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A Special afternoon and Evening!

if a picture says a 1000 words… this is speechless!

life unexpected…

And so it happened again… no matter how hard I try… my happiness for one daughter gets caught up with sadness for my other…

As a mom we watch our children change before our eyes. In the early years it is almost a miracle to watch the development of a newborn to a walking and talking toddler.

Sarah, my oldest, a very precocious and fashion minded toddler. Who I watched blossom through her youth and teens, now into her 20’s, a college graduate ready to “make it on her own.” (At least if you ask her that is what she thinks)

Well, this is what we want for our children, we want them to be happy and healthy, have security in a job and find happiness for their lives….

Butttt…. In the moment of watching Sarah grown up… graduation… and now getting ready to figure out how to move onto that next chapter in her life… I get caught up holding onto Hadley and wishing that she just had the chance to do one of these things… I do look at Hadley and marvel in all that she is and all that she has brought us, but sometimes ya know… I just wish… for more….

Just like it was yesterday

Dear Sarah,

Well I’m supposed to write a letter to you which reflects what you have meant to us over the last 21 almost 22 years in one page? Wow, that is going to be a little hard because what you have given us in your 21 years is sooo much more than a pages worth but here goes…

When I found out I was pregnant with you, I was overjoyed! As you know pregnancy and me just don’t get along and I am really hoping that I did not pass that on to you, but you know my mom had 6 kids and no problems so here’s hoping! Anyhow, my pregnancy was not easy; my OBGYN even called me the “girl with the little black rain cloud.”

It seems if it could happen during a pregnancy it happened to me to the point where I was hospitalized 3 months before your September 16th arrival date. I know you are saying September 16th is not my birthday but that was the day you were supposed to arrive, but being the “I must always be early” type of girl that you are. My blood pressure skyrocketed and my water broke on July 9th, 1988 and that was it, there was no turning back for us now. Your birth as you know was a bit scary and I was completely out but daddy was with you the whole time. When they pulled you out, you were a tiny little bundle of “pink.” But there was no sound. Well now we know that years later those vocals work real well! You were ventilated and resuscitated and rushed to the NICU. Daddy just stayed with you the whole time. Of course over the course of your life you have heard us tell you how the doctors told us you would be “deaf, blind, would never walk or talk on your own.” But you were beautiful! We were devastated, what was going to happen to our little Sarah. Obviously the doctors were very wrong about you and yup, that little omen was a prelude to your sisters’ life which has affected all of ours greatly, but this is about you not her! Lol

As a little girl you were always outgoing and caring reaching out to all of those who needed a friend. We were always so proud of you for this. You have always been a “little” more social then scholarly. Given a choice of doing your homework or watching TV with friends well that was an easy one, TV and friends always won out, although you did learn some funny lessons there, “remember everyone is beautiful, all you have to do is squint.”

Over the years we have watched you grow into a fine young lady. We have watched you develop and learn to understand your sisters’ disability which I know is a hard obstacle to get through, but you have done it with grace and poise, wanting to help change the world and teach others about discrimination against the disabled. It takes a lot to get up and put your money where your mouth is and I’m so proud that you have done that.

When it came time to apply to colleges daddy and I had a long talk about where you would finally end up going and we decided that decision was going to be yours, you always knew you could come back to our home state if you weren’t happy with your choice. Thank goodness you loved Alabama the moment you stepped on that campus, I could see an ease in you and next was “sorority life.” Would you follow in my footsteps and be and ADPi? I remember when you were going thru rush and your nightly calls about each house and your feelings about them. I guess I was hoping that you would end up an ADPi and I remember standing on the corner of bid day next to your dorm waiting and waiting for the parade of girls to go by and finally “see” what house you were in. And the “A’s” came by and finally Alpha Delta Pi, and there seemed to be a 100 girls and where was Sarah? I thought “oh no!” But low and behold, there she was one of the last one’s running with the group. There she was Sarah Caroline an Alpha Delta Pi pledge! And yup, I cried a little bit!

You have always been a ray of sunshine! Sometimes a little bossy! Sometimes a little loud! But always with grace and poise and a wonderful wonderful spirit and great heart! I’m proud to call you my daughter, and sister, We will love you always!

Love,
Mommy and Daddy

Last week I proudly sat at the Coleman Coliseum amongst 6000 or so proud parents at the University of Alabama awaiting the procession of our graduating seniors. Nineteen years of school! It is hard to believe, where did those 19 years go?

I made this little video of Sarah’s life and thought I would share it with all of you.

Just like it was yesterday

For those of you with small children enjoy it, take your time to “smell” the “roses” and the not so “rosey” moments for that is what makes up your picture book of “life.” What is your favorite memory of your children so far?

Our vacation that went from Magic to Tragic…

Well we “attempted” to have a nice family vacation for what I believe might be the last time since Rebecca will be graduating from college in May. But noooo I think sometimes that is toooo much to ask for in “my life.”

We have gone to Disney to celebrate the holidays for the last ummm five years, we have had some really good laughs and times during these weeks, we’ve also had a few bad experiences with Disney during these weeks but somehow as the “last family fling” Rebecca and I thought it fitting that we return to the most “magical place on earth.”

Things were fine the first day or two the usual craziness of what to go on, what to run and get fast passes for, what Ainsley would enjoy, and a well needed haircut for Geoffrey, but when the third day hit that was “it.” That was the day our Disney vacation went from Magic to Tragic!

There were some problems back at work and Geoffrey spent the rest of the vacation on park benches talking on the phone. This hurt me a lot! I felt sooo bad for Geoffrey but at the same time I felt bad for our little family! All I kept thinking as I looked at my two girls was this is probably going to be the last time we all have a chance to go away together… And then the “next chapter” began to tear me up. Graduation for Rebecca and moving on with her “life.” I guess I have been putting off thinking about this for soooo long that it kind of smacked me in the face as I looked at her. I can remember when I was 21 and graduating from college, I knew that Geoffrey and I were going to get married so I was staying right where I was, looked for a job and defiantly was not moving back home. I was starting “my life” as an adult. And although times have changed sooo much and with the state of the economy I know it is much different I know that Rebecca most likely will be coming “home” for a year or so, but after that she will be “gone.” Gone from our house, no more, loud music, no more cell phone ringing all hours day and night, no more worrying about late nights, or no more time with the two of us sitting and chatting about life on the couch. Those days are quickly coming to an end. She will be going into the world as an adult and leaving my memories of my little daughter behind.

So as I sat on the many many benches at Disney this is what kept going thru my mind. She’s a good girl, (young lady) she knows right from wrong and now it’s her turn, and I just pray that she will be safe and have a good life. Well, we have 4 more months until graduation I guess I better keep a large stock of Kleenex between now and then!

One day… all babies will be born healthy

Twenty one years ago, I was a young scared soon to be young mom, who had been lying in the hospital for almost six weeks due to complications from Preeclampsia/Toxemia which was only getting worse. I didn’t understand what this was or why this was happening to me, and no one took the time to explain anything other than the fact that my blood pressure was going up, and I was spilling protein in my urine, (whatever that meant) and just before my water broke I gained 5 pounds overnight of I believe fluid; I wasn’t eating a lot because at the same time I was suffering from major gallbladder attacks so I couldn’t eat anything with fat or I had an attack, so there wasn’t to much I was eating; therefore the 5 pound weight pain was just scary. My hands looked like I was wearing baseball mitts and my legs and feet were so swollen I couldn’t even see my ankles. I knew that this was just wrong and I wanted to know that my baby and I were going to be OK. All I was told was the “cure” of my Toxemia was to deliver the baby.

The evening after the huge overnight weigh gain, my water broke at 34 weeks. I was told that it would be risky for the baby, perhaps his/her lungs would not be developed enough, but there was no way to stop the pregnancy at this point. This was my body’s way of saying “get this baby out of here.”

Twenty five hours and forty minutes later Rebeka was born via an emergency c-section. I don’t remember much of her birth since I was so exhausted from the Pitocin-which was used to speed up my contractions, and Magnesium Sulfate, which was used to “stabilize” my blood pressure which was like a roller coaster, going up and then plummeting to the point where they needed to give me Epinephrine to bring it back up. My body was going through a huge amount of emotional and physical anxiety, but I do remember when they pulled her out, and there was “nothing.” No cry and then panic hit the room. My poor husband didn’t know which way to turn, to me, or to our newborn daughter whose future which looked quite grim. They rapidly laid Rebeka down on a board and used Velcro straps on her arms and legs; that is all I remember before I blacked out.

When I came to I was in the recovery room and Geoffrey was sitting next to me. I remember I couldn’t move, and of course I asked about the baby. Where was she? How was she? How much did she weigh? What did she look like? The next 24 hours Rebeka showed us what a fighter she was, within that time the tiny 4 pound baby that was born not breathing who was resuscitated and ventilated was pulled off the ventilator and breathing on her own.

In the mean time, we were told by all that she would most likely be “blind, deaf, retarded, and probably never be able to live on her own.” We were devastated. How could this beautiful little baby be born and be such a “fighter” to only have these prognosis’s “thrown” on us? Well they couldn’t have been more wrong. Rebeka has grown to be a very intelligent and well versed 21 year old lady.

However now believe that the powers “above” were just “testing the waters.” Three and a half years after Rebeka was born, I went through the same ordeal of a “pregnancy” with the same lousy complications, minus the gallbladder issues because six weeks after my first section, I had my gallbladder removed. (Back to back surgeries not recommended by me!) In any event, the same things started happening but I was much more aware of what was going on and just a little scared about the same thing happening again.

And at 34 weeks after a month long stay in the hospital Ainsley was born. When things went to that “bad place” on the radar we opted it was time to get her out and scheduled a section for the first availability of the Operating Room. The next morning I was wheeled in and prepped for surgery. This time the section went much better and thank god, when they pulled her out, I heard that loud cry! There was no “drama” no board with Velcro, they wrapped her up and carried the little 3 pound munchkin to the NIC unit to eat and get bigger and go home and start her life. Unfortunately when Ainsley was 10 days old she suffered an intraventricular hemorrhage which changed her life and certainly all of ours. And then I remember what “they” had warned us about Rebeka. What was going to become of our little Ainsley? How would we live with a disabled child? What would that mean for her? What would that mean for us?

Our family has come a long way in those 21 years, we have learned to jump thru hoops and we have overcome a lot in coming to terms with having a disabled child. We have even become advocates in the disability community! I share this short snippet of our family’s history with you in honor of March of Dimes Prematurity Awareness Month.

And ask that you take a moment to see how you can get involved. If nothing more become informed about premature birth. Although I could not avoid mine there are things women can do.

The March of Dimes mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. They carry out this mission through research, community services, education and advocacy to save babies’ lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birth weight.

Please share this info with anyone who you know who is pregnant and make sure that they are getting prenatal care. I am always happy to talk to anyone who might need help, even though I am not a doctor and do not claim to have any medical training, I have “been there and done that,” and I am happy to reach out and share with anyone who might need an ear or a hand to hold, even if it is through the Internet!

“S” is for Special and Shoes

Last week I was getting Ainsley ready to go back to school for her 10th year; this was complete with a haircut, a trip to the mall and rounded out with a trip to visit our favorite shoe guy “Mr. Ed” at Shoe Train. Somehow I realized that last year in the midst of all of my craziness we didn’t get to see Mr. Ed so Ainsley had been wearing the same sneakers for two years. Good thing she hasn’t grown any.

I have had the pleasure of knowing Mr. Ed since Rebeka was a child, which is about 20years now, since I believe we bought her first pair of “real” shoes when she was one. Mr. Ed is known by all in the community as a special man with an exceptional and loving staff.

Before we left home I called to confirm that Ed was in and was warned that there was a list of people who had been there in line since before the store opened waiting patiently for his assistance. We arrived at Shoe Train at 11:00 am with smiles on our faces knowing when we were finished Ainsley would have some new shoes for the school year. We were prepared to wait our turn knowing it might take an hour or two. Ed Jurgrau see’s up to 100 children and their parents a day during this back-to-school season, as his clients come from as far as up to 100 miles!

Ed opened Shoe Train in 1979 and has been servicing the community since. Shoe Train is not only known for their wonderful and knowledgeable staff for the regular customer, they also specialize in servicing the special needs community. What people love about everyone at Shoe Train is they take the time to fit your children properly, and they have a large selection of styles in widths and sizes to please all children even the pickiest of teenagers. Over the years he has taken Ainsley’s shoes and molded them to fit her orthotics and now he specializes in making Cascade orthotics, which is a wonderful extension of his business.

As we waited we saw several families big and small and I was a little surprised and horrified to see a woman behind me who brought in a bag of shoes she had obviously purchased at Nordstrom’s and asked Ed to make sure the shoes “fit” each child. Ed just complied with a huge smile. That is just the kind of guy Ed is! He genuinely cares about the children and the community.

Over the years our family has grown close with Ed and I’m proud I can call him my friend. He has always been a huge advocate for our family’s causes as well as the communities. Ed has donated 1000’s of pairs of shoes to various organizations. In 2004 when Rebeka was competing in a pageant in Las Vegas Ed has told me he was going to be there at the same time for a shoe convention and low and behold he showed up to support Rebeka with a hometown smile!

Bill who has been working with Ed for years, also works with the Frederick Key’s Baseball team, and over the years he also spent a great deal of time helping our family with special projects. We were so glad to see Bill at the Frederick Key’s game when Exceptional Parent Magazine honored our family with the Maxwell J Schliffer Community Service Award.

So we waited three hours, until 2:15 pm, for Ed to fit Ainsley with her shoes but as usual it was well worth the wait for this special man!

Back to School with a wink and a smile

As summer comes to a rapid close, it is “back to school time.” It is a “happy time” for most mom’s who spend these last few weeks getting their little one’s get ready to “go” for the first time; running to the shoe stores to get that special pair of fancy shoes and “needed” new white sneakers. This is usually followed by visiting the office supply stores to load up on crayons, folders, pencils, and scissors. And let’s not forget stopping to get a new lunch box and character backpack.

Somewhere in the beginning of the year each year children write essays about their summers and about their families. I can remember reading some funny essay’s Rebeka wrote and I can remember even writing these essay’s as a child. Along the line somewhere there was one or two that Rebeka wrote about me or Geoffrey being her hero, and I always thought that was so sweet.

The middle school and high school crowd usually heads to the mall without mom to pick up a few new fancy duds and then somehow remembers that they “might” need school supplies so they then go with mom and stock up on notebooks and pencils.

In middle school so much changes with children, their schools and their friends and their opinions on everything, because being pre-teens they know “everything about everything in the world.” And I remember reading Rebeka’s English papers and she was beginning to understand the degree of Ainsley’s disabilities and she would often write about that.

And then there’s me with one child who left two weeks ago for her senior year of college (ok so she’s not a “child” in age but she will always be my “child” in thought), and my other special child who is getting ready to go back to her 10th year of school, not necessarily 10th grade since she is in special education which continues until she is 21-years old. Following with what most moms are “doing” we loaded up the minivan and headed to the mall. We had a “mommy and Ainsley” afternoon of shopping, we went to the GAP, American Eagle, Old Navy, and of course PINK. (Shopping with a high school girl is NOT complete without a visit to PINK.) She still needs her new school shoes which we will have to get this week and that last minute haircut so she can “see” without her hair in her face.

And as we were driving home from the mall I looked up in the rear view mirror and looked at Ainsley strapped into the van in her wheelchair and it was then that that I was hit with a bittersweet smile and I started thinking about what she would be buying if she was not disabled; she would be buying an outfit for her senior picture and getting ready to return to her exciting senior year preparing to head out of the nest and off to college. I wonder what she would be writing about in her high school English essays…

But again, I stop and think that is not our life, but I stop and realize how wonderful and inspirational she really is and how much I love her just the way she is, and how blessed I am to have her in my life and I then realize once again that I’m not her hero she is ours!

There’s a hero,
If you look inside your heart,
You don’t have to be afraid of what you are,
There’s an answer,
If you reach into your soul,
And the sorrow that you know will melt away.

And then a hero comes along,
With the strength to carry on,
And you cast your fears aside and you know you can survive,
So when you feel like hope is gone,
Look inside you and be strong,
And you’ll finally see the truth that a hero lies in you.

It’s a long road,
When you face the world alone,
No one reaches out a hand for you to hold,
You can find love,
If you search within yourself,
And the emptiness you felt will disappear.

Lord knows,
Dreams are hard to follow,
But don’t let anyone tear them away,
Hold on,
There will be tomorrow,
In time you’ll find the way.

That a hero lies in…..you
Ooohh that a hero lies in…..you

And when you get the choice to sit it out or dance, I hope you dance

I smile as I sit back and look at photos of my daughter’s childhoods. Although they are so very different, one a special girl, and one with special needs they are still in many ways so much alike. Both love to dress up, paint their nails, listen to music, and both love to dance.

When Rebeka was younger it was a no brainer that she would take ballet, that was a given, just like she would be a brownie, attend Sunday school, and play with her friends. She would take ballet as all little girls did, I did, my mother-in-law did naturally my daughter would. We bought the black leotard, pink ballet slippers, pink tights and plenty of scrunches to pull the hair tight and back. She danced off and on for years finally ending up studying jazz with a private instructor, she never was a very “disciplined ballerina” and jazz fit her much better. I used to drag Ainsley when she was but a wee babe to all of Rebeka’s classes and as she grew older I wished that she too could dance but understood that would be impossible with her disabilities.

The hardest part of the year for me was Rebeka’s end-of-year recital. I was so proud as I watched her dance with joy and then saddened and wished that my little Ainsley could be up on that stage too. Through the years we attended many recitals and had the bittersweet feeling of joy for one child and sorry that another would not know that simple joy.

But then Becky, Ainsley’s Physical Therapist told us about a program at Maryland Youth Ballet that she was working on. Becky along with MYB’s Jennifer Cox, a 30-year dance professional, who was inspired by her own granddaughter’s desire to dance despite a disability, developed a program to allow children to enjoy the beauty of music and motion, and gain the benefits of the physical therapy.

Becky described the program and told us that at Maryland Youth Ballet’s new Silver Spring dance facility a state-of-the-art overhead track system was created which allows each dancer to participate without the aid of a volunteer. She then described that dancers are suspended with the aid of a vest sling and attached to a traverse rail system hung in the ceiling giving the dancers complete range of motion. My goodness how I just knew Ainsley would love this!

After listening to Becky talk about the program I immediately jumped at the chance to enroll Ainsley in the summer classes. Every week when Ainsley would go to her ballet class I pulled out the same outfit that Rebeka used to wear so many years ago, the black leotard, black tights and pink ballet slippers. Ainsley loved going to class, and she loved “dancing” in the track system. And for one brief moment I remember the recitals and closed my eyes and “saw” my little Ainsley and she was dancing!

Proms, Princesses and Promises

Well, it is May and that means a few things, summer is almost here, barbecue season is in full swing and it’s Prom season, with excited girls all over the country.

Over the past few days I have seen several pictures of beautiful young girls getting ready to go to their prom; experiencing that ever so big rite of passage, and celebrating the end of high school, the beginning of college and adulthood! So much has changed in high school and so much has stayed the same.

My older daughter graduated from high school three years ago and we went through the “prom” excitement with her, although in our home she went to two proms; her boyfriends’ at the time, who is a charming guy from Tulsa, Oklahoma and hers which was a huge run around until she found “Mr. Wrong” who she took but that is a whole different story. In any event getting ready for both was a huge production, one of which I didn’t see as she was many states away but her boyfriends’ mom took very good care of my sweet daughter, and hers at home which no matter who she went with was a night designed for a “Princess.”

So what is the prom really all about? I myself didn’t go to my prom mostly because my parents actually moved me in the middle of my senior year of high school from basically one world which I was a part of since kindergarten to another not so friendly world where I spent a very lonely 5 months; who wants to make friends with the “new girl” when we were all getting ready to leave for college? Anyhow, I knew the day that my daughter started dressing up like a “princess” at the mere age of two that someday her prom was going to be a special night for her.

So back to the prom and what is it all about? If you ask any 17 or 18 year old girl and they will tell you; it’s about the dress, the hair, the make-up, the dinner, and sometimes the date. It seems though that even if I didn’t’ go to my prom, I am sure that back in 1979 when hair was big and fluffy like “Farah” or short like “Dorothy Hamill” and Studio 54 was the rage with disco, that girls everywhere still cared about the same things, the dress, hair, make-up, and that special date, and being with your friends that you promised to always stay in touch with.

One thing I know is true is that high school today is soooo different then when I went to school, technology has moved things so far ahead of where we were but at the same time things still remain constant; teenagers remain basically the same. The friends, the promises, no matter who you were and who your group of friends was, you thought you would always be friends. Well come on at 17 that’s what you thought, right? High school will always be high school, the “cast of characters” will change but there will always be the “popular kids” the “sporty kids,” the “freaks” and the “geeks,” no matter what the prom is a celebration for them all..

To quote one of our families’ favorite movies, “The Breakfast Club…”

“Dear Mr. Vernon, we accept the fact that we had to sacrifice a whole Saturday in detention for whatever it was we did wrong. But we think you’re crazy to make an essay telling you who we think we are. You see us as you want to see us… In the simplest terms, in the most convenient definitions. But what we found out is that each one of us is a brain… and an athlete… and a basket case… a princess… and a criminal… Does that answer your question?… Sincerely yours, the Breakfast Club.”

Happy Prom to each of you out there and hope it is as magical a night as you had dreamed!

It was a moment… but a life altering moment

Your child has “cerebral palsy” with a kick to the gut and a brush of cold reality this is how the therapist told me. No nice, please sit down, pull up a chair, put your baby down and let’s talk… it was a fast cold harsh diagnosis.

It was November and I can remember thinking on the way over to the appointment what I needed to do for our holiday celebration, shopping, cooking, flowers, you have to have flowers, ironing the table cloth. Nowhere in there was there thinking about a life altering diagnosis which would forever change my daughter’s life but also all of ours who care for her.

I remember I just sat there and held my daughter and stared at this woman who so crassly changed my world with the stroke of five words. Cerebral Palsy; What would this mean for her, for us? And as she abruptly got up as fast as the words fell out of her mouth I just sat and wondered…
How am I going to do this?
What about school?
What about friends?
What about ballet with her sister?
What about her prom?
What about college?
What about her wedding and grandchildren?

I sat there and watched one life vanish before my eyes and another unknown one begin. It was as if I had lost one baby and given birth to another in the same moment…
Then the…
Why me?
Why us?
We have always been good people, how could this happen to our family?
Why did god do this to us?

I picked up my daughter and brought her out to the car in her car seat and I remember I just sat there and cried… and cried… as I kept looking at her in my rear view mirror.

When I got home, which was thru the grace of god because I’m not quite sure how I drove and cried with so much on my mind. I picked up my daughter from her car seat and brought her in the house. And as I did this she looked at me with her big beautiful eyes and smile and I knew this wasn’t going to be easy but look at her, she was beautiful and I was blessed with her just the way she was, and I was going to be dammed if I was going to let some stupid diagnosis change the way I was going to raise my daughter. Screw that! I was going to give her the best life I possible could! I was determined to make each day of her life a little easier anyway I could.

My daughter is now 17 years old and not a day has gone by that I don’t wish a magic wand could give my daughter her “legs” or a “voice” but I love her just the way she is, she is my child, my beautiful beautiful child!