I have been asked by other mothers of blind children (we all belong to the same Yahoo message board) if I know WHY Ella was born with bilateral anophthalmia (BA)…born without both of her eyes.  Some families think the reason they had a child born with BA is linked to an environmental toxin the mother was exposed to during pregnancy.  Chemicals from a Teflon frying pan, nearby golf course, apple orchard or nuclear power plant, for example.  There are also many families that have absolutely no idea why their children were born with BA…even after undergoing several tests to try and determine a concrete reason.  After much research, our family story seems to be quite unique…and so I wanted to share it.  It is an on-going story…and by that I hope I mean far from over.  I hope someday I will have new discoveries to share with all of you.  I am forever grateful to my mother’s father, my Grandpa Stanton, for his excellence in maintaining the Genealogy of our family.  Without his articulate collections over many, many years…none of this would be possible.  I love you Grandpa! J 

Five days after Ella was born in Toledo, she was transferred to the University of Michigan Children’s hospital NICU, where we hoped some of the world’s best specialists would help us better understand the extent of her congenital condition.  It was there that Ella’s condition was finally labeled as “isolated”, meaning she did not have any other obvious syndromes, disabilities, or issues that usually accompanied being born with BA.  It appeared that she was simply “just blind.”  During our stay at U of M, we also realized that there were others in our family (on my maternal side) who had been born with various eye-related issues.  My mom and I were asked by a team of Geneticists to draw up a family history of the people we knew were affected.  We knew of at least 5 in addition to Ella, and I will always remember how incredibly giddy the Geneticists became when reading our list…right there in the NICU…directly in front of us.  At the time, I was taken back by their excitement, a little bothered to be honest, that they would have the nerve to display such joy as it so tenderly related to our newly acquired roles as “parents of a blind child.”   

They determined right away that Ella would undergo Genetic testing of three genes that all relate to developmental disorders of the eye.  The genes are SOX2, SIX6 and PAX6.  The tests all came back…negative.  The Geneticists were stunned that Ella did not have any abnormalities in her genes, as it related to her BA.  While this was all going on, my Grandpa Stanton had already decided that Ella’s birth warranted a complete family tree of all those afflicted with blindness and/or other various degrees of abnormal eye structure. He put together an absolutely amazing Heredity chart, complete with descriptions & pictures of all 12 people in my family whose eyes had been affected in some way, dating back to as early as the 1800’s.  Most of the cases include such abnormalities as “heavy” eye lids, small eyes (microphthalmia) or oblong pupils (Coloboma).  There is only one other case of true BA (my mom’s first cousin, John, 53) and one case of unilateral anophthalmia (my first cousin’s son Derek, 4) who was born with only one eye.  We made copies of the chart and shared it with our Ocularist, Ella’s Ocular Plastic Surgeon that removed her cyst, and the Genetics team.   

OK – now I totally get what all of the excitement was about in the NICU that day.  We have been told that being born without your eyes and no other issues is pretty rare.  We have been given several differing statistics on this, so to say that it happens somewhere between 1 in 500,000 to 1 in 1,000,000 live births is accurate enough.   To have a family history like ours is quite certainly what you would call “rare”.  To top it off, the fact that a huge chunk of our family members live within an hour’s drive of U of M and would be willing to be part of a “testing group”…well, then, you have got yourself some extremely giddy Geneticists!  Long story short, there were some grants written and funds available for an Associate Professor of Internal Medicine and Human Genetics at the University of Michigan to conduct a new study on my family.  It is still going on right now – people give blood and get eye examinations, carriers and non-carriers are established, etc.  Research like this is for the truly patient, as collecting from such a large group can take LOTS of time & energy.  But…they believe that there is a yet to be discovered gene that is regulating the eye development in my family.  That is what they are trying to accomplish with this study – make a new discovery.  Thrilling for them, I’ve been told…and I guess I can see why.   

But here is the tricky part for me.  This is my family history.  Not Erik’s…but mine.  When people ask me if I know WHY Ella was born with BA, a totally honest answer could be, “Yes…because I passed it on to her.”  I did.  I did it unknowingly and there is nothing I could have done to prevent it.  But I did it.  It is a proven genetic fact.  I remember, soon after Ella was born, asking Erik, “Do you ever wish that you married someone else, so your first child would have been able to see?”  The second it came out of my mouth I knew I didn’t mean it.  I knew it was just one of those things you say in a moment of total emotional insanity and you don’t really mean.  Of course those of you who know Erik know that when he looked at me and told me that he would not change one thing about our marriage or our first child…he meant it with all of his heart.  And I am blessed way beyond what I deserve to have him as my husband and as Ella’s Daddy.   

I am also blessed to know that in this life there are still absolute truths.  Someone once said to me, “The Bible is either ALL truth or ALL lies – there is no half and half.”  Either you have faith and believe that the Bible is absolute truth – or you don’t.  I choose to believe.  Because of this, and ONLY because of this, am I able to rejoice.  In the book “The Life You’ve Always Wanted” by John Ortberg, he writes, “If we don’t rejoice today, we will not rejoice at all.  If we wait until conditions are perfect, we will still be waiting when we die.  If we are going to rejoice, it must be in this day.  This is the day that the Lord has made.”  Whenever I experience a tinge of blame, or feel myself on the verge of tears over the truth of my situation (and believe me, it does still happen) I remember the words of Proverbs 3:5-6.  “Trust in the Lord with all your heart and do not lean on your own understanding.  In all of your ways acknowledge Him, and He will make your paths straight.”   Sigh…a deep breath…complete peace.  Keep in mind that just because we believe, it does not mean that we don't grieve.  As believers, we still mourn...we just don't mourn like those that have no HOPE. 

I don’t know much about Human Genetics but I trust in God’s plan for my life and I will not question it.  I don’t know much about discovering new genes, but I trust that God wove Ella in my womb and that He knew that she would never see way before she was even born.  I still don’t understand why when I think of the challenges that lie ahead for my daughter, but I trust that God has big plans in store for Ella’s life.  I realize that while I can only see a few pieces of the jigsaw puzzle that is my life, God is the only one who knows what the front of the box looks like. 

It is only because I have faith that I don’t sob to people that the reason Ella is blind is because of ME.  Because of God’s grace, I don’t have to wallow in self pity and guilt over passing on a gene to my daughter that somehow halted the development of her eyes.  Ella is the 23^rd great grandchild of my maternal Grandpa and Grandma, yet I don’t sit and think…why me?  Of all the kids in my family…why was my child chosen to be blind?  I don’t have to waste time agonizing over all the things Ella “could have been” if only she had vision.  Because I trust so fully in God’s grace, I don’t have to live in fear of the great chance we have of this happening again to another child, if we are so blessed to give Ella a sibling in the future.  God knows the desires of our hearts, and He wants to give us what we want.  I would love more than anything to have another child blessed with vision, but I feel comfortable knowing that if it doesn’t happen – we already have the experience of raising one blind child – isn't that all we would need to raise another?

Ecclesiastes 3: 1-8 talks about how there is an appointed time for everything under heaven.  “A time to give birth and a time to die…a time to plant and a time to uproot…a time to tear down and a time to build…a time to weep and a time to laugh…a time to mourn and a time to dance…” 

We have made a conscious choice in our family that Ella’s birth and her life definitely calls for some serious dancing.  We will inadvertently bump into things, possibly get really dizzy or even fall flat on our faces.  But the important thing is…we have decided to rejoice!  And because of this, we will get right back up…and keep on dancing. 

 GO BLUE!!

   It has been awhile since I have had the time (or clear enough thoughts!) to update this site as a nasty little virus has been running rampant in our house since Halloween.  I cringe to even bring it up now, as we are finally starting to regain some normalcy in our lives and I plan to block the last two weeks out of my mind forever!  Plus, chances are we all got sick from something we picked up on our trip to Cabo San Lucas, Mexico and I am determined NOT to be afraid to go back to that beautiful, relaxing, warm place again – so let’s just forget we were all so sick, OK?  Let’s forget that we all spent Halloween night in the fetal position on our couch, moaning on about our aches, pains and levels of nausea.  Let’s forget that Erik and I traded several forearm shivers in the hallway as we raced each other to the bathroom.  And let’s just say we were not in a race to brush our teeth.  Let’s just forget that poor Ella, who got it MUCH worse than us, had to spend three days in the hospital after becoming severely dehydrated and losing two pounds in three days.  (For a girl who is only 18.5 pounds to begin with – well, that’s just not good for anybody)  Let’s forget that we nearly consumed our individual weights in popsicles.  Ugh.  Let’s also forget the infinite loads of laundry we had to do as Ella easily went through five outfits and a new bed sheet everyday for ten days.  Hey, if you have seen her closet, you know the girl does not lack for outfits, but please – the mere scent of Dreft and I still tremble just a little bit.  Oh, right…we are forgetting all of that.  OK…   

  Despite our woes upon returning home, our little respite in Mexico was absolutely wonderful!  Erik, Ella and I met Erik’s parents, Greg and Joan, down in Cabo and we all stayed at G & J’s timeshare at the Pueblo Bonito Sunset Beach Resort.  This was our third time staying there – and the first time we brought Ella with us “south of the border!”  The weather was, hands down, the BEST we have ever had.  It had to be 85-90 and sunny each and every day we were there.  Simply gorgeous.  The perfect combination of warmth and breeze coming off of the Pacific Ocean.  Ella did so much better than any of us expected; actually, she probably enjoyed herself the most of all of us.  The first time we took her down by the beach, she giggled uncontrollably as she tried to “catch” the breeze with her little hands.  With the wind in her hair and the sun on her face, she seemed more alive than I have ever remembered seeing her before.  She loved being down by the pool all day, swimming when she felt like it and napping comfortably in the cabana when she needed a break.  Greg (G.Pa) took her on a long stroller walk every day around naptime and sat with her at their special place he named “23 Palms” as she softly snoozed the afternoon away, or sat up happily listening to the birds and the pounding surf.  Some evenings we chose to get ready and go out to dinner in town and other nights we just hung out in our room and ordered in.  Ella had such a perfect “go with the flow” attitude all week – we were all constantly surprised how easily she adapted to her unfamiliar surroundings.  I now know she is a true “beach bum” at heart!!   What an incredible time of rest, relaxation, and refreshment.  (And I’m not just taking about “Happy hour!”)  Thanks, Greg and Joan, for getting us down there and for such a special week together!!  We will be back – we are NOT afraid – we promise! J  

This morning, I found myself submerged in an exceptional peace exclusive only to those that wake up feeling extremely blessed.  Today my heart overflows with thankfulness.  I am thankful that God chose Erik for me, and that He knew Erik was the missing piece that would ultimately complete the puzzle of my life.  I am thankful for Erik’s never ending patience, his complete love for Ella and me, and for his strong, yet quiet & gentle spirit.  I am thankful that I get to be Ella’s mommy.  What a tremendous joy and awesome responsibility!  I am thankful that I get to stay home with her, and not miss one second of her precious growth & development.  These are truly cherished days for us.  I am thankful that Ella is spunky, sassy and sweet…all at the same time.  I am thankful that she knows both sets of her grandparents and that the four of them love her with a special kind of love only a grandparent can give.  I am thankful that she has Aunts and Uncles and a cousin that will all help teach her how to be very “cool.”  I am thankful that Ella still sleeps sometimes until 11:00 am, so I can venture downstairs to sip coffee & capture the morning sunlight filter through the windows of this old house that I love so much.  Even though this place has all of the nuances of a 90 year old house, it is bursting at the seams with character and we have made it our HOME.  I am thankful that it is finally FALL outside, my very favorite time of the year.  I am thankful for pumpkin flavored anything (especially pumpkin cheesecake at Cheesecake Factory), the smell of hot cider on the stove and the sound of crisp leaves crunching beneath my feet.  I am thankful for all of our great friends & family – those that live close and those that are far, far away from us in distance…but always close in our hearts.   

Friends & Family.  Erik, Ella and I have some of the very BEST.  All of these people love our Ella and have been by our side through all of the ups and downs we’ve experienced since her birth.  They have let us cry on their shoulders, shared many excellent words of encouragement and picked us up when we had fallen down with grief.  For all of this we are extremely thankful. 

With all that said…imagine this scenario with me.  Imagine meeting other people who knew exactly what to say to you because they had been through almost exactly what you are going through right now.  People who researched the same condition you researched – learned how to spell it, pronounce it & eventually accept it as part of your daughter’s life.  People that shared your same agony and devastation, ached your same aches over the fact that your firstborn child would never lay eyes upon your face, never visually experience all of the beautiful things this extremely sight-oriented world has to offer.  People who share your intimate knowledge of Ocularists, conformers, prosthetics & eye ointment.  Imagine meeting people that you could vent your feelings to and whether they said something great, or nothing at all…they totally understood how you felt – because they have felt almost the exact same way.  Imagine meeting people that just smile when your little girl throws a tantrum for no reason, harkening back to the very same frustration their little girl felt before she could communicate her feelings verbally.  Imagine this for a minute…doesn’t it sound marvelous??  

I am happy to say that we are finally done imagining!!  We experienced such a meeting this past weekend, as we spent time with our new friends Megan & Bobby and their daughter Ava, who turns 3 in February.  I felt an instant connection to Megan ever since the very first time we spoke via e-mail.  We met 9 months ago on a private Yahoo message board, exclusive to parents of blind children.  We began to e-mail quite a bit, sharing stories and getting to know each other via the wonderful waves of the cyber universe.  We immediately had a lot in common.  Both of our girls were born with an isolated condition of bilateral anophthalmia.  Both are our firstborn & only children (although Ava will have a baby sister in December!!), and they are only 1 ½ years apart.  There are several members on the Yahoo board, but Megan stood out from the pack as a kind of “mentor” for me.  Someone who has traveled down the path I was on before me, she often left bits of insight and encouragement along the way to help me navigate my route a little easier.  I appreciated her honesty, her empathy for me and the fierce love she has for her family, especially her sweet Ava.  Conversation came very easy for us.  It was obvious we would be fast friends.  I was so excited when we decided to get our families together & finally meet in person.  How can you put into words how you feel about someone that you hardly know, yet so many aspects of your lives are so similar that you feel like you could have been “separated at birth?”  That is how I phrased it for Erik on our drive home.  Megan and I could have been “separated at birth”  

Needless to say our weekend was all that I hoped it would be…and more!!  It was wonderful and comfortable and easy and FUN!!  The girls played so well together on the floor of our hotel room, rolling balls back and forth and giggling like only little girls can.  Every time Ella started to fuss, Ava said, “Ella’s funny!”, making us all laugh.  Erik & Bobby were happy to talk sports as they watched college football and played with the girls.  (Here is how I knew that Bobby was as big a sports fan as Erik.  The 6 of us were eating dinner at the Cheesecake Factory on Saturday night in this big round booth.  There were little square mirrors above our heads & at one point Bobby was staring right over Ella’s head for a few minutes.  I finally figured out that he was trying to watch the end of the LSU/Kentucky game – backwards through the mirror – on the TV that was in the bar across the restaurant.  Big smile J It made me feel right at home.)  Megan and I could have talked…and talked…and talked…for a very long time – Starbucks in hand!!  Erik and I loved sharing stories and talking about the joys and challenges of raising a blind child with them.  We totally “got” each other.  We laughed, ate yummy food, hugged and sang to our girls, and enjoyed the warm breeze of an early fall day in Cleveland.  As much as Megan feels that for them, watching Ella was like watching Ava a year and a half ago…it was just as significant for us to watch Ava walk around, talking up a storm and communicating so well.  I had always cherished Ava’s stories and pictures as a little glimpse into what our future with Ella might bring. 

So, even though I started writing this yesterday, I am still relishing my blessings today.

Thank you Megan, for being like a mother “mentor” to me.  You don’t know the huge part you have played in my life the past 9 months even though we have only met once!  Thank you  Bobby & Erik, for being such amazing Daddies to two very lucky girls.  Thank you sweet Ava P., for your kind spirit, for playing so nice with Ella and for giving me such a big kiss when we said goodbye!  Thank you beautiful Ella, for all of the imprints you have left on my heart in your 16 months of life. 

I really like that quote that says, “There are only two lasting things we can hope to give our children. One is roots; the other, wings.”  I like its simple truth.  As Ella prepares to turn 16 months old on October 23, we are deep into the “rooting” phase on a daily basis.  We are praying that they are good, substantial roots that will help her navigate her way through this world.  I will tell you though, there are some days that girl acts like she is expecting her wings already!!  Ella’s personality is BIG…and it is shining through lately in some very sweet and often comical ways.  Take yesterday afternoon for example.  We found out recently that Ella needs her own passport for our upcoming trip to Mexico.  We had to visit the Post Office to file some paperwork and get Ella’s passport photos taken.  We took her into the back room where the camera and a little stool were set up.  Erik sat Ella on the stool and we explained to the nice man helping us that Ella was blind, but that we would try to get her to put her “chin up” for the photo.  She understands “chin up” very well, as we had to teach her this months ago when she was learning to eat solid foods.  Back to the photo shoot…I said, “OK honey…chin up!” and do you know happened next?  Ella jammed her chin DOWN into her shirt so hard and giggled this defiant little cackle as if to say, “No one can make me do anything!!!”  The man attempting to take her picture was saying, “Up here, Up here” but she kept her little chin tucked in and would not stop laughing.  I almost got a little giddy myself.  Apparently it is crucial to get a full frontal face shot for your passport photos.  Yes, even if you are only a 16 month old kid.  Time to pull out the big guns.  “Ella, after this do you want to get some ICE CREAM?”  Her little head popped up and she gave a big smile just in time to snap a quick shot that we think will work out fine.  That girl knew exactly what she was doing!! 

Another example:  I take her to this play group at the Early Intervention Center which consists mostly of non-walking babies, many whom were either premature, have one or many disabilities, or both.  It is every Tuesday for an hour and a half.  After several visits to play group which all ended with me having to haul her little, wailing butt home early as sweat dripped down my face from my attempts at claming her down (really, how much ICE CREAM can you promise a child?), I am happy to report that Ella finally enjoys this group.  It is a great time for me as well.  I have become friends with many of the other moms and I look forward to seeing everyone each week.  The other kids in the group seem to be fascinated by Ella and how often she used to just throw fits for no apparent reason.  They seemed surprised when we stayed past the halfway mark a couple of weeks ago, looking at me as if to say, “Isn’t it time for you two to be leaving now?”  This past Tuesday Ella was on her best behavior by far.  She sat on the carpet and played with the shakers, the little piano and this crazy plastic apple that makes a noise she absolutely loves!  The other kids were amazed.  They kept watching her, like they were waiting at any minute for her to turn back into “evil” Ella.  When she didn’t, they slowly approached her.  First was Miss Mia Sophia, this sweet little Spanish girl who just started walking.  She waddled over to Ella, took Ella’s pacifier out of her mouth and popped it into her own.  She moved so fast I had no time to stop her.  Then she popped it back out and shoved it back into Ella’s mouth before I could even blink.  She rubbed Ella’s arm and said, “Amiga, Amiga.” (friend) Ella just sat there and enjoyed the feeling of little fingers on her arm.  It was so darn cute.  I was still trying to figure out if I should thank Mia for cleansing Ella’s pacifier for me.  I said, “Gracias” and she smiled and waddled back to her mom.  Next came the twins, Joey and Jenna.  They tag-teamed Ella and both reached out to touch her.  I am not sure if they overwhelmed her or what, but she promptly turned her back on them and kept on playing.  It was like she just needed a “minute” to herself.  A very smug move on her part, I will admit.  Joey and Jenna did not take offense, thank God.  They crawled back to their mom with smiles on their faces.  Next came little Kevin.  He had a magazine in his hand that he really wanted to give to Ella for some reason.  He waved it in front of her face and waited for her to grab it.  When she didn’t, he placed it in her lap and opened it to the first page, as if to say, “Here you go.  I set it all up for you.”  She flipped through it for a bit and then started ripping it to shreds.  (One of her favorite activities!)  Kevin clapped and cheered her on as she ripped.  I totally love watching her interact with all of these kids.  Children at this age are so sweet and accepting…and that does a lot of good for my soul J

Here are some other things that Ella is currently amazing us with:  She learns extremely quickly.  You tell her where something is once and she will remember it.  (ex:  the gear shift on her toy car.  Thanks Joe & Kelley for that car – it is her favorite!)  Ella now says these words:  Papa, Mama, Daddy, Nana, yeah, bath, hi and up.  She will point to the following body parts:  hair, belly, nose, eyes, teeth, knees, piggy toes, ears, and now…buttcheeks.  (Thank-you Daddy!)  She lifts her arms for “Arms up”, will clap on command and plays peek-a-boo by putting her hands over her prosthetic eyes.  She will sign for “more” when eating and just recently learned the sign for “all done.”  She feeds herself most things, but still is spoon or fork fed by us.  If we hand her a spoon full of anything, she just tries to comb her hair with it.  Nice.  She absolutely LOVES being in the bathtub and when I pull the plug to drain the water she waves “bye-bye” with her left hand, surely thinking “I will meet you back here tomorrow. Same time, same place.”  She has been rolling a ball back and forth for a little while now and Daddy taught her to kick the ball the other night.  (Thank you Aunt Carole for Ella’s musical soccer ball!) It is official – she already has more athletic skills than I ever did.  Ella has never crawled, and is still not walking on her own yet.  (we are getting her some private therapy to help with this)  She will take steps if you hold her hands, or she will walk along the coffee table or the couch by herself.  She scooches on her behind to get places, using both hands to push the floor.  She is starting to pull herself up on EVERYTHING and has learned to stand on her own in her crib.  When riding her toy car around the house, she will only go backwards and has learned to maneuver herself out of corners or away from walls and bookshelves.  (as she drives by, she knocks books off of the shelf and laughs!) We must revisit our baby proofing plan for this house!!  Ella explores everything with her hands and fingers.  She taps things to figure out what they are and totally enjoys buttons, keyboards and her Braille books.  Her little hands will shake and her toes will go in circles when she is really excited about something.  Even if her face seems to tell a different story, as long as those toes are circling, she is one happy camper.  Ella hears EVERYTHING.  I don’t believe that people who have a sensory impairment are given super sonic powers in their other senses.  I just believe that they use their other senses so differently; it appears that they are stronger in some way.  Ella listens intently to most all music, and she recognizes her favorite songs after only a few bars. 

Ella takes it all in…lives fully in every moment.  I have been inspired by her lately to really start living more in the moment myself.  Making the most of the time we are given on this earth.  Just last night as I was washing dishes, I decided to light this great candle that Erik’s mom gave me.  I would normally have saved it for a “special occasion” like the holidays or having guests over.  Not anymore!!  The delicious aroma of Baltic Amber surrounded me and I will admit that was the most enjoyable sink of dishes I have ever done.  (Thanks Joan – the candle is fabulous!)  Thank you, sweet Ella, for opening my eyes to the fact that the present really is a “gift.”  I am so blessed by the lessons that Ella teaches me.  I’m not quite ready to give the girl her wings yet, so we will keep working on her root system for awhile.  I have no doubt that she will let us know when she is ready to fly J

Ella is blessed beyond belief to have awesome people in her life that love her unconditionally.  People that accept her for who she is and celebrate her milestones and accomplishments right along with us, hands clapping, shouting, “Yes, Ella!  You can do it!”  Of course the list begins with family, then branches off into friends and other special people in our lives.  The list is long…and I take comfort in the fact that these precious ones are and always will help to shape Ella’s life.  Each in their own special way.  Our “forever” support system.  What an amazing, wonderful, powerful thing to have surrounding you.  Our cups runneth over continually. 

One of these extraordinary people is Ella’s Aunt Becky (Aunt B, for short!).  Becky is my only sister, younger than me by 3 years, and my best friend & ally by far and wide.  She is REAL.  She is FUN.  You tell her stuff and she just “gets it.”  She laughs and loves with everything she has inside of her and her servant’s heart shines through in all she does.  She is an excellent example of a wife, mother and friend just trying to follow God’s plan for her life – through all of the trials and triumphs.  What you see is what you get with Becky.  She is open, honest and has one of the best cackle laughs that you will ever hear in your life.  All of these things are undeniable after spending five minutes with Becky.  However, Ella is especially fortunate to benefit from her Aunt B for reasons that are not as obvious to people.  Becky’s quiet strength comes from a much deeper place in her soul.  A place where her faith was challenged, her resolve questioned, her autonomy broken, and her patience was put to the test.    

In December of 1997, Becky’s junior year in high school, she was sledding with some friends at a nearby Quarry when the sled she was on veered off course and hit a tree at the bottom of the hill.  Becky’s friends found her slumped over near the tree, moaning and in such severe pain she was almost numb.  No one had a cell phone.  Walking to the nearest phone would take over 15 minutes.  Her friends acted quickly and efficiently log-rolled her back onto the sled, careful not to move her too much in the process.  They slid her in the back of the mini-van and drove to one of their houses where they called the Paramedics.  She was strapped to the wooden EMT board and wore a neck brace in the ambulance, where she did not have feeling in her limbs and was having difficulty talking.  We stayed the entire night by her bedside, and she gripped our hands and squeezed as the pain came in waves.  The next morning, the Doctor gathered us around and explained that Becky had suffered a burst fracture of her #2 lumbar vertebrae.  The impact of her hitting the tree had sent bits and pieces of her bone flying and they were extremely close to her spinal chord.  He took a deep breath and paused before telling us that Becky had been less than one half inch from being paralyzed from the chest down for the rest of her life.  Because of how carefully her friends had moved her, they had truly saved her from paralysis.  A surgery would be much too risky, so the only option she had was to be placed in a full body cast for three months, possibly more.  They hoped she would make a full recovery and eventually walk again – but there were so many questions.  He looked down at her and said “You’ve got to be the luckiest girl alive” to which she responded, “It’s not luck – I’m just blessed.”    

My mom and I were asked to be in the casting room as they lifted Becky’s frail body with a system of ropes and pulleys to apply the cast.  She screamed and cried out to us, and we were helpless to ease her suffering.  It was and continues to be one of the most painful moments I have witnessed in my life.  Two weeks later and five days before Christmas, an ambulance brought Becky home where we had transformed the dining room into her new room for the next several months.  We taped each and every card or letter she received to the walls so she was surrounded by the love of her family and friends.  She was placed on the hospital bed we rented and smiled…so glad to finally be home again.  

   For three months, my mom took time off of work to become Becky’s “nurse” and my dad and I helped as much as we could.  She had to lie totally flat the entire time.  We could not even prop her head up at all…she just rolled from side to side when we bathed her or needed to change her sheets.  Did I mention that it was THREE months?  That’s 90 days.  2160 hours.  129,600 minutes.  Lying flat on your back.  Wrapped in a full body cast and dependant on others for everything from scratching your "hard to reach" itches to going to the bathroom.  Your freedom?  Gone.  Yet Becky continued to be Becky and on many occasions even lifted my spirits after I had a bad day at school or work.  I would come into the house, all irritated about something that did not go my way and Becky would smile at me and with total concern, ask me if I had had a tough day.

After some at home X-rays were taken in March, the Dr. felt she was ready to get up and try to stand.  We slowly helped her to her feet for the first time in over three months and she stood up.  We cried and cheered and slapped each other high fives.  It was one of the best moments of my life.  Becky wore a walking cast for a long time after that, followed by a brace which she wore without hesitation under her dress at the Prom that spring.  She persevered through an extremely tough time, and not too long after Prom was pronounced as having made a “full recovery.”  The things we learned from each other as a family during that time are unmatched, yet Becky herself taught us the most important lesson of all.  If you are going to be in the same position for three months, it might as well be on your back because then the only way you can look is UP. 

Aunt B - you are our hero.  We love you so much

 “How a person masters his fate is more important than what his fate is.”     Wilhelm von Humboldt

Pet Peeves.  I will, with slight embarassment, mention the two that top my list.  One:  People who continue to sit in their cars in front of the ATM machine after their transaction is complete.  I know their transaction is complete because I have witnessed them take their cash, receipt and card.  I know what they are doing.  They are getting their little billfolds in order.  I totally understand this.  Really I do...I like to be organized too.  But c'mon people.  You totally see me behind you, boring a hole into the back of your head with that "You have got to be kidding me" look on my face.  Just pull up and pull off to the side, and organize your little billfolds there so I can have my turn with the ATM machine.  Seriously, the second that box spits out your cash, you need to be moving out of the way.  Unless of course, no one is behind you.  This is the ONLY time it is OK to continue sitting there while organizing your stuff.  But...If I am behind you and you look down or hesitate for one second too long after getting your money, I will lay my entire body on the horn and even gesture out my window for you to "move along."  I won't really do that, of course, because I am chicken.  But I will want to.  Really bad.  Two:  People who continue to run their windshield wipers when it has obviously stopped raining.  For those who are wondering, this only bothers me when I am IN THE SAME CAR with them.  I know that some people are just oblivious and don't even realize that they are still running.  Not an excuse.  The screeching sound they make on the semi-wet, semi-dry windshield is worse than nails on a chalkboard and makes me want to pull my hair out strand by strand.  Don't make me reach out and break your windshield wiper thingy right off the steering wheel.  Seriously...don't tempt me.  I'll do it.  Not really.  But I'll want to.

I jokingly write about Pet peeves because since Ella was born I seem to have a new one quickly rising to the top of my list.  It is people who say "I'm sorry" immediately upon hearing that Ella was born blind.  Listen, I know that this is an easy default response and that most people just simply don't know what else to say to me.  I can't change the fact that it really bothers me...but I have learned better ways to deal with it.  Now I say, "Jeez, you know, you really have nothing to be sorry about!  She is happy and healthy and I don't feel sorry about a thing.  Neither should you!"   

I bring this up because today I took Ella to a wonderful music class that I think we are going to enroll her in.  As I was driving her to the studio this morning, I was thinking about the onslaught of "I'm sorry's" I would most certainly get from this group of strangers we would be meeting for the first time.  I was feeling frustrated already and we were not even halfway there.  Then...like magic...a farmiliar song came on the radio.  This is a song that our MAPS group moms had been recently talking about and that everyone seems to agree is like the "theme song" for our kids.  It is called "Wonder" by Natalie Merchant.  There is a line that says "know this child will be gifted with love, with patience and with faith...she'll make her way."  I felt such a wave of comfort wash over me as I realized that worrying about what people might say about Ella is so ridiculous.  She is totally "one of the wonders of God's own creation" and I am currently working hard to remove this pet peeve off my list.  It will take some time.  But you know what?  We loved the music class.  It was fun and Ella laughed & clapped (not until the last 5 minutes!)  And you know what else?  I did not get one single "I'm sorry."  I worried for nothing.  I'm working on that too.  It will take some time as well, I am sure.  In the meantime, just move along at the ATM OK?  Turn the stinking wipers off when it stops raining.  Don't make me crazy...

Ever since I was little, I have loved hearing people’s stories.  Everyone has one that makes them unique, and I think it is one of the coolest things in the world.  Here is the story of my daughter Ella – as told through my eyes.  – Jill

I took a picture of the little home pregnancy test.  I had started buying the high tech ones that actually say “pregnant” or “not pregnant.”  And Pregnant was staring me right in the face.  Truth is, I had stared at Pregnant three times before in the past two years.  And each of those times had ended abruptly with no explanation and the mind numbing loss from yet another miscarriage. 

But on that chilly November morning, I felt much different.  Less guarded.  More excited.  I had a peace right away that I would see this pregnancy through to the end.  I would finally hold that sweet baby in my arms we had waited so long to have…and fought so hard to keep.  Jeremiah 29:11 had been my inspiration.  “For I know the plans I have for you,” declares the Lord.  “Plans to prosper you and not to harm you, plans to give you hope and a future.”  I nearly knocked my husband out of bed as I bounced around waving the test in the air and thinking…FINALLY!

Considered “high risk”, I had nearly 20 ultrasounds during my pregnancy, including a Level 2 and a 3D ultrasound.  I would leave every appointment with another fuzzy black and white photo of a little peanut dancing around, body parts labeled…chin, arms, legs, face, eyes.  Everything always looked normal.  I continued to glow as summer arrived – loving every little thing that I was able to get away with and simply blame “being pregnant.” 

On June 23, 2006, at 34 weeks, little Miss Ella decided it was time to make her grand entrance.  Surprise, Surprise!!  The nursery furniture had not even been delivered yet.  Every shower gift was still in its box.  I had nothing organized!  Wait!!!  I still had six weeks!!!!!

As I was just finishing that thought, Ella was placed in my arms in the delivery room and we stared down at our daughter…drunk with love and affection for this little person we had just met.  She kept her little eyelids closed tight.  No big deal, right?  Not every baby opens their eyes in those first few minutes.  Right?  In a flash, she was taken from me and placed in the NICU where I later visited and wondered why she had not yet opened her eye lids.  I gave every excuse.  She is so early…she is still so tired from the delivery…she is sooooooo sleepy.  The nurse left and I was alone with her for a moment.  I touched her face, her eyelids.  I felt nothing behind them.  No.  Oh, no.  How could this be?  I thought for sure with all I had been through, I would have to be a top candidate for a perfect baby, right?  How could this ever be the plans the Lord has for me?  I simply prayed that I was wrong. 

The next morning when the Doctor confirmed by MRI that Ella was indeed born without both eyes, I felt even the sturdy concrete of the hospital hallway was not going to be enough to hold me as I slumped slowly down the wall.  My body shook with tears of sadness and confusion.  We were also told that she could possibly have brain damage, hearing problems and heart issues.  “Plans to prosper me and not to harm me?????”  I did not think I could take this news.  My brain would simply not process it.  I wept freely at the death of so many dreams I had for our first child. 

We would be transferred in two days to the Children’s Hospital at the University of Michigan where some of the worlds best Ophthalmologists, Cardiologists and Neurologists would access our little girl.  I felt as if I might not even last for two days. 

Back in my hospital room, our friend Lucy Ann was waiting.  She had traveled a great distance to see us and our new baby.  I felt like I could not face anyone.  But, the instant I saw her, I suddenly realized very clearly that I had only two choices.  Spend the rest of my life in denial, hiding from people, or embrace the life that the Lord has in store for my family.  I know that God sent Lucy Ann that day to help me come to this realization.  As she hugged me tightly, I prayed for the strength to face the dark cavern of unknown that lie ahead. 

The specialists at Michigan ran tests to quickly rule out brain damage and deafness.  We were told that the two small holes in her heart would most likely close with muscle growth and that her condition was “isolated” to her blindness.  They simply wanted to keep her in the NICU at Michigan until she could eat on her own and gain some weight.  She was healthy!  We had researched her condition, bilateral anophthalmia.  We spent hours learning to spell & pronounce it correctly.  We made an appointment to see the Ocularist at the Kellogg Eye Center.  We were pressing ahead!  In mere days we had gone from terrified and unsure to knowledgeable and confident. 

This much I know is true.  God not only held us, He cradled us in the palm of His hand the whole way.  “Plans to give us hope and a future.”  We found comfort in Him even though we were still wondering why He chose us.  I recalled the truth of a passage from the book “Let’s Roll!” by Lisa Beamer.   It reads:  “The plans God has for us don’t just include “good” things, but the whole array of human events.  The “prospering” He talks about in the book of Jeremiah is often the outcome of a “bad” event.  Many people look for miracles.  Things that in their human minds “fix” a difficult situation.  Many miracles, however, are not a change to the normal cause of human events; they are found in God’s ability and desire to sustain and nuture people through even the most difficult situations.” 

I will admit that at the time, I desperately wanted a “fix.”  I wanted my little girl to be perfect.  What I didn’t realize then was that she WAS perfect.  IS perfect.  Perfectly the way God created her.  I love my daughter so much at times I feel as if my heart might burst right out of my chest.  I am so incredibly proud at her accomplishments in her short 14 months of life.  She laughs out loud all the time.  She leans in to give you kisses on your lips.  She puts her little hands over her prosthetic eyes to play peek-a-boo.  (really…how the heck does she know to do this???!!)  Talk about amazing us at every turn!! 

But don’t get me wrong…there have been many, many times I have ached with pangs of grief at what she will never visually experience.   A beautiful sunset over the vast ocean.  The raw beauty of a snow capped mountain range.  Her Daddy’s handsome face.  Not one of us can know why God chooses to give people certain abilities…and chooses not to give those to others.  We received a card when Ella was born that contained this quote from Alan Redpath.  I am not sure if the person who sent it will ever know how much peace it has given us.  “There is no circumstance, no trouble, no testing that can ever touch me until, first of all, it has gone past God and Christ right through to me.  If it has come that far, it has come with great purpose, which I may not understand at that moment.  But, I refuse to become panicky, as I lift up my eyes to Him and accept it as coming from the throne of God for some great purpose of blessing, to my own heart.” 

Ella has blessed our hearts so much more than we could have hoped or imagined.  She teaches us about things that we sighted people take for granted.  She is our perfect first child…the one we had prayed for, fought for, dreamed about and loved for so long before she was even born.