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. :)
Thursday, June 28, 2012
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.
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.
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!
Always,
Mommy
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!
Always,
Mommy
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.
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.
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.
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.
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