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!