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)...

1 comment:

  1. This is wonderful...I love your writings. It's one of the only blogs I read...Love ya, Robert

    ReplyDelete