Thursday, November 24, 2011

Giving Thanks IV

On this day of thanks, I wrap up a discussion of some of the things that keep us going in our new life...

Nov. 19. Being self-employed
               Mostly, this started out as a way to not have to pay for day care.  I could work from home and be with Elyse when she was born.  So I opened Linzey Appraisal Associates, LLC in July of 2007, just weeks before Elyse arrived.  Little did I know how important it would become that I have a means of contributing to the household income and still be in control of my schedule.  Anabelle arrived with her own agenda, that includes regular visits with 8 different doctors, weekly visits from 4 different therapists, and the countless hours needed to accomodate phone conversations with insurance companies, medical and equipment supply companies and doctors' offices.  Not to mention the times when we have no nursing, or, God forbid, she should require hospitalization.  It would simply not be possible for us to hold regular 9-5 jobs and properly care for Anabelle's needs.  So, I am very grateful that I already had a business with a small, but reliable set of contacts and humble reputation to keep us going.

Nov. 20. Sushi
               Never failing to cheer me up, always guaranteed to get a friend to accept a lunch date!  On the expensive side, but also a much healthier comfort food that chips or ice cream, I am thankful for the wide variety of sushi vendors available in my area.  Now if only they could figure out how to make a discount sushi that wasn't scary...

Nov. 21. Facebook
               I trepidaciously add this to my list, because, over all, I do agree with my husband that social networking sites are going to be the downfall of modern society.  How many marriages have you seen crumble over it?  How many times have you seen people say things on Facebook that they would NEVER DARE say to your face?  However, that being said, in my new time-sucking life, without Facebook, I would never talk to ANY OF YOU.  I would be so out of touch with what is going on in anyone's life, as I rarely get to see anyone, and phone conversations (unless they are with a doctor's office or insurance company) are a luxury.  It really helps keep the isolation bubble from closing around me when I can spend a few minutes each day and keep up with what's going on "out there", and maybe even exchange a few words with friends (I mean conversation, not the game ;) ).  Facebook has also allowed me to connect with a lot of other special needs families with kids who share Anabelle's conditions and who know what it means to live our life.  They have also helped save her life many times over with suggestions and advice when the doctors have failed.  So while I'm sure that one day, a horse-riding monkey will be standing on a beach staring at the head of a Mark Zuckerburg statue, today, I am thankful for Facebook

Nov. 22. Bunnies
                Anyone who has been to our house is familiar with the family of bunnies who live in our yard.  We are on the 3rd generation now, since we've moved in.  They are not your typical brown wild bunnies.  No, these bunnies are apparently descendant from pet bunnies who were let loose one day long ago.  They are white, black, grey and orange.  They are so docile that many will eat out of your hands, and a few have even gotten so brave as to run up to you and prop their paws up on your leg looking for food whenever you come outside.  The only time Elyse does not argue about eating her carrots is when she can sit outside and share them with the bunnies.  It has been a real treat to watch this bunny family evolve over the past few years.  I will miss them when we have to move.

Grey mommy, white daddy, orange uncle (a littermate of white daddy's) and two orange babies               

Nov. 23. Daddy
                I'm not talking about my own daddy, although I am surely thankful for him as well.  I am talking about the daddy of my daughters, otherwise known as my husband.  Here is a man who grew up with only brothers, playing sports and video games, watching Star Trek and football, reading comic books.  He is now the braider of pony hair, painter of toenails, "best pony-tailer" (and only one allowed to touch Elyse's hair), and purchaser of tiny dress shoes.  And his highly refined contracting skills have now made him designer of sensory play stations, adjuster of wheelchair and master of all medical equipment.  My girls are very lucky to have a daddy who would give up anything to give them the best lives possible

The day "Brian" became "Daddy"

The Hiccup Whisperer: only one who could get rid of baby hiccups with a patented rhythmic back-patting technique

Up all night, building yet another toy

Baby keeper

Daddy and his girls

Nov. 24. Sisters
               I never had a sister, so when I found out I was pregnant with my second girl, I was actually a little upset, because it meant that Elyse was about to engage in a life-long relationship that I had absolutely no basis of understanding for.  I have a wonderful brother, but there has always seemed to be something so mystical about the relationship between sisters.  I was afraid I wouldn't be able to relate to my girls, because such a big part of their life was going to be something I could never fully understand.  As it turns out, of course, that fear was DRASTICALLY UNDERSTATED.  What Elyse was about to experience was so much more unique than I could ever have imagined.  And yet now, I could not be more grateful that my girls are sisters.  That mystical bond is magnified ten-fold in their bond.  Something so special, really unspeakable, exists  between them.  And I truly feel that this bond would not have existed, to this extent, if one of them had been a boy.  Without the magical bond of sisterhood, I don't believe Elyse would ever have adjusted as well as she has to our new life.


So, there it is.  A month-long peek into what keeps me going each day.  The people, places and things that make our new life manageable and let us keep LIVING, instead of just surviving

Friday, November 18, 2011

Giving Thanks III

Another week of gratitude...


Nov. 13. Books
               Books would easily have fallen on any list of things I am thankful for at any point in my life.  But I have a whole new appreciation for them now.  My "me" time, is very, very limited.  I cannot remember the last time I was able to watch a whole movie from start to finish in one sitting.  I may sit down to a television show a few nights a week, but there is very little left on tv that I am willing to spend my precious free time watching.  The bulk of my entertainment falls to books.  They work perfectly for me, because they are meant to be read a little at a time, not all in one sitting, as a movie is intended to be viewed.  I can read a few pages here and a few there, and still feel like I have gotten the whole experience in the end.  Granted, I do not read nearly as many books these days as I once did (usually takes me an average of 3 weeks to get through one, used to read at  least one a week).  And, by the way, keep those Kindle readers and e-books away from me.  I want to hold a book in my hand and turn the pages and smell that dusty old paper smell...

Nov. 14. CADES
                Just a few blocks from my house is a school for special needs people called "Children and Adult Disability and Educational Services" or CADES.  However, it is not the school that I am thankful for, as I don't know too much about it at this point.  It is the playground.  An all-access playground designed for typical and special needs children alike, and open to the community.  Wonderful play equipment + total fence enclosure + padded faux surface = countless hours of playtime with friends.  We have been going to CADES to play since Elyse was a baby.  Every time we go, we see lots of friends from the community, from school, from storytime at the library, from classes we take, everyone is there.  We have had picnics there, birthday parties there, and filled many a free hour.  And another bonus: Elyse and her friends have been sharing this playground with the differently-abled students of the school for their entire lives, so that when Anabelle joined our happy circle, she was not a new phenomenon, and all of our little friends were so much better prepared to take her in stride.  I've heard so many stories from my special needs friends about coming into contact with a kid who was afraid of their child or rude towards their child.  We have really faced none of that so far, thanks in a large part to this wonderful facility right here in our neighborhood.

First ride in the adaptive swing

Hanging with friends

Anabelle hanging with one of her besties, Mia, during a pizza party picnic one warm spring evening

Nov. 15. Naps
               This was the year in which Elyse gave up her afternoon nap.  I held onto it with the skin of my teeth for as long as I could!  I finally had to admit defeat.  And while it does open up the afternoon for activities, and keeps us from being tied down to a schedule, it is not Elyse's naps that I am the most thankful for.  It is MINE!  Few and far between, these days, nothing refreshes me more than getting to crash in the middle of the day.  I do not sleep well at night, but for some reason, always sleep very well during the day.  Anytime I start feeling myself getting a little overly emotional, I know it's time to work another nap into the schedule!

Nov. 16. Stonehenge  
                Ever wish you could just get away from it all?  Well, I actually can!  Thanks to a property in Upstate New York that my parents purchased a few years ago named "Stonehenge."  A totally inappropriate name, as there are no huge rock formations, or even any boulders, really, but the place came with the name.  Not completely isolated, as there is a town about a ten minute drive (half an hour to the nearest hospital, so not un-doable for Anabelle), but far enough back in the woods to give the impression of total isolation, if that's what you are going for.  Enough room for a whole gaggle of friends (or family, as we discovered  when we held a family reunion there a few years back).  No cable, just a tv for watching DVDs on.  There was no internet originally, but that got to be a little TOO much isolation, so there is now crappy dial-up.  Lots of fresh air and wild turkeys!

Anabelle's first trip to Stonehenge

A beautiful view of the river that borders one side of the property

Family game night in the main house

Stonehenge goes Munchkinville

View of the original main house

Nov. 17. Elyse-isms
               Kids say the darndest things!  If there is one thing that has kept the humor in our lives, it is Elyse Mireia.  Yes, sometimes she makes you want to scream and tear at your hair, but her little mind is so unique.  I love watching the way she processes and internalizes the information she gleans from her world.  And when she talks (as she is doing most of the time), it is just AMAZING the things that come out of her mouth!  Some of my favorite Elyse-isms:

Looking up at the starry sky: "Wow, it's like space!"

Elyse has a boy in her class named Caleb.  She calls him "K-Love."  Also, a girl in her class named Audrey.  Elyse calls her "Laundry."

Elyse was diapering one of her dollies, and when she picked it up, the diaper fell to the floor.  She looks at the diaper on the floor and goes, "Seriously?"

Elyse calls her Scooby-Doo fruit snacks, "Scooby-doobies"

When asked by her teacher how the pilgrims came to America, Elyse responds: "On Cauliflower!"

Brian told Elyse to put away one of her dolls that was sitting out. She told him she couldn't because that doll was the night nurse, she needs to watch the other ones. She promised she would just sit there quietly and do her paperwork

Brian asks Elyse to check on Anabelle, so she goes in the other room and yells back "She's dozing!", followed half a second later by, "Oops, I mean, now she's awake. Sorry"

Elyse: "I'm saving all my love for my family. But not, like, robbers and stuff."

I was talking with Elyse about how babies cry a lot and said, "Except your baby, she never cries. She's such a good girl." Elyse says, "Yeah, and she's super brave."

We were behind a truck that had an American flag bumper sticker. Elyse decided that must mean they're hauling American cheese

Elyse thinks "Fur Elise" was written for her, because her name is Elyse and she's four

Elyse's favorite show is "Wipeout."  She calls it "Wifeout"

On the way to Elyse's 4 year check-up, the Rolling Stones, "You Can't Always Get What You Want" is playing on the radio. Elyse goes, "Yup, that guy really knows what he's talking about!"

Elyse: "Daddy, you're super strong, right?" Daddy: "Sure." E: "Strong enough to lift up a car?" D: "No, not quite that strong." E: "So you're not as strong as the Hulk." D: "No." E (in a disappointed voice): "Oh."

When Brian told Elyse that a certain book had been mine when I was a kid, her response was, "Oh, so it's SUPER old!"

Elyse asked me one day when her sissy was going to walk.  I said to her, "Well, you know that your sissy is a little different from some of the other babies you know, right?"  She gets a confused look on her face and says, "No she isn't."

If I were going to pinpoint ONE thing that was really helping us keep it real, it would have to be Elyse



Nov. 18. Lambie
               There are very few traditional toys that Anabelle responds to.  She has central visual impairment, and can really only see light and shadows.  She does not reach for things or grasp things.  Her hearing is great, though, so most of the toys she enjoys the most have some sort of musical or auditory component.  Lambie is one such toy.  He is the actually the Cloud B Sleep Sheep, and he plays a heartbeat, waves, rain and whales. Anabelle is partial to the whales.  By playing Lambie's whale sounds every time we put her in her crib to nap, we have been able to accomplish something that nothing else allowed us to do: sleep train a profoundly impaired child.  Anabelle knows when we settle her into her boppy pillow and place Lambie by her head, it is time to take a sleepy-nap (she may not always agree, but you can see her pause and think about it before deciding if she is going to comply!).  Lambie has also been successful in calming increased agitation.  Highly recommended for all newborns, and older children with the cognitive awareness of a newborn!


One last week of thankfulness, coming soon!

Saturday, November 12, 2011

Giving Thanks II

Picking up where I left off 6 days ago: one more week of thanks...


Nov 7. Hema and Hawa
            For those of you who do not know, "Hema" and "Hawa" are the names Elyse calls my parents.  They were her first attempts at saying "Grandma" and "Grandpa", and so far have stuck.  And my gratitude for having them nearby and in our daily lives is really not a special needs thing, at all.  I have a lot of friends who do not have any parents or in-laws nearby to help them, and I have no idea how they do it.  My parents pick Elyse up from school several days a week so that I can work, take her to activities that I would not be able to get her to, as they would not work for Anabelle, and in general pick up any slack as necessary.  Forget single parenting, I can't even figure out how a TWO parent family raises kids on their own!  I need a whole team!


Nov 8. Anabelle's Eyelashes
             I assume most of you reading this blog are familiar with the world-famous, extra-long eyelashes that Anabelle possesses.  A little secret about them is that, while they are unnaturally long on their own, the fact that she has microcephaly actually enhances the effect, since her head is undersized.  And while they are extremely beautiful to look at, that is not the reason I am including them on this list.  I have found that they are also a good ice breaker.  As you would expect, we get a lot of stares and looksies when we take Anabelle out.  I know this really bothers some of my special needs friends, but it really never bothered me.  I get it.  People are just curious, they wonder about the story behind what they are seeing.  I have found, though, that Anabelle's eyelashes give them an opening to start a conversation.  "Oh my God, look at those eyelashes!", usually followed by, "How old is she?".  Then, if I have a minute to engage in conversation, I will gently turn it towards what I know they REALLY want to ask, which is, "What is wrong with her?"  Any time is a good time to educate someone who is genuinely interested.  So, I am thankful that Anabelle has such a lovely physical attribute that draws people to her.


Nov 9. Orchids
            Beautiful flowers of the tropics!  They bring so much color to my life!  Hardy, yet temperamental.  I can handle something that only needs my attention once a week.  Never can manage to make them bloom again, though, so it makes it easy for my husband to score points at any time by bringing me a new one!  Am planning a large tattoo on my back one day, based on the photo below, taken at Longwood's orchid show, when I have a few extra bucks...


Nov 10. Squeezie Applesauce
            Silly, yes.  But those of you who know my older daughter know what a ridiculously picky eater she is.  I am amazed she has survived this long on chicken nuggets and grilled cheese.  She refuses to eat any vegetables whatsoever, so the rule is that she has to at least eat a fruit with lunch and dinner (and a daily multi-vitamin).  Problem is, she isn't all that crazy about fruit either.  It has been a constant battle in our house twice a day for the past two years, at least.  It makes me miserable.  And I was also concerned, because this year she stays through lunch at preschool, and I wasn't sure she would EVER eat the fruit I packed.  Enter squeezie applesauce.  A genius with a four-year-old's mind thought of a way to make applesauce fun by putting it in a pouch that kids can just squeeze into their mouths.  Wasn't sure if it was going to win her over, but IT DID!!  Now, anytime I am not in the mood for a battle, I just whip out the squeezie applesauce and she slurps it right up.  (On a related note: also thankful for Go-gurt)


Nov 11. A Smile
              Having a non-verbal child is hard.  Any of you who are parents know this from the first 1-2 years of life, when your baby is crying, but cannot tell you why.  It is heart-breaking and frustrating.  With Anabelle, it goes even further: she cannot talk, she cannot point to where it hurts, and she cannot cry.  That's right.  Anabelle has never cried.  No whimpering, no wailing, no moaning.  She can make sound, but it is not connected to communication.  She mostly "talks" to hear herself, we think.  And she will make noise if she hears a lot of people talking around her, or hears Elyse singing.  But she doesn't really make much noise when something is bothering her.  In fact, there is pretty much just ONE thing that Anabelle does that communicates emotion: she smiles.  And BOY does she smile!!  A face-lighting, room-lifting smile!  A pure, innocent, completely joyful smile!  Anyone who sees it just has to laugh!  But her smile is good for so much more.  How do I know when something is not right with her?  When she DOESN'T smile.  See, there are certain things you can do with her that are guaranteed to illicit a smile: brushing her cheek, petting her hair, Elyse singing to her, certain musical toys.  If she does not smile in response to one of these stimuli, then something else is bothering her, and we know to start looking deeper for other symptoms.  How grateful I am for that little smile.  It lets me know that she is enjoying her life, and allows us to make sure she continues to do so.

First smile, at 4 months of age

In case you didn't notice the eyelashes above...

Loving her sensory playmat 

Showing off her new wheelchair stroller

Sissy kissies 

With best bug, glowworm.  Always loves to hear him sing

Nov. 12.  Holiday Decorations
                Or, more specifically, one particular holiday decoration: a fiber optic snowflake.  Sold at Ikea for $5, a battery-operated, white ball of fiber optic strands has turned out to be the best toy Anabelle has ever had.  Just weeks after being told that she was blind to all but the brightest of lights, we caught her looking at this lighted toy and smiling.  Two weeks later, she discovered that she liked the sensation of the fiber optic threads brushing against her hand, and this led to the first incident of purposeful movement that we could all (myself, Brian, nurse, therapists) conclusively agree on.  There have been movements in the past that we thought may be something, but nothing as clear as reaching for this ball.  In the video, you will notice that her head is turned AWAY from the ball as she touches it.  This is actually very typical of visually impaired children, they turn away from the stimulus so that they can concentrate all of their attention on the hand.  I am so thankful for the incredible joy and hope that this little toy has brought into our lives!




Stay tuned for: books, naptime and Stonehenge (intrigued??)

Sunday, November 6, 2011

Giving Thanks

I have been noticing more and more, recently, that whenever I start to feel really down about the direction our life has taken, something pops up to remind me of the countless ways in which we are so blessed.  So, as we approach the day dedicated to giving thanks, I want to share some of the amazing things in our life that have helped us come this far.  This list was started on November 1st, and while I initially intended to publish it ON Thanksgiving Day, I realized I was being a little too effusive, and no one was going to be able to read through 24 of these paragraphs in one sitting.  So I am dividing them into 6 day segments, the LAST of which will be on Thanksgiving.  So, for those of you who are interested, tune in next week for our next installment of GIVING THANKS...

Nov 1. The health of my family
            This may strike some of you as a strange way to begin this list, considering the most common topic of discussion is Anabelle's disabilities, but the truth is, every member of my family is remarkably HEALTHY, most notably Anabelle.  You see, lissencephaly and microcephaly are not ILLNESSES.  They are DISORDERS.  They are disorders that are associated with compromised immune systems and weak lungs.  The leading cause of death in children with lissencephaly is lung failure or pneumonia.  Mostly because they don't know how to cough mucus out of their lungs.  Anabelle has always had a very healthy cough, and the big P has not yet reared its ugly head in our home (as it does so frequently in the home of our friends).  She has required only two short hospital stays post-NICU, both not related to illness, but to other issues with bodily processes.  Elyse has come home with several bad colds from school that have missed Anabelle entirely.  So I say: I am very thankful for the health of all the members of my family



Nov 2. My Good-Time Girls
            Let me first say, if you are NOT one of the three women pictured below, it does NOT mean that your friendship is not treasured.  I am blessed with a seriously obscene amount of dear friends who lift us up and care deeply about our family.  But these three women are the ones who carry the brunt of the weight it takes to keep MOMMY going.  They are the ones who keep me in the real world by not taking no for an answer when they invite me out.  Their children are my daughters' closest circle of friends, a gaggle of giggling girls and one handsome prince.  They are the ones who never, for one second, stopped assuming that everything they did still included me and my family.  They are the ones who rescue me and help me escape when it is just TOO MUCH.  There are friends who have loved me MUCH longer, but none who have become so close in just a few short years as have these three.  I cannot imagine what my life would be like now if Anabelle had been my first child and not Elyse.  It was because of Elyse that I joined a local mother's group and met these soulmates.  Had Anabelle been first, I think it would have been very lonely, and I honestly don't think I would have made it this far with this much sanity still left

   

Nov 3. Anabelle's day nurse, Cindy
            When Anabelle first arrived and we first received her diagnosis, I was SOOOOO angry at God.  What had my precious newborn child ever done to deserve this?  How could He be so cruel?  I am not going to pretend that He and I are now simpatico.  I think that will be a life-long journey for me.  However, if I could pinpoint one moment in time when I realized that he wasn't just tossing us into the wind with this, it was the arrival of Anabelle's nurse.  We had only been home for a day when the nursing company that the hospital set us up with arrived and told us that because of Anabelle's feeding tube, we could get approved for in-home nursing while we worked (40 hours a week), as she could not go to traditional daycare.  We were resistant to it in the beginning, envisioning it to be such an invasion of our space and privacy.  It didn't take long for me to realize, though, that I simply could not take care of Elyse, my house, my business and a special needs child alone.  We reluctantly accepted the nursing.  The very first nurse they sent to us was Cindy.  She was experienced, friendly and kind.  And as time has gone on, she has become absolutely indispensible to us.  Anabelle has NEVER had a single other daytime nurse.  The few times Cindy has had to call out, we do not even allow a sub, simply rearrange our day to cover it ourselves.  She loves and cares for Anabelle like her own, is totally in tune with her moods and behaviors, is the first to realize when something is amiss.  Her careful attention has saved Anabelle's life over and over by identifying UTIs, aspiration, seizure activity, lack of sleep, etc., etc.  She cares for our whole family: offers advice, talks us through trouble, helps us make necessary connections, takes over on the days I can't take any more.  I am sure that she was sent to us to guide us on this journey, and I hope we never have to lose her.


Nov 4. My Garden
            Oh, my lovely vegetable garden!  You gave me so much joy this spring-autumn, providing me with beautiful tomatoes, cucumbers, squash, zucchini, radishes, beets and herbs.  Elyse enjoyed weeding you and plucking your bounty, Brian enjoyed grilling the haul, and baby Belle enjoyed your tasty, pureed, natural goodness.  I cursed the ridiculous October snowfall that abruptly ended your joyous season of giving.  As it is uncertain as to whether we will be able to remain in our home long enough to see you again in the coming year, I will never forget the hours of evening communing we have spent together


 


Nov 5. My Cuisinart Blender          
            A few months ago, I decided that I was not satisfied with the idea of Anabelle subsisting on powdered formula and jarred commercial baby food for the rest of her life.  Since she takes all of her nutrition through her gastronomy tube, all of her sustenance needs to come in the form of liquid or extremely fine puree.  But there just is not enough variety in the pre-packaged baby foods.  And while her doctors have said that the formula contains all of the nutrients she needs to survive, I just cannot accept that surviving on a single food source is the HEALTHIEST way to live.  Our bodies are miraculous machines that were made to process a huge range of fuel.  I truly feel like the closer I can keep her diet to the diet of a typically functioning child, the better her body as a whole will work.  It is a time consuming process, as I have to calculate out an exact calorie count per serving (tube-fed babies can easily become overweight, as they cannot tell you when they are full), cook, puree, freeze into cubes and then bag into serving portions a wide variety of meals for her, but I believe it is totally WORTH IT!  No one will convince me that we do not owe blessing #1 on this list (health), at least in part, to the healthy, natural diet I have been able to prepare with my trusty sidekick.  (I should add that this is in conjunction with two feedings a day of the formula, which IS packed full of vitamins.  I see this as the equivalent of the multi-vitamin I feed Elyse each day).  That being said, I will be kicking this good old pal to the curb as soon as I can afford a Vitamix blender!


Nov 6. Cassidy Noel Linzey
            Our first niece!  You don't know how long we have waited for you!  Until Cassidy arrived this June, my kids were the only ones of their generation on both sides of the family.  Brian and I have 4 brothers among us, but only one is married (Cassidy's daddy).  We also both have a number of cousins that we are close to, several of whom are also married, but so far no little ones.  It is such a comfort to me that Elyse now has more family to go through life with.  She has tons of wonderful friends, and I'm sure will continue to throughout her life, but a cousin is a guaranteed life-long companion.  I sure hope the small brood is added to as the years go on!  In the meantime, we have this adorable cutie to snuggle and spoil!

                  

A sneak peek at next week: Eyelashes, Orchids and Squeezie Applesauce (Oh, that's right)...