is that we just can't do it all.  We can try, but if we look closely enough, we'll see that we fail every time.  There will always be a headless barbie doll in a corner somewhere; be it an actual, physical doll, or a long unused toilet in need of cleaning, a friendship in need of mending or a diet that needs starting.

People often tell Daniel and I that we are doing a great job with Evelyn.  We appreciate it, and we mostly believe it.  After all, we both work very hard, giving love, time, energy and money to keep her as healthy, happy and independent as possible.  But the truth is that it only takes a second to think of lots of ways that we've failed her.  Whether its not having her wear her AFOs (ankle-foot orthotics) as frequently as prescribed, missing a dose of medication now and then, or not speaking up when someone says something disparaging about 'children like ours' - we mess up.  The bottom line is that we can't help it; we aren't perfect - and that is such a nice thing to admit and accept.  It gives us permission (and Evelyn definitely benefits) to invite other people to share in her care, to share in her life experience.  Which means that having doctors, nurses, therapists, teachers, family, and friends - who all help us care for, teach and love Evelyn - is okay and actually a wonderful thing.  It gives me room to be Owen's mommy too, and to cook dinner and play with my children, to sweep up piles of dog hair every day and to paint my toenails when I finish this blog post.  It gives Daniel room to snuggle his daughter every night, wrestle with Owen before bed, go to work and do a very good job without worrying about us - it gives us breathing room.  The weight of perfection, especially in relation to our children (which is where it matters most) is off of our shoulders.

I avoid picking up that doll because to me it represents that pressure we feel to be perfect; I'm defying the pottery barn barometer and accepting defeat.  I'm also celebrating that defeat, because I know I'm a pretty good mommy/wife/person - and I'll always try to be better at all of those things - but I'm not setting the bar at perfection, and thank goodness for that.

So, the next time you're at our house, in addition to loving our little people, you're more than welcome to toss the headless barbie doll into the toy box where she belongs, because I'm not planning on picking her up anytime soon.  :)

Monday, June 4, 2012

on a rainy day

I have to apologize for not writing as frequently as I did earlier this spring.  We've had a lot of good days, and a lot of relaxing days.  These quiet, happy times in our life provide me with a lot of gratitude; particularly when compared with the tougher times we've faced this year.  In our community of friends who have a child with Aicardi Syndrome lives have been lost, and there have been many hospitalizations.  Each time another child struggles, we share in that pain, just a little, and sometimes a lot.  One beautiful girl in particular, Ava, went to heaven recently, just missing her sixth birthday.  I saw a lot of her spirit in Evelyn, and really loved her mom's outlook on life and parenting.  When Ava passed, there just wasn't anything I could blog about that didn't seem absurd in the face of such a huge loss.

It is still hard to think of what to write, because I feel somehow that it has to be worthy - if, hopefully many many years from now, I read this post to remember a time with Evelyn, will I be disappointed to have written about something trivial?  I think that's why I haven't had much to say - there isn't much I can say that compares with who my daughter really is, deep inside.  I can't begin to touch that, even if I try.  So, as with life, we will just keep living, and I will try to keep writing - because in enjoying the little things, I hope we are honoring the big things.

On that note, today we went to the library.  Don't take your two year old to the library.  Enough said.

Seriously though, it was a fun day.  We played, we watched movies, Evelyn had her toenails painted, Owen practiced gymnastics in his crib, mommy took a few tylenol....  :)

This weekend we are headed to a lovely house on the lake for a long weekend of peace and quiet and fishing from the dock in the backyard.  Owen will probably contract poison ivy, and Daniel will probably have to be pried from the hot tub every night.  Evelyn and I are plotting some outlet shopping...  I think it is going to be fun.

What we've been up to lately...

Wednesday, May 9, 2012

A Letter to My Daughter

Dear Evelyn,

Today you are five years old.  I should say something like:  "Where has the time gone?" but the reality is that it seems like you've always been here.  I am so proud of the young lady you're becoming.  You are kind to your little brother, patient with Mommy and Daddy, and always a very hard worker.  You try so hard, and no matter what challenges you face, you meet them head on.  After every struggle, you pick back up and keep going, usually joyfully.  I know that you will be amazing in kindergarten; you're ready, and you will love it.

In the last year you have accomplished so many things.  Full days at school, new friends, a new trach, and an even more fully developed personality - complete with an excellent sense of humor.  Speaking of personality, yours really shines right now.  In the last year you've picked up the beloved 'tongue wiggle' which has shown us so much more of who you are and how you think.  For a five-year-old, you certainly know your mind.  From choosing an outfit to telling us what you need medically, you make decisions in a very mature manner.

You've been through a lot in five short years, which is probably why I catch myself thinking you're much older.  I think the strength within you shows in the mature way you handle yourself - so rarely do we see you complain, or cry or have a bad attitude about anything.  I think that your attitude towards life is why, even though from the outside your life seems filled with struggle, we see it as wonderful.  You show us every day how happy you are - and we couldn't be happier to be your parents.

Evelyn, today was YOUR day - and since we just can't help it - there are a few more surprises in store for you over the next few days.  We are so proud of you, and we love you!


Wednesday, May 2, 2012

the beauty of being Broken

We had some friends over for a cookout recently, and I was touched by the interest that a few of the children showed in Evelyn.  She happened to be pretty tired, so she was already in bed when the festivities began, but a couple of children asked to see her, and have asked about her now and then.  I was talking later that weekend with a mom, and we were discussing how to explain certain aspects of Evelyn's condition with children.

In rather amazing timing, Evelyn's vision therapist brought her a gift this week - a special little lamb who happens to have a trach, and who also has her very own book.  Miss Pumpkin Spice the lamb is a medically fragile little girl and her story book gives an excellent introduction to the different limitations and equipment she uses - all while emphasizing Pumpkin's personality and comfort with her situation.

One thing I've been thinking about is that even though Evelyn's situation isn't easily understandable - too many medical terms and complicated explanations - there is one way in which it is very clear.  Evelyn is broken, but she wears her brokenness on the outside, while most of us are broken on the inside.

Everyone struggles.  We just do.  It is part of the human condition, because we simply are not perfect.  Not physically, not mentally and not spiritually.  Some struggle more in one area than in others.  Some wear their struggles on their sleeve, while others' challenges are carefully guarded secrets.  But at the end of the day, there are two simple truths - we are all broken, yet we are all loved.

Loving Evelyn, and accepting her as she is - even embracing her not just in spite of her challenges but FOR her challenges - is a lesson in just how much each of us is loved.  I know that not everyone reading this holds the same faith (particularly in the details) that I do, but I personally believe that there is great comfort in knowing how much we are loved; in spite of and even because of our brokenness.  It is really hard for me to love Aicardi Syndrome; after all, it has caused a lot of pain for my daughter.  And yet...when I think of my life before I knew those words, it pales in comparison to the depth of love and the sincerity of the relationships I share with family and friends now.  It would have been a good life, without AS in our family, but the harsh reality of the syndrome has also brought so much clarity into our lives.  We value our daughter not for who she is, but simply because she is.  I think we're learning to value ourselves and others in the same way.

I guess I have to admit that maybe I do love seizures, and trachs, and breathing treatments, and all the rest - because through experiencing those things with Evelyn, I've felt closer to God's love than at any other time.  And when miss Evelyn surprises us, with her sense of humor or her sassiness - it is magical.  Would I see that magic if it weren't in the midst of so much brokenness?  Would Owen seem so amazing and be so adored?  Perspective matters, and thanks to Evelyn, we've been given the inability to hide from our brokenness, and to feel loved in the midst of it.  What a gift.

Wednesday, April 25, 2012

Peace and Perspective

So,  I'm easily amused - and one thing I find funny is the reaction by a new therapist to my statement that "Evelyn is sleepy today, and she's not going to wake up.".  No one ever believes me, and I mean no one.  I feel guilty lately when it happens because my patience is wearing thin on this topic.  When Evelyn chooses to sleep, it is because her body needs it, and she knows it - so she goes to sleep and will, nearly without fail, remain that way until about thirty minutes before bedtime.

This is hard for people to understand, because most children will go and go and go until they dissolve into a puddle of tears and tantrums (or until someone makes them take a nap - whichever comes first).  I think I should be more sympathetic with those who don't 'get Evs' yet; especially since I do the same thing.  Whether it is emotional overexertion or the work of life, I keep pushing until I find I'm spent - and then I get grouchy, or weepy or downright mean.  It would make sense to just go take a nap; and the adult equivalent would be carving out regular time for myself free of children and responsibilities.  For years my excuse for not doing so was that Evelyn's stuff didn't allow for that, or that I was too tired to orchestrate all the people and things required for me to be away from my kids.  But lately, it was time.

In January we somewhat pessimistically joined a gym, after having exercised at home regularly for a few months.  I say it was with pessimism because I've never enjoyed any form of exercise.  I know that sounds crazy for those of you who have been active all your lives, but even the swim team when I was a kid was just work to me.  It all changed this year, and over the last four months I've spent about 100 hours exercising and lost 15 pounds.  I'm outing myself now - I'm in love with zumba.  I can't even capitalize the 'z' because I'm a little embarrassed - I mean, it isn't long distance running or even something more 'hard core' like P90X or CrossFit... just a bunch of women shaking their booties in the name of a good cardio workout.  Well, I'll tell you this - it is hard work, it is fun, and it is the best therapy I've ever had.  Taking an hour five or six times a week to stop thinking and just exercise has helped me in so many ways...and knowing that working to be healthier is good for me and my children helps assuage the guilt of leaving them to do it.  I even managed to exercise while we were in the hospital (not zumba, the classes didn't work on that schedule) - because I had really learned how much better I feel after.

For my other mommies of special needs kiddos - I don't know if I'll keep it up, from crisis to crisis, but I can say that I don't want to stop.  I think every day about when I'm going to fit it in on the following day, and while there has been an impact to the dust bunnies in the corners of the house - we are all happier.  If you're not doing something for yourself, on a really regular basis - start now.  I don't know how I managed without it for so long; and for me exercise only works because I feel less guilty about that than I would, say, about an art class or book club.  Regardless - if Evelyn knows when to take time for herself, if I'm teaching Owen to take that time, them shouldn't I?

And speaking of the little ones - we have had an absolutely wonderful weekend and early week so far.  The theory coming out of our EEG/hospital visit is that Evelyn's dose of Lamictal is a bit too high.  We've always used a high-ish dose, because it works well for her, but through a series of random events we got just a tad too high.  Immediately upon beginning to reduce her dose she has had some great days.  Saturday we went to a nature preserve, where Evelyn and Owen were able to hold and pet bunnies, ducks and guinea pigs, make bird feeders and animal puppets, and really enjoy being outside.  Evelyn has also slept a bit more, but given the lack of naps these last few weeks I think she needs it.  Monday she took a trip to Target to make a birthday wish list for herself; we don't do big crazy birthdays, but a few gifts are in order.  Tuesday she had a great therapy session with Mr. Ramin and Ms. Rachel - she read a book on her computer and played with her my little pony.  Today she is resting, and reminding us all to slow down, pay attention to what our bodies and souls need, and refuel ourselves.

Sunday, April 15, 2012

the Truth is revealed!

Evelyn is actually Snow White. Daniel made the revelation the other day, and as soon as he said it, all became clear. We have itty bitty birdie eggs tucked into a nest on a wreath on our front door, four adorable baby bunnies snuggled into a nest under our rose bush in the back yard, two cardinals, a robin and various other birds that live in the trees lining our driveway - and that's not counting the dog, cat and occasional lizard that pass through. The creatures of the forest flock to her.

:) In all seriousness, it was pretty neat to find those bunnies this weekend. Daniel noticed them first, and we have some great video of Owen saying 'hi beebee bunnies!' over and over again. They seem to be getting bigger every day, and thanks to Rocky's age-induced failing sense of smell, they seem to be safe in our backyard. On the subject of Owen, he is really cute lately - hearing complete and very descriptive sentences coming out of the mouth of a grubby little boy who isn't even three feet tall - adorable.

We've had a weekend of ups and downs - which isn't dissimilar to the last couple weeks in general. Evelyn seems to be going through a 'rough patch' with her seizures - something that happens about every six months. Often this means some tweaking of medications, and occasionally a night in the hospital. This time, we're seeing some different seizures (milder than normal) and some unusual reactions to her 'extra' seizure meds (sedatives not making her sleepy?). Saturday Evelyn was snoozy in the morning, and feeling very happy and relaxed in the afternoon. She and Daniel had a swing in the hammock, and Evelyn informed us that she'd like to go to the zoo for her birthday. We'll be working on that. :) We spent nearly the entire day outside; bubbles and sidewalk chalk in the morning, a picnic for lunch, and grilling for dinner on the back deck. The weather was beautiful!

Overnight Saturday night we didn't get much sleep - between some equipment quirks that've kept us up and down a lot lately, and Evelyn having a need for diastat it was a busy night. Today as expected she slept most of the day, then woke up in a great mood just a little before bedtime. On the upside, we've seen Evelyn feeling like herself more this weekend than the past two weeks put together - but on the downside things are still not quite right. Usually after a couple weeks we'd be turning a corner on the seizure craziness - but not yet. SO, joy of joys, we're going to go back to the hospital Tuesday for a 24-hour EEG. This means we'll be in the hospital overnight and Evelyn will be connected to a video EEG so we can capture as much information as possible in hopes of finding a solution. Luckily, it is only an overnight stay.

We're trying to keep it all in perspective by remembering that prior to February, Evelyn hadn't had any major medical stuff in nearly two years (and by major I mean more than a couple days in the hospital). Things have been busy (or rather, Evelyn has been sick) since Valentine's day - so we are all ready for some normalcy; or at least our version of normal. We'll get there; hopefully sooner than later! Until then, we'll keep looking for the good in things - even on a bad day there are plenty of bright moments to be had.

Sunday, April 8, 2012

On Suffering

So, today is Easter Sunday (unless you're orthodox, and then it is next Sunday, or so I'm told). At any rate, this past week has not been stellar for miss Evelyn, and as a result Daniel and I have been feeling down as well.

Evelyn has seizures. It just happens, and though we work very closely with her doctors to minimize them, with her syndrome they just don't behave very well. This week Evelyn didn't seem 'right' neurologically. You've read in some of my past posts about how sweet and 'smart' Evelyn is - so when something isn't right we can clearly see it in her eyes and face. It had been nearly two months since she'd had Diastat (her emergency seizure medication) and sometimes we can tell that she 'needs' it (or the seizure that would require it) so that her brain can do a little reboot and move on. Wednesday we decided to give her Diastat, and she slept most of Thursday as a result.

Friday we hoped she would wake up feeling like herself - but unfortunately that didn't happen. She was again 'glitchy' and just not herself. By early Saturday morning she also had a low grade fever and other symptoms of a cold. That, coupled with some crying Friday night was just enough issues for me to feel a trip to the ER was warranted. Primarily I wanted to rule out another bout of pancreatitis and make sure her lungs looked okay. Her labwork was normal, her lungs looked great, and by Saturday evening she looked really good. We now feel that she just has a cold (or perhaps her mommy's allergies) and the seizures were a prelude to the cold that was brewing. So, Hooray! right? well...

In addition to all the worrying, it really hurts sometimes to see Evelyn experience so very much suffering. When she feels good, there is no better example of pure joy and kindness. She loves her little brother all the time - in spite of his bumping, knocking, kicking, shrieking self - and will say so anytime you ask. She is just such a lovely person, with such a lovely spirit. It is always hard to see your children endure challenges; whether they're big or small. It is hard for me to see Owen fall down, or struggle with something. It is heartbreaking to see someone so loving, so kind, so joyful - struggle so often. Usually I'm a glass half full kind of person, but when the struggles pile up, the optimism usually wanes a bit.

I was thinking about that yesterday, and realizing that of Evelyn's five Easters, we've had at least three where she's just not been doing well, and a couple that must've been unremarkable - because I can't really remember them. It can be tough when during those special family times one of your children is absent, or unwell - and today Evelyn slept all day. What I also realized, though, is the very direct parallel between Evelyn's struggles and Jesus' life.

As Christians I think we often talk about the fact that Jesus died for our sins. It is a pretty simple statement, and one I've heard all my life. At this time of year especially, we hear it a lot, and even those who don't share our faith know the story. The truth though, is that Jesus didn't just die. Before he was ever born, his father knew what was in store for him. A life on Earth of being misunderstood, encountering skeptics at every turn, winning some hearts but ultimately dying young, and REALLY suffering through the end of his life. Some of us, who've had difficult pregnancies, have been given the choice to end them. God knew what was in store for his son, and still he sent him. Rest assured, if you've ever made the choice to keep a child, that no matter how hard it seems (for them or for you) it was the right choice. Imagine if God had decided that watching his son suffer would be too hard...

What an incredible comfort to remember that our savior suffered so much for us - more than any of us can really imagine. That he suffered for Evelyn is remarkable, and that she isn't alone in her suffering is a gift that I, as her mother, can never give her. But Jesus did. He knows her pain because he took it upon himself. When we, who have children facing incredible challenges, feel helpless, we can remember that Jesus lived his life on earth enduring many of the same difficulties our children face. People can be very skeptical of Evelyn's intelligence, those who don't know her very well rarely understand her easily, and she suffers far more physically than your average child. She is sometimes persecuted just for being herself - when people see her in a wheelchair, not speaking with her voice or making good eye contact - and assume she has nothing to offer. I think if anyone really understands what it feels like to be Evelyn, it is Jesus. Now, I don't consider Evelyn to be a savior - she's a little girl who, in her own ways, has probably sinned from time to time. I just realized as I was lamenting her suffering, that Jesus didn't just die for us, he SUFFERED for us - and not just at the cross, but throughout his life here on earth. How wonderful, and beautiful, that I can tell Evelyn that no, Jesus didn't have seizures, but YES he does know her pain.

Monday, April 2, 2012

All Together Again

We had a fabulous weekend. Friday evening Daniel and I bought a van. woohoo! I mean, really, when you're ready, you're ready - and there is SO much more space. Saturday morning was a little overcast, so we decided to head up to an outdoor shopping place called the Avenue - Evelyn had a little beauty session at Sweet & Sassy (including a 'diva' hairstyle and sparkly purple nail polish). She really enjoyed it; big smiles and lots of excitement. The stylist was kind enough to give both Evelyn and Owen lollipops and balloons (though none actually made it home) so Owen was happy too.

We then browsed around a few stores, and Evelyn chose a new spring outfit. I tried to find something for Owen, but the sizes weren't working. He did score some bright green shoes later in the weekend though. After some shopping and walking around enjoying the beautiful weather, we had lunch outside to wrap up the outing. Everyone's eyes were bigger than their stomachs, so we all had the leftovers Sunday - but man are the Ted's Buffalo burgers good.

Sunday Evelyn made her joyous return to church, where she was greeted by many of her prayer warriors. That girl is special; and she brings so many wonderful people into our lives. Our church and several friends have been feeding us generously, and I am so appreciative. There is such a peace at our house around 5pm - because I'm not racing around pulling a meal together. :) So thanks again. I keep mentioning it because it is SO great.

Evelyn's afternoons have been a little grouchy; in part because she has SO much energy she isn't napping (but probably should be) and in part because she's having far fewer seizures (awesome!) but the ones she's having she is anticipating for a while prior to having them. So that means she gets anxious and grouchy and twitchy for nearly an hour prior to having a seizure; then she's just grouchy until bedtime. Overall though, I have to say it has been amazing. I really can't quite keep up with her - I'm used to a very sleepy little girl who has maybe six hours of active time per day. Now she's the first one awake in the morning and going strong until bedtime. It is definitely an adjustment we are thrilled to accommodate.

As for Daniel and I, we had a nice afternoon date Sunday; Caro and Jonathan (Auntie RoRo and Uncle Joe) babysat with nurse Ivey. We went for a walk on the Greenway, got some Starbucks, did a little shopping, and each had a 15minute massage (which was wonderful, but too short!). I think we're each having bursts of energy and bursts of exhaustion as we work towards recovering from the hospital stay. I think Evelyn is sort of doing the same thing with the grouchy afternoons... figuring out what 'normal' is now. For the most part, things are pretty much 'business as usual' around here - we have a few housekeeping things on our schedule (yard, deck, painting?) and I'm trying to figure out how to entertain the kiddos during spring break this week. I think lots of time at the park and some Easter crafts will probably cover it. :)

I'm hoping to write a post about our sermon this past Sunday; there is something particularly inspiring and comforting about feeling like your ears, eyes and heart were opened at the right time to receive a message of confirmation. More tomorrow on that.

Thursday, March 29, 2012

Flower Children

So, this morning was one of those mornings when you feel like SuperMom - only to be quickly reminded that you are, in fact, a mere mortal. Owen slept a little later than normal, so everything was going much more smoothly than usual. I managed to shower, dress and have a cup of coffee before any little ones woke up; made Owen scrambled eggs for breakfast, and a little strawberry and banana fruit salad (this is pretty special for a weekday - he usually has yogurt or a bagel). Owen and I talked and giggled through breakfast, and I gave Evelyn her medicine and started her breakfast in bed. She was still asleep, and we usually like to let her sleep in if possible.
Owen continued to be cute, playing and bouncing around the house, and it felt like things were organized and in order. I threw the laundry around and went to check on Evelyn (i always have a monitor with me, but like to pop in and out in the morning so I don't miss her waking up). Well...instead of feeding Evelyn, I fed the bed. For those of you with experience in the special needs world, and with feeding pumps in particular - you know what I mean. For everyone else - there is a machine called a feeding pump that, well, connects to the feeding tube in your tummy and pumps in food - liquid food - often formula not dissimilar to baby formula. It is 'nutritionally complete', but since it isn't meant to be consumed orally, it DOES NOT TASTE OR SMELL NICE. It is SO gross. I might prefer the smell of poop to the smell of formula. Anyways, I apparently didn't connect things quite right, so the pump just slowly pumped all of the formula right into the bed. My lack of skill in this area is yet another motivator to make more Evelyn meals this weekend - no feeding pump required! So, our sweet nurse found me disrobing Evelyn and her bed to get everything cleaned up. The kicker? Evs slept through all the formula trickling onto her pajamas and bed, and woke up smiling as I was cleaning her up.
Well, not to be deterred - sometimes something like feeding the bed would be just enough to turn the day sour - I decided we were in fact going to do plants today as planned. We all got ready, jumped in the car and went to Home Depot. It is one of the closest planty places near us, and is really easy to navigate with a wheelchair. This was Evelyn's first outing since coming home from the hospital, and it really went well. She chose pink, purple, white and blue flowers for our planters (Owen helped!) and we also bought all kinds of vegetables to plant in our garden in the backyard. Then, we came home, ate lunch and started planting.

We did good work, and got a little dirty. :) Of note, is that in these pictures, Evelyn IS awake, and enjoying getting the plants out of their containers and into the soil. In bright sunlight her glasses go into tint mode, and she often doesn't open her eyes as wide because they are a little sensitive to bright light. I'm not sure how much she enjoyed getting dirty, but she had fun. After we finished planting, she decided to doze a little outside in the sun. It really was a beautiful day to be outside.
Thanks to so many kind and generous friends and neighbors, we are getting spoiled with delicious meals - and though I feel a little funny about it sometimes, I can honestly say that it has been so nice to sit down together at the table without having rushed around to pull dinner together - and with less cleanup. It has been an extra little thing that has helped make the transition home easier, and we appreciate it and all of you SO much!
Oh, and in case anyone is wondering why we still have a Christmas-y wreath on our door; the picture at the top shows some teeny little bird eggs nestled in a cozy little nest that is tucked between our wreath and our front door. So until the eggs hatch and the little birdies move along, the wreath stays. :)

Wednesday, March 28, 2012

Give Peas a Chance

Today was our first full day at home in over twenty days. :) Wow. It was pretty much business as usual: Daniel went to work, Owen went to 'school', Nurse Ivey came over and we all just did our thing. That included lots of cuddles for Evelyn and me, groceries, laundry and getting more of these medical supplies organized.

Evelyn was clearly glad to be home, but is still adjusting (understandably) - so while she was wide awake all day, she wasn't always overly cheerful. Not grouchy, per se, just settling in. Owen, on the other hand, was SO joyful. Even his teachers at mother's morning out noticed how much happier he was today. I know he loved being with Pop and CC these last few weeks, but I can also tell that he feels really good about everyone being back at home. Today while he was 'napping' I could hear him through the monitor - listing everyone that lives in our house. :)

While we were in the hospital, spring came to Atlanta, so there is all kinds of stuff to be done! Evelyn's first post-hospital outing is going to be a quick trip to Home Depot tomorrow to choose some flowers for our front door planters, as well as vegetables for the garden. We are also planning some clothes shopping soon - once I take stock of what each kiddo has that fits from last year. This weekend we are planning some kind of family thing; not sure what yet, but we want to get outside and do something fun. Daniel and I are also planning to buy a van in the next week or so, make more (lowfat) Evelyn meals, and go on a date. All these plans - but if Evelyn and Owen are happy, healthy and settled, then its fine if nothing gets done.

My goal is to focus on the task at hand (whatever it may be) and not get overwhelmed with the ginormous to-do list in my head. When we come home from a hospital stay I always feel so happy, relieved, thankful - and then I start to think about all the chores and 'life stuff' that I had blocked out during our stay - and I get really stressed about it all. Here's to hoping I can just live in the moment (and hopefully take a few naps!) these next couple of weeks. I think the title of this post (stolen from Owen's tshirt) is a pretty good message to me (us) - we need to give peace a chance. We should try and overlook all the mess (both literal and metaphorical) and try to just enjoy being a family.

Tuesday, March 27, 2012


Hooray! Evelyn was absolutely thrilled to leave the hospital and jump in the car. All the way home we kind of marveled at how easy her breathing was. Her car seat has always been a problem because it was so tough to keep her head 'just so' - but no worries now! She just relaxed, looked out the window, and smiled all the way home.

This afternoon at home was hectic - in part because our home equipment and nursing companies all had people here organizing things, dropping off tons of stuff, and bustling around to get thing settled. As soon I got one bag unpacked, another would arrive. :) We are completely exhausted, and were SO thankful for the fabulous lasagna Julie dropped off this evening. It is going to take a couple of weeks for the dust to settle - from a sleep, organization and new routines standpoint - but for whatever reason it feels in many ways like Evs has always had a trach. I guess that means we're pretty comfortable with it. :) Y'all, parts of our house look like a hospital - and it probably looks really intimidating from the outside looking in - but after a very short while it all becomes second nature.

Thank you guys for following our hospital journey - for praying and sending good thoughts and supporting us in so many different ways. I hope to keep updating regularly; between Evelyn and Owen there should always be some good material to write about. For now though, it is bedtime!

Sunday, March 25, 2012

Home Stretch!

Another unexciting day - and when you're in the hospital, hoping to go home soon - that is a very very good thing!

I woke up with Owen this morning, and we eschewed church in favor of chasing geese and playing in the sand at the park. I know, I know - but we are really looking forward to going to church next weekend as a family - and Owen and church don't mix, unless he's in the nursery, and sending him to an unfamiliar nursery at his grandparent's church doesn't seem like quality 'mommy-owen' time to me. But anyways, after the park we went to Target to procure, among other things "blue toothpaste!". That means we bought toothpaste that came in a blue box, and may or may not actually be blue. :) Then we went to Dairy Queen, for an exceedingly healthy lunch. Owen's menu: Hot dog (no bun), applesauce, milk, and a mini-blizzard with m&m's. This was basically paradise for Owen.

Daniel watched Evs watch the inside of her eyelids for several hours, and then headed to our house to do more organizing. While we were gone, our friend Martha came to hang with Evelyn - and of course Evs woke up for Martha. :) So they read stories and braided hair and gossiped about boys and such. Apparently she and Evelyn agree that rock climbing is SO not their thing. After Owen went down for his nap I ran over to our house to meet Daniel. Basically we put away clean laundry, steamed Evs carpet (thanks Rocky...), and Daniel put together our new medical cart (a rolling kitchen island in disguise).

When we get home Tuesday with Evelyn, we will have a completely full car - full of junk - but sadly mostly junk we will have to keep - and mostly junk that isn't cute - so we will have to tuck it away here and there so our house doesn't look like a hospital. That's the part of hospital stays that usually does me in; until my mild OCD kicks in and I organize the heck out of it. Then everyone feels better and takes a nap. :) Usually Evelyn takes a nap right away. Honestly I expect we won't see her little eyeballs for a good 36 hours after we get home.

Tonight I've been here with Evelyn, packing away more stuff in hopes of emptying the room enough that we will all actually fit in our car when it is time to go home. Seriously, we were going to buy a van last weekend (been planning it for two years) - got a bit delayed due to this hospital trip - but I'm not totally convinced we won't have to go get one Tues morning in order to get ourselves home. :) I'm kidding. mostly. I think.

Daniel went to his parent's house tonight - and I have a strong feeling that he is now in that euphoric state known as "post smoked ribs consumption heaven". Jerry got a smoker recently - and he uses it well. I'm a little jealous. On the topic of food, two very important things I'm thankful for: 1, I forgot that Maggiano's is less than ten minutes from the hospital and 2, I didn't notice that they have Ben&Jerry's in the cafeteria until tonight. My waistline appreciates my lack of awareness.

Once we're home from the hospital, I think these posts will be shorter and more convoluted, but I plan to keep writing. It has been really therapeutic for me, and fun, and I appreciate having the opportunity to tell whoever is reading a little more about our life, and about our fabulous children.


Friday, March 23, 2012

Counting Down and Rooming In

So, Daniel has the cute Evelyn pics from today on his phone, so unfortunately I can't post them - but maybe when he reads this he will. :)

Including tonight we are down to four nights remaining in the hospital, barring any unforseen circumstances. Evelyn continues to do really well, and is feeling much better. She's even regaining some energy, as evidenced by skipping a nap here and there. I think once we get home she'll probably do a lot of sleeping for a couple of days, and then be ready to hit the ground running. I'm excited to get out into the world and do some fun things with her (and Owen). We are fortunate that, for at least part of the year, our private insurance covers our nurses at home - and in that situation our nurses are allowed to get out and about with Evelyn. So theoretically Evs, her nurse and I can go to the park, go shopping, etc - which will be great. I feel really comfortable handling Evelyn's medical needs - including all the new trach stuff - but when I'm alone with Evs and Owen it can get a little busy, so its nice to have an extra set of hands.

Tonight and tomorrow I am 'rooming in' which means I'm providing all of Evelyn's care, under the supervision of the nurses and respiratory therapists. So far so good. :) It is a good opportunity to practice everything yet again, and it really is nice to feel comfortable with everything before we go home. Tomorrow night Daniel will begin his 24 hour shift - and I'm sure he will do a great job.

I think I can speak for Daniel too when I say that we are SO happy the end is in sight, and SO thankful that this has all gone smoothly, and SO completely exhausted. :) A friend noted that all parents of small children are chronically tired - and she's right - so sleeping in our own beds in a few days is going to be awesome.

Your thoughts and prayers continue to carry us through - we feel like we have a really good life, and that is because so many wonderful people love us, pray for us, and embrace our daughter and our family. So thanks, again, for being such kind and caring people.

A few shout outs:

The NEIGHBORS! Printha, Lucy, Amy - you guys are so sweet to jump in and help with the animals, mail and packages, logistics, cleaning, etc - thank you!

The VISITORS! Thank you, SO much, for coming to see us in the hospital. I hope I'm not leaving anyone out: Jerry, CC, John, Sarah and Sarah's mom, Mary, Alicia, Martha, Jan, Karen, Jacque, Memri, Megan, Megan, Caro, Jonathan, Ivey, Jennifer, Chris, Melissa (and kiddos), Julie, H.L., Elaine... and more I think? Some of you have visited with Evelyn while Daniel or I did training, some of you have visited more than once, and all of you have brightened our days with your friendly faces.

The FRIENDS from afar! Thank you for the cards, letters, packages and love you've sent us; we appreciate you and are thankful to have you in our corner.

The FAMILY! There's not much I can say; you guys are amazing, and we thank God every day for each one of you - including little miss Charlotte and her squishy cheeks - twenty minutes with that little lady was the best remedy for a long day at the hospital.

The HUSBAND! Even when I've only seen you for a grand total of about 5 hours in two weeks, I still love ya. kind of a lot. :)

g'night guys, and thanks again for walking with us.

Thursday, March 22, 2012

My sweet children

So, Owen picked those flowers for Evelyn on a recent trip to the park with CC. He likes to pick all the dandelions, and gives those to any and everybody - but the purple flowers (peepul fliers) are for Evelyn. Owen has been handling this hospital stay much better than one might expect - given that he's in the midst of the terrible twos. In so many ways he is like a first child for us; we've certainly been active parents with Evelyn, but there a lot of issues that need addressing with Owen as he develops that weren't issues with Evs - like climbing the furniture, for example. :) We can tell that Owen is a little stressed by all of this because he kind of lets it all out as soon as I walk in the door - acting out, misbehaving, having a tantrum or two. His worst behavior isn't really too terrible, but it has been a little challenging maintaining discipline while being sensitive to the situation. Luckily we have Pop and CC to learn from, and having Owen stay in one place through this hospitalization gives him some much needed stability. It also helps that he often gets a cookie after lunch - a new routine established by CC. :)
Evelyn has had another great day; she's very gassy (don't tell her I put that on the internet!) but is working on that... Today she spent several hours in her wheelchair - we looked out the window, read some stories, did her hair and just had some mommy and Evelyn time. She also got to try out an HME today - a 'heat moisture exchange' attachment to her trach. It is a little bowtie shaped attachment that does the work of a heater/humidifier, but without tubes, machines or wires. There are filters, and a small chamber that collects condensation from exhalations - so it basically functions as a nose, and is often referred to as such. Her pancreas continues to return to normal, and she started a new lowfat formula today. After we return home, we will make more 'Evelyn meals' that follow a lower fat model (she was on modified Atkins to help with seizures - but we all agreed avoiding pancreatitis was a good reason to stop).
The word 'Tuesday' has been utterd about a zillion times, and we'll be chanting it all weekend - we are all SO ready to go home and start returning to a normal routine. At some point I know that all the pent up stress we're experiencing is going to start leaking out - I'm probably going to cry for no clear reason, snap at my husband, and worry about something completely innocuous with Evelyn - but over the next couple of weeks we'll be back to ourselves. I love my little kiddos, and I will be so glad to get them both under the same roof. Having undivided time with each of them is nice, but leaving one to be with the other isn't easy.
I have to throw this in though - every single day I feel SO fortunate; to spend all day every day just being with my children. When I walk by hospital rooms with little babies all alone, I'm reminded of how lucky we are that I'm not working and can be with Evelyn and Owen when they need me.

A Very Good Day

So, we woke up this morning to all kinds of good things. First and foremost, Evelyn's pancreatic enzyme levels are dropping - which means her pancreatitis is going away! Also of note was that she was clearly feeling LOTS better. She mostly slept this morning, kind of soaking up the 'absence of discomfort' and just recuperating. Also, last night Evelyn spent two hours on a heated trach collar (which means a tube that humidifies and heats the air, but provides no breathing support). Today she did three hours this morning and four hours this evening - and tomorrow she will go all day long with no breathing support! By Friday she should be using a little 'nose' - which is a simpler form of heat and humdification - so she will be wireless again during the day. We will still bring a ventilator home, which we will use at night as a cpap machine - giving her a light but constant flow of air into her trach which will enhance each breath she takes. This is good extra support, and also a nice safety in the event that Evelyn gets sick and needs extra breathing help. Having a ventilator at home, even if we could technically get away with not using it, makes everything safer because it gives a lot of room to help Evelyn if and when she needs it. Also, tomorrow Evelyn will start eating via her gtube again instead of via IV nutrition. Because her enzyme levels are improving we will not have to use a j tube, but we will use a lowfat diet just to be nice to her pancreas for a while.
After a morning of rest for Evelyn and lots of good news, we had a busy afternoon and evening. Evelyn had a few housekeeping issues to attend to, including but not limited to a PICC dressing change (pulling off the tape around her picc line, cleaning the area and replacing the tape) which takes at least 30 minutes, trach tie change, a bath, and getting into her wheelchair for a little while. By the time she got to her wheelchair she was worn out - but she still looks pretty cute. :)
Our ICU doctor agrees with Tuesday as our tentative discharge date, so we are starting to see the light at the end of the tunnel. Hoping tomorrow brings more good pancreatic enzyme levels, more good breathing stuff, and a quiet entry into the weekend.

Tuesday, March 20, 2012

Treat the patient not the numbers.

One of the many things I love about most members of our medical team is their human approach. For many doctors it can be easy to look at and treat symptoms - almost forgetting that those symptoms are attached to a human being. We are fortunate to have specialists who take a more balanced approach.

The pancreatitis craziness is frustrating, and perplexing. Evelyn's enzyme levels are high (bad), but today she was looking much better, and I think I officially saw our first post-surgery smile. We are definitely going to have to take and post pictures tomorrow. Because her labwork wasn't great, a CT scan was ordered to get a good look at her pancreas and rule out any of the 'really really bad stuff'. Thankfully, her pancreas looked normal, as did the rest of her internal organs. Because of that, and because she seems to be doing fairly well, they've decided to start feeding her again - for a few days we will very slowly deliver (via feeding pump) formula (similar to pediasure) into her jejunum, which is the top of the small intestine. Sending the food directly to the intestine will give her pancreas a little more time to rest while working to resume normal intestinal function. After a few days (assuming her labwork improves and she handles it well) we will move to formula in her stomach, then resume a lowfat blended diet, and finally return to her regular food. Some of this process will likely happen after we've come home. I think everyone is hoping the pancreatitis goes away as quickly as it appeared.

As we work through that, we are still working towards Evelyn using her trach with no breathing support. Tonight she spent about two hours with absolutely no assistance, and tomorrow she will do two sessions for a total of four hours. We will ramp that up each day until we go home, and if they feel its appropriate we may work towards no support at night as well. I am officially done with trach training, so other than a family CPR class and a 'rooming in' session - I've done my homework. :) Later this week once our home equipment is delivered, I will spend 24hours providing all of Evelyn's care (mainly trach care) to demonstrate that I know what I'm doing and am capable of continuing her care at home. Daniel will do the same. Luckily I've been mostly doing that the whole time we've been at the hospital, so it will not be a problem. :)

Right now, if things go as planned, we will go home next Tuesday. Hooray! It isn't in our hands, but I really hope we achieve that timing. Today is day 13, so this is officially our longest hospital stay to date. Thankfully there have been a lot of positives during this stay, and while Evelyn and her pancreas have thrown us a curveball, in general things are good, so we are thankful.

Have a great night!

Monday, March 19, 2012

Wake Up and Sing

Well, today was rather uneventful for miss Evelyn. She is still struggling with pancreatitis; which can be pretty painful, so she slept a lot today. Her trach healing and breathing are still going excellently, and we will begin some 'heated trach collar trials' tomorrow - which means that she will spend some time off of cpap, breathing completely and totally independently. It is really a tiny step up from what she's already been doing, but is the next and final step towards 'wirelessness'. If her pancreatic enzymes still look wonky tomorrow then they will do a CT or MRI to get a good look at her pancreas. Due to a lot of air (gas) in her intestines, the ultrasound tech couldn't see her pancreas at all today.

Aside from a Daniel and Kim - led trach change, and more training for us, the only other things of note today were visitors. We continue to have the opportunity to visit with so many wonderful people, and today was no exception. This morning I had a really nice visit with a woman from church, and this afternoon Evelyn had a visit from Memri and Jacque from the Center for the Visually Impaired's BEGIN program.

Ms. Jacque was Evelyn's first vision therapist; she is also a musician, artist, professor at Morehouse, and is THE baby whisperer. Memri is a family counselor, cheerleader, motivator, and has the best dry wit in the south. These two women are both remarkable - when a baby is diagnosed with a vision impairment, and is fortunate enough to be referred to CVI, Memri and Jacque and the staff of the BEGIN program enfold that baby, and family, with love and hope. From one on one vision therapy, counseling for families, and Wake Up and Sing (the most wonderful music group ever) the services they provide are immeasurable - yet magically free of charge. Today Ms. Jacque brought 'little David' (her traveling guitar) and sang some songs for Evelyn, and Memri reminded Evelyn of just how wonderful she is, and how loved. There is a very rich peace and joy that you can't help but feel when you're around these two ladies, and in fact it became a 'must do' every Thursday for Evs and I to come to CVI for Wake Up and Sing - sometimes more for me than for Evelyn.

Having a connection to the Center for the Visually Impaired early in Evelyn's life was so valuable for our family. We met and made some very good friends, learned so many great skills for working and living with Evelyn, and most importantly - we learned that it was okay to be happy. For a while after receiving a tough diagnosis it seems like a betrayal to think about the mundane parts of life - after all, your child has *seizures* or *is developmentally delayed* or *is medically fragile* - and since managing all of that can easily consume your life, you start to think that that is all your life should be about. The simple act of coming to CVI and singing with our baby, talking to other parents and developing relationships reminded us that our lives should revolve around God, not Aicardi Syndrome. It was a place where everyone was dealing with the same kind of 'stuff', so if so-and-so got a haircut, maybe it was okay to think about things like haircuts and toenail polish and (in Daniel's case) GT football again.

I guess what I'm saying is that BEGIN is a very special place, and Jacque and Memri have something very special within them. If you know anyone of any age who is visually impaired, please tell them about CVI - they service people ranging from 0-100 years old (and older!). If you feel so inclined, consider making a donation of money or time; it is a very worthy cause.

Sunday, March 18, 2012

Giving Thanks

Given that it's been eleven days so far, and I think we might be at least a tad more than halfway done with this hospital adventure, and given there isn't anything remarkable to report on today, I'd like to say a ginormous thank you to a few people. Well, okay, more than a few people. :)

The thoughts and prayers of hundreds, possibly thousands - have really touched our hearts and continue to give Daniel, Evelyn, Owen and me energy, hope and strength. There really is great power in prayer, and I believe that that power is in giving those you're praying for the grace and peace to accept God's will.

Our wonderful, dear family. Claudia and Jerry (aka CC and Pop) have given up their empty nest temporarily to host whichever worn out, grouchy, and likely stinky parent walks in the door each night - and Claudia has been loving and caring for Owen all day every day while Daniel is at work and I'm at the hospital. Owen is a sweet little guy, and CC loves him - but chasing a two year old all day is no small feat - and we really are so grateful for her willingness to do so. Her servant's heart is an inspiration.

Aunt Megan and Auntie RoRo - so much energy and positivity and love - you guys keep me going; whether its spending time with one of our little ones so we can 'get stuff done' or just giving encouragment - you guys are awesome. And your husbands are pretty cool too. :)

Our other family near and far - we feel you with us. Thank you.

Our friends and church family. Wow. Whether its a visit, a phone call, an email or a meal - you've inundated us with love and support, and even those little 'likes' on facebook are a reminder that our family is thought of. I am so thankful to know so many wonderful people who are so willing and even eager to step into our world - even when it means hospitals and seizures and potentially scary stuff.

All of you, as I've thought so many times, are the reasons that Evelyn is thriving and joyful. You are the reason our family, in general, succeeds. Alone, just the four of us, we have faith and love and hope - but without you it would be so easy to lose sight of those things. Having you wonderful people in our lives nourishes us in a way we could never do for ourselves. You are extensions of God's grace - we love you, we need you, and we thank you.


Saturday, March 17, 2012

Rollercoaster of Love

*picture created by Will who attends our church with his family - he said he made most of the trees pink and purple because Evelyn always wears those colors. I think Will is a true artist in the making.

When the Red Hot Chili Peppers wrote that song, I doubt they intended for the title to be interpreted the way I'm about to, but oh well.

I think that our love for Evelyn causes us to ride the rollercoaster of life with her - including this hospital stay. On days when she's making good progress, feeling 'better' and looking like her sweet self, we're up. On days when she's not feeling so hot, we're down. Yesterday afternoon and evening were pretty 'down' for Evelyn and me. Evs continues to make great progress with trach healing and breathing independently, and Daniel and I are learning and practicing and feeling good about caring for her properly when we come home. Unfortunately, for no clear reason other than the stress of the surgery and extra medications, Evelyn has developed a mild case of pancreatitis. This is basically an inflammation of the pancreas, and is treated with stomach/bowel rest, and rest in general. It can be pretty painful, and has been bothering Evelyn some periodically throughout the last few days.

Yesterday we moved down to the TICU, and between stomach pain and other tummy issues Evs just didn't seem happy. She also had a lot of trouble sleeping last night; didn't really go to sleep until around 3am and was up again at 6. Because of her other tummy trouble the nurses and I were worried she might've contracted c-diff (a very nasty intestinal bacteria) - luckily she did not. But, prior to learning she was in the clear, Evs and I were both rolling downhill at top speed from all the sleep deprivation and worry (and in Evelyn's case, all the discomfort). It was one of those evenings where you're not very proud of yourself, because you feel so tired and so worried and so, basically, selfish in your fear that you lose all perspective.

The great gift though, is that in the midst of riding this rollercoaster it becomes so clear how steady God's presence is. Our weakness of spirit may cause us to ride the waves of our emotions, but we can rest a little easier knowing there is always a steady hand on our shoulder. I'm not proud of my imperfections, but I'm thankful that sometimes feeling so ridiculously miserable gives me a chance to see God more clearly, and be reassured.

Evelyn has had a better day today, and so have I. Pop and CC visited with Evs while Daniel and I took Owen to lunch and to the park (beautiful weather!), and then Owen and I came back to their house and both napped. Evs hung out with her Daddy, and is still not feeling super fabulous, but slowly the pancreatic enzymes are moving toward the normal range - and as they do so her discomfort should lessen.

Thank you so much to everyone who is praying, and thank you to those who have called or visited as well. It is so nice to see a friendly face walk into your hospital room, and I know it helps Evelyn to feel loved and supported, and to remind her that there is an end to this hospital stay and a life outside waiting for her.

Tomorrow I will be with Owen in the morning, then Auntie RoRo and Aunt Megan will hang with our children while Daniel and I go home to set up new storage for all Evelyn's accessories, and make more meals for her. I will be at the hospital Sunday night and Monday, and I'm looking forward to helping Evelyn get through these next couple days, bugging the doctors to keep us moving in the right direction, and getting one day closer to being at home again.


Thursday, March 15, 2012

Big Progress! and little challenges.

So guess what?!? Evelyn is officially off of ventilator support, and is receiving cpap (air blowing) with each breath she takes on her own. This means that probably within the next 24hours she may well be wireless. :) This also means she's a champ, because this is a 'fast wean' off of the vent.

As with any surgical procedure, the anaesthesia and sedation S L O W down the digestive tract - which means starting it back up can be a challenge. Sweet Evelyn is doing her best to help move things along (to put it delicately) but her tummy really hurts right now. We have a consult with her gastroenterologist set up so we should be able to talk with them sometime this afternoon to take more action. Basically, she's full of gas.

In other news, Evs has been awake all day, and given the gas issue has been in pretty good spirits. Lots of music today, and watching pbs, and receiving gifts from her fan club. :) Her behavior and general demeanor (when awake) have reminded me of just how quickly she's growing up. wow. The only other things of note today have been more training (the checklist is nearly filled, but the preferred teaching pace seems to be extra slow) and I've gotten to put some new skills into use working with Evelyn's trach. I'll repeat, for the millionth time, that this stuff is reassuringly straightforward.

I've gotten some questions about visitors - and yes, please feel free to visit! If you're not a frequent hospital visitor, here are some important points to take note of:
  • visiting hours are 8am to 8:30pm, but most sleepover parents aren't decent until closer to 9am (even though we've been awake since at least 6am)
  • there is always something happening, about to happen, or something has just happened - so expect people to walk in and out of the room - no big deal
  • because of all the hustle and bustle, it is best to limit visits to under an hour
  • call before you come, in case there has been a room change, or a change in the patient's health that might warrant rescheduling the visit
  • the visit itself is the important part; please don't feel any need to bring 'stuff'.
  • for Evelyn specifically, please know that we can't predict when she'll be awake, but if you don't get to see her eyes during your visit, you're welcome to come back - but even if you can't, we will be sure to tell her you came

If you don't have my cell phone number, and want to come visit, just post a comment here on the blog, or email me at Since this blog is public, I'd rather not post my phone number here.

See you soon!


Wednesday, March 14, 2012

Feeling Crabby?

Evelyn continued to do lots of sleeping today, but in the afternoon and early evening she actually woke up! In the picture here, she had *just* kind of a little bit opened her eyes and begun to consider what being really awake might feel like... so as a result she looks a bit, well, crabby. :)

Later in the evening, however, she was wide awake and answering questions and chose a movie to watch, enjoyed a good bath, and chose braids as her hairstyle (at her nurse's urging). When given some choices, Evelyn did not feel 'good' or 'bad', but she did feel 'funny' and 'weird'. She also said that her neck does not 'hurt'. So that's good. She has been awake probably five or six times since mid afternoon, usually for about twenty minutes at a time. She did manage to stay awake for about half of The Princess and the Frog, but she really likes Princess Tiana, so... :)

Evelyn is really a trooper - even though it obviously isn't fun to have surgery, be in the hospital, be all doped up for days, learn how to breathe through a new little hole in your neck, etc - she wasn't fussy when she woke up, she didn't seem scared, she just seemed a little grumpy. I personally would probably be a LOT more than grumpy. I continue to be so thankful that she is able to communicate; seeing her understand as much as she's able to the reasoning behind this surgery and hospital stay, and being able to exert small bits of control like choosing a movie - I know that those things make this experience much more bearable for her. There was a time when Daniel and I felt very skeptical about Evelyn's level of 'cognition' - a long time actually. I know that some reading this haven't really experienced Evelyn's talking firsthand, or have seen her on a bad day, or a sleepy day, and may doubt her ability. Well, all I can tell you is that there is no skepticism in our heads or hearts anymore. In large part, that is because we've seen her respond too well too many times to doubt her. The other factor is that far too many independent professionals have worked with her and seen the same things.

Now, don't get me wrong - I'm not saying Evelyn is a rocket scientist, and I don't have unrealistic or even specific long-term goals for her intellectually - I just know that right now, she is a very typical almost-five-year-old in her mind and in her heart. She knows her shapes, colors, letters and other preschool stuff; she knows how she's feeling and what she wants, she knows who all the people in her life are and how she feels about them, and she understands why she's in the hospital and what she needs to work on to go home.

I'm not sure why this post went in this direction, but I suspect it is because it is hard for people to believe without seeing. It seems easy for many to have faith in God, or in themselves - so why is it sometimes hard to have faith in a child? When someone we love seems not to 'get' Evelyn it hurts; and often it is just a matter of time and circumstance. Evelyn isn't 'in action' all day long every day - she's too medically complicated for that - but she's in there.

The idea of a lack of faith is applicable in so many situations where special needs are concerned. There is a big difference between being in denial and being realistically hopeful - and I believe that the moment I say something is impossible, it becomes unattainable for my child. I was talking to our nurse tonight, because she was asking about Evelyn - and I said that though I would be extremely (and pleasantly) surprised to see Evelyn walk someday, that I would absolutely not say that she never will. It would be a surprising accomplishment for her, given the many physical issues she faces - but if I believe that it will NEVER happen then it won't. We don't live our lives daydreaming about miracles, or imagining Evelyn to be someone she's not - we live very much in reality - watching her have seizures, struggle to breathe, spend way too much time in the hospital. We face the reality of a shortened lifespan, of continued trials and problems, both medical and otherwise, and we face the reality of looks, comments and a gross lack of understanding from the general public. The reality is that Evelyn is super-complicated, and that includes her brain, which is all mixed up structurally, but works just fine for thinking, thankyouverymuch.

I love you guys, and I know that parts of this post seem a little, well, crabby. This blog is intended to keep people informed about how Evelyn is doing day to day - when things are busy and when they're not - but it is also therapeutic for me, and a way to 'say to the world' what I wish Evelyn could say for herself. So, that being said, please don't take the crabbiness personally, because it probably isn't directed at you. :)

Tuesday, March 13, 2012

the waiting is the hardest part

We are SO ready to see Evelyn awake, and short of a few brief blinking episodes, it hasn't happened yet. This is okay, medically, but a little frustrating for all of us since we haven't seen her awake and really happy for at least a week, if not two or three.

Today was busy for Daniel and I, and quiet for Evelyn. Daniel zipped from the hospital to work, and at work from meeting to meeting, then back to the hospital. I woke up with Owen and helped him start his day, spent an hour in rain-delay traffic, gave Evelyn a sponge bath, had a nice visit with a friend, did some trach training (today was cpr with a trach!) had lunch with another friend who works at the hospital, then finally got some Evelyn cuddling in, in between feeding her and learning how the ventilator works and practicing some suctioning. After that I headed home to Pop and CCs house, where my absolutely wonderful mother-in-law fed Owen and me dinner. Then Owen and I took a walk, skyped Daniel and Evs, and he's just gone to bed. Tomorrow I will take Owen to school, then head to the hospital to stay for the day and night.

To be completely honest, this is already getting old, so I have great sympathy for those who've done marathon hospital stays routinely, or even semi-frequently. It is no fun. It is also interesting how much our mood depends upon the moods of our children. For better or worse when they're happy so are we, and when they're not - we're not either.

Today Evelyn was completely weaned off of the sedatives, but given she'd been on them for a few days, and given she's needed a little extra help due to seizure activity, she was still asleep all day today. On the upside, she is beginning to wean off of the ventilator, and the respiratory therapist described her progress as 'excellent' and 'beautiful'. As of 5pm when I left the hospital, the vent was giving her 10 breaths per minute and she was taking an additional 10 on her own. Since the ventilator measures such things, we also know that the breaths she is taking on her own are good strong ones, so that is great news.

I REALLY hope she is awake some tomorrow. Even if she's really grouchy, even if she keeps us hopping all day and night - I'm ready to interact with my daughter, and I'm sure she's ready to move beyond the twilight stage.

A healthy dose of perspective is always readily available at the hospital, and though I've resisted it today (being generally grouchy and self/evelyn-pitying) the truth is that you just can't walk through the hallways without feeling grateful. Grateful for your child's life, grateful for food to eat and a home, grateful for loving and supportive family and friends. Our daughter is surrounded by homemade blankets and special stuffed animals, wears fancy hospital gowns and bows in her hair, and I provide homemade organic food for her - even though she can't taste it - because I feel like its best for her and we can do that. When she needs or wants something, we do it; particularly if it is important for her development. There are families in the hospital who have to share one child's meal tray because there is no money for food. Children who treasure a donated blanket as if it is the most special thing they've ever been given - because it is. Children who are in the hospital because someone in their life, who should have been taking good care of them, hurt them instead. There are parents told every day that their child is going to heaven instead of coming home with them.

In light of these realities, I've typed myself into a much better mood - I'll take another sleepy day, because its another day with Evelyn, and its a step toward a better life for her.

As always, thanks for reading the lengthy ramblings, and for your continued prayers. Also, if you ever have extra money you don't have a place for (wouldn't that be nice! :) ) consider donating to Children's Healthcare of Atlanta at Scottish Rite . It is a very special place, doing amazing things for our daughter and so many others.


Monday, March 12, 2012

Yet another quiet day - for the most part.

Today was probably Evelyn's most restful day thus far. She didn't have many seizures, and just generally rested really peacefully. The only break from that quiet was the 'first trach change' - which went very well. The surgeon felt that the surgical site (aka stoma, aka hole in Evelyn's windpipe) looked just as it should, and the whole process of changing trachs took less than one minute total. After the trach change was over, Evelyn settled right down and went back to sleep. At that point we were officially able to start weaning the sedation, and we were put on the transfer list to move to the TICU. (a cozier section of the hospital)

Honestly, the more I learn the more similarities I see between a trach and a g-tube (feeding tube). Neither device is terribly complicated, and while both provide very valuable and in fact life saving services to my daughter - I think I could probably teach a second grader to properly care for both. Not that I would do that - but suffice it to say that we feel optimistic that we will pass our training.

I think because the trach is revealing itself to be such a simple device, it makes me a little sad that I viewed (and people with them) with such trepidation. It was never a hard decision to do for Evelyn what she needed; including getting a trach - but it was hard to imagine her having one, and the stares and lack of understanding that that would add on top of her wheelchair, feeding tube and obvious physical limitations.

I'm so glad that we've been blogging through all of this, because I don't want anyone that is a part of our life to feel like they're 'in the dark' about who Evelyn really is. I also don't want anyone to feel like they can't talk to us about this stuff, or that they can't ask questions. I thought trachs were scary, because I didn't understand how they worked or how to manage/care for them. They aren't scary to me anymore - though I respect the fact that your airway is a pretty critical area, and plan to ask as many questions and be as hands on as possible in the hospital so that I feel comfortable once we go home - I don't feel intimidated by trachs anymore. I hope that this blog will help eliminate some of the intimidation that some people feel when facing children or adults like Evelyn.

Tomorrow we will probably see a slightly dopey, slightly grumpy, slightly sleepy Evelyn. If she's occasionally also sneezy, bashful and happy then we will have covered most of the seven dwarves... :)