Sammy and Noah have something to share……..

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HAPPY FOURTH BIRTHDAY!!!!!!!!

Doctors said this day would never come.

Mothers’ intuition told me otherwise.

One of life’s greatest stories are those of underdogs.

Samantha and Noah, your story is a story of underdogs and it is one of life’s most beautiful tales.

Yours’ is a tale of undying strength and determination to defeat the slimmest of odds. A tale that began the moment your father and I chose to listen to you instead of modern medicine. We knew the odds were stacked against you, we knew the struggles that lie ahead, but I also knew in my heart that if any children could beat the odds that our children could. Reason told us that this journey would be filled with heartbreak; love taught us that the best things in life are worth fighting for. You are the best thing that has ever happened to me, and make no doubt about it; you have been worth every fight.

Four years ago to the day, I was in the fight of my life. Fighting for children that we had so fervently fought to create, fighting for children that I knew; yet children I had yet to touch. Each year I think this will be the year that memories of your birth and the tumultuous weeks that preceded your arrival will fade. But then, as I recount your achievements of the past year, I realize that those memories while painful and raw, remind me how close we came to writing a different story. It is only through ever so briefly reminiscing on those inconceivable weeks, that I am able to fully wrap my head around the magnitude of today.

Today you turn four. And of all the wonderful milestones you have achieved in the last year, the most profound achievement is this…. Today as you both turn four you have achieved every single developmental milestone that doctors doubted you would achieve in a lifetime. Your likelihood of survival was less then 5%, and if you managed to do the impossible and simply survive your chances of being able to breathe, eat, walk or talk were impossibly even less. There was plenty of doubt. With doubt comes resolve. There in those earliest moments together there was a resolve within your hearts, a desire to live, and a fight to overcome. Overcome you both have and prouder we could not be.

A dear friend of mine who is also raising a VI micro-preemie once told me, “three is the year it all clicked.” Sammy Sue and Noah were two when I was told this. I wrote it down in a calendar and made some smug remark, “only 365 days before it clicks”. And now more than a year after that conversation, I can’t remember when it happened, there isn’t a specific moment, or a particular milestone that defined the “clicking.” Rather, it is now, on the eve of your fourth birthday that I realize that somewhere between school, therapy, birthday parties, runny noses and lots of tantrums, it clicked.

Because I have witnessed how rapidly time passes, and because history has taught me that the timeline of your achievements will fade in clarity, you should both know that three was YOUR year. It was another year (that’s two years now for those who keep track!) that we avoided inpatient status at the hospital and yet another year without any medical setbacks. This year can only be defined by successes and the successes just kept on coming.

Your third year began with one of our biggest transitions thus far. The dreaded switch from private preschool to public school ended up being far less dramatic than the images I conjured in my head. Like professional school children, both of you rose to the challenge and acclimated like rock stars to life in public preschool. When looking back on the blessings of your third year, Bendwood will be listed among the top five. The staff and teachers welcomed you both with open arms, and you will be hard pressed to find someone there who isn’t already dreading your departure in June. To Ann and Linda Beth and Gerry, to Charon, Karen, Bea, Charlotte, Eileen, Jana, Allison, Nurse Judy and most importantly Kathy, a HUGE thank you. Without each of these amazing and talented educators our successes of this past year would not be possible. Not only have each of these individuals enriched our lives, they have provided a foundation of learning and love which has and will continue to allow you to do anything each of you set your mind to.

Each of you, if you could, would want me to give a special “shout out” to Kathy. And even if you each said “no,” your typical response to anything these days, I want to recognize her. For without her, we would literally be lost. Wandering aimlessly throughout this world of special education, doubting ourselves, questioning our every turn. For within Kathy, our family has found our confidant, our mentor, and our friend. She continues to guide each of you in just the perfect direction and with her patient yet unrelenting ways she encourages each of you to grow and discover. To Kathy, even on the toughest days, when administrative paper work has you bogged down, or the glimpse of retirement catches your eye; never forget how instrumental you are to us, and to all that Sammy Sue and Noah continue to achieve. Love cannot be seen or touched; it must be felt with the heart. We love you Kathy!

One would suspect with school now five days a week (that’s right, you weren’t the only ones who had an awesome year!) that our therapy schedule would have eased up. In a manner that could rival war room strategy planning, we managed to devise a therapy schedule that allowed each of you to attend school every morning and participate in therapy every afternoon. The days are full but the rewards make it all worth it. Monday through Thursday the three of can be seen making our ways through the multiple Texas Children’s facilities. While our therapy frequency didn’t change this past year, our means of transportation certainly did. For the first years, we “strolled” through the halls of the hospital. With joy and much strategic planning, we delightfully ditched the stroller this year and we proudly walk to each of our appointments. At first impression, the walking concept might seem significantly easier than lugging around a stroller. Generally this assumption would hold true, however between my stubborn stomper and my hyper hopper, walking all together is less than convenient. It’s a joy, don’t get me wrong, nothing makes me more proud than when someone recognizes us from our NICU days and is in awe of our progress. But during the other 59 minutes of each hour, I am constantly reminding Noah to “walk nicely”, “stop banging your cane” “don’t push your sister” and then there’s Sammy who I am just as frequently reminding “Sammy you still need my hand”, “ok be mad, keep stomping” “slow down you are going to fall”. The only image that can possibly complete what I have just described is me holding a large red and white swirled balloon, holding Noah’s left hand (the only hand he allows to be held) while he walks with his cane and Sammy Sue stomping while she reluctantly holds my other hand. If you close your eyes to picture this, in the background of this mental image you will hear the circus them song.

While our means of getting to therapy can be rather complicated, your progress in your sessions has proven anything but. Each of you has excelled this past year, but it hasn’t been without the assistance and dedication of our most fabulous “team”. Sara, Stephanie, Stephanie F. and Tiffany have worked with each of you tirelessly and rooted on your every step and word. They have pushed you to the limit and then asked for more and each time the two of you come back swinging. No one could be more invested in your success and progress than these four women and no one else could have gotten us to this point. To our team of remarkable women, thank you for yet another year of unimaginable goals achieved.

Unimaginable to me is the people you have each become. The babies we watched slowly grow have disappeared and instead have camouflaged into little people. It’s unimaginable to think of how far the two of you have come in such a short amount of time. Time that the four of us learned very early on to never take for granted. And while life has certainly changed since those early weeks and months, the lesson of your birth, of your fight remains the same.

The lesson is this; only from the darkest of places can a glimpse of light be most appreciated. Everything each of you continues to achieve is sweeter for the doubt surrounding its possibility. Every battle you have valiantly fought and won has provided us a more solid foundation for the war that possibly lies ahead. And every moment of laughter and joy that you bring to us reminds us of the fragility of life, the importance of hope, and the realization that anything is possible.

 

3 months old

 

1!!!!!!!!!!!!!!!!!!!!!!!

 

2!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

3!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

4!!!!!!!!!!!!!!!!!!

Noah, watching you defy every odd and expectation is my own daily affirmation in my belief that anything is possible. Never in a million years could I have dreamt of having a son so talented, so intelligent, so determined. You have this effortless way about you, you make everything you do seem easy. Others may be simply mislead, and buy into the idea that all that you do comes easily. I know first hand the effort you put into all that you do. Whether it is vacuuming the house, washing your hands, walking outside, playing the piano, working on your puzzles, none of it comes easily. Each peculiar way of doing something is methodical and purposeful. You are a self-teacher with an insatiable curiosity. We live in a sighted world, or so they say. But you Noah remind us that we all just live in the world and it is up to each of us to determine how best to utilize our space. Your ability to see through your ears, fingers and imagination has astounded us this past year. We always sensed that you were bright, but it wasn’t until shortly after your third birthday that we realized just how right we were.

Shortly after you turned three, your speech therapist gently suggested that we retest your hearing. Clearly, as the mother of two blind children, the mere suggestion of a hearing impairment sent me into a tailspin. The cause for the additional hearing screen was simply to eliminate any possible explanation for the delay in your speech and language skills, goodness forbid it could be easily explained by your seventeen-week premature arrival! To appease your sweet therapist, and to help me sleep, we did the hearing screen. We learned two things on during that long afternoon at TCH, 1) you can hear EVERYTHING and 2) sedative medications provide the opposite effect for both you and your sister. Within days of that sedated hearing screen your language began to take off, as if to say to the rest of us, see, just give me some time and it will happen. It was your way of controlling the situation, something you have become a mastermind of and something warranting elaboration much later.

Your language, which has only flourished since that day, has literally opened new worlds to you. It started with mimicking words, and then phrases, our favorite of which being, “Flappy-Cock”, the translation being Flappy and Tex our two puppies. We will never know how Tex became “Cock” or why exactly Flappy must always come first, but needless to say “Flappy-Cock” sure got people around you smiling! Shortly after you began picking up on things we say all the time, “um, I think” in response to a question, “I love you”, “we are going home”. It just kept coming. Your very first independently created sentence was “I want Sammy out”, surprised I was not to hear your first sentence relating to a desire to get rid of your sister.

Oh you and your sister! What a dream it has been to witness the relationship that has FINALLY developed between the two of you. She has always adored you, but up until this year you merely toleratedWe her. It wasn’t until this year, when it all just happened to “click” that you appeared to not only gain interest in Sammy Sue but you expressed a desire to be around her. Your desire to be around her should not be confused with an eagerness to share, because that it is not. But you do love her company. You are the first to tell her good morning and the first to kiss her goodnight. You even love coming to the pharmacy with me (a frequent stop on our list of errands) and you proudly tell the pharmacist, “Hi, it’s me noah, I am here to pick up Sammy Sue’s medicine.” You don’t know what kinds of medicine Sammy takes, but you do have a deeper understanding of why she takes them and how important they are to her. It is in those moments, when you remind me to give Sammy her medicine, that I know you are more than just a little boy who loves to be outside, you are a little boy with a super big heart. A heart that embodies those that have come before you, those that have made you the boy you are today and the man you are destined to become.

The boy you are today is a stubborn, relentless, and fiercely independent with an imagination that could light up the stage. I have always wondered how an imagination would develop in a child unable to visually picture the world around him. But again, just like so many times before, you have shown me, and those around you, that just like beauty, the world and of our conception of it is in the eye of beholder.  You are funnier than you know and your sense of humor has a quality of timing and precision that bring us to tears on even the roughest of days. You have become bossier this year, and for a while I tried to contribute these new behaviors to the “tricky threes” but something tells me genetics is playing more into this than I am willing to concede.

You are a mini me in every way. Your preference (and that is putting it mildly) for a schedule is frightening in an uncanny kind of way. And while the schedule issue can be particularly tough to deal with, your stubbornness is puts everything else to shame. I have developed a love-hate relationship with this part of you, certainly because I understand this refusal to surrender. Time will teach you that this uncompromising personality trait can be double edged. Never allow it to take control, instead always remember the reward in compromise, the joy of pleasing others, and the importance of flexibility.  It is a lesson that even I was only taught, ironically, a lesson you taught me.

Since the moment we learned you were on your way, my inability to lower my expectations for you or alter my dreams for your future has hopefully instilled in you and all those who work with you, that you Noah, will do anything you set your mind to. As challenges presented themselves, and they will as life continues, I learned to re-evaluate, not lower, my goals for you, and for me as well. I always thought that children were a reflection of their parents. That was until I had you and I realized that I am a reflection of YOU. If given a choice, there is no one who I would rather be reflected upon.

 

3 months

 

1!!!!!!!!!!!!!!!!!!

 

2!!!!!!!!!!!!!!!

 

3!!!!!!!!!!!!!!!!!

4!!!!!!!!!!!!!!

Ok, well, maybe there is one other person, my princess warrior Sammy Sue. Sammy, I have been drafting in my mind for weeks how I would consolidate your year of amazement into a mere few paragraphs. Time after time I fell short. I read through your third birthday letter, and was immediately struck with the notion that nothing I could write could adequately express just how crazy proud we are of you. It has been a year of culmination, where the fruits of your labor from years past have all come together in one wicked explosion.

One of your therapists said it best just yesterday, “her personality has just blossomed this year.” It’s one thing to think that as your mom, it is infinitely more rewarding to hear it from a professional. Your personality is a combination of sass and sweet with a heavy emphasis on sass. Again, like I assumed with your brother, I attributed this sass to the “tricky threes,” I think it is time I call a spade a spade and recognize that the apple hasn’t fallen far from the tree. Your sass is sweeter than mine, but it isn’t any less convincing or motivating. You continue to push yourself at every twist and turn, refusing to stay stagnant, never allowing the crowd to leave you behind.

Shortly after your third birthday you began taking your first unassisted steps. They were deliberate, carefully planned, and quite honestly even more carefully observed. Your desire for freedom and my overbearing need to protect continue to be at odds, and if history has taught me anything, so continues the relationship between mother and daughter. Your walking continued to improve day by day, session and after session. We even became more comfortable with you walking independently in the house. In April, you had your first traumatic falls. You are many things Sammy Sue, but a protective catcher you are not, and you fell forward and caught your fall with your face, or more specifically with your chin. Something tells me time won’t erase the memory of that first fall, it took me weeks to walk with you again, but somehow you were ready only moments after having your chin sewn up. That’s so you, Sammy. You can be knocked down, but you always get right back up. Its what defines you. You are beautifully resilient.

You are patient, never rushing the next achievement of phase in life, a trait you most certainly inherited from the other “tree”, your sweet Daddy. Watching the two of you together is like witnessing my world come full circle. The way you love him, is just the way I love my father. Your patience should never be misconstrued as a lack of motivation; you are simply more tactful than most, waiting for the perfect time to pounce.

Your walking continued to improve over the summer, enough so, that we conducted a ceremonial burial of the stroller, and began our new life together holding hands. Sammy Sue, nothing in my life will ever bring me as much joy as holding your hand as we walk together. There has been no cause more important, no fight harder fought, no outcome more rewarding, than every time we get to walk together. You smile when you walk, you grin ear to ear, and early on you even squealed. To be honest, I think I squealed too! Your ability to walk the halls of TCH leaves those who witness it, speechless. We all remember the days, not so long ago, days filled with poor outcome predictions, long waits in the surgical waiting room, long nights by your bedside in the NICU. Some might call it a miracle, they would be wrong. Miracles just happen. This didn’t just happen; you fought tooth and nail for this.

70 years from now, when I look back on my life and recall my greatest joys, and my most profound lessons, the battle for your first steps will undoubtedly be at the top. There is nothing that I have wanted more for you, and in turn I learned the lessons in both patience and prayer. Of course I wish it had come more easily, possibly with fewer bumps and bruises, but had it, I am not sure if the lesson would have been the same. I don’t know if I would be the same without the journey. Your refusal to surrender is an inherited trait, a trait that allowed me to bring you home, a trait that allowed my father to never be beaten down, and a trait that your great grandmother relied on during her darkest hours in a concentration camp. You come by this naturally, but never has tenacity looked more beautiful.

I can’t call you my little girl anymore, and my days of saying you are going through a growth spurt are numbered as well. You are already half my size both in size and in attitude. I must mention that your eating issues are certainly something of the past. Picky you may be, but able to eat you are! You LOVE cupcakes, and have recently acquired an affinity for macaroni and cheese. You are a hearty eater, which unfortunately you came by naturally! You love to be silly and you will do anything it takes to get Noah to laugh. You are a human whoopee cushion (not your crowning glory) but when there are two three year olds, you’ve got to do whatever you can to stand out in a crowd. You are obsessed with music and follow the likings of Adele, Bruno Mars and Lady Gaga. You LOVE to dance and we have dance parties in the car. I will crank up your song and the two of us will bust a move while sitting in traffic after a long day at therapy. Noah hates our dance parties, partly out of embarrassment, mostly out of his need to control.

Your need for control pails in comparison to your brother’s but you do know how to control a crowd. You are a hugger and a kisser. And what started off a sweet and endearing hug has now evolved in a manipulative please don’t make me work hug. We are on to you Sammy. I am not sure if there will ever be a point where we will turn away a hug, but we are strategizing how to beat this manipulative maneuver.

Your walking is getting stronger with each passing day. You can walk the hallway of therapy now completely unassisted and you have recently begun to follow “stop and go” commands. A skill that doctors that you would never understand, much less be able to put into practice while WALKING. We actually use the words “don’t move” because we quickly learned that after years of hearing me say, “Noah, stop” the word “stop” clearly has a negative connotation.

Stop might not be in your vocabulary yet, but “GO” certainly is. One week before your fourth birthday you did the impossible and shouted your first word that everyone was able to clearly understand. “GOOOOOOOOOOOOOOOOOOOOOOOOOOOO”. First, I cried, and then I grabbed the camera. It was a moment even more unlikely than your first step, a moment even I had wondered would ever happen. A moment I refused to let pass without catching it on video and then immediately posting it on YouTube making it the next viral video for the world to see. I have watched the video twenty times every day for the last week. Waiting for it to sink in, all that you have achieved in one year. It hasn’t yet. The little girl you have become, the battles you have won, the war you continue to happily wage, it still hasn’t sunk in. Where did my fragile and frail little girl go? When did you become strong both in stature and mind? When did the endless doubt regarding the quality of your life become replaced with the only life I can now imagine a living; a life with you in it.

Sammy Sue, there is something magical about you. From your debutante moment down the aisle at Uncle Daniel and Aunt Stacia’s wedding, to your perfectly timed “Go” one-week before your birthday, there simply isn’t a way to be around you without believing in miracles. The club we are members of is small yet close knit. The micro-preemie club isn’t a membership we choose and certainly not one I would wish for anyone, but we wear our badge proudly. I often hear of other families going through similar situations. My heart aches for them, for the journeys that lie ahead, for the inevitable struggles and for the potential heartache. Sammy Sue, your story and the remarkable recovery you have made from your inconceivably rough beginning, is a source of encouragement and hope for so many. Almost weekly I am approached and relayed some story of a family using your story of perseverance to get through their own similarly tough situation.

No matter what happens Sammy Sue, no matter what other fabulous achievements you go on to conquer, your legacy has already been written.

 

It has been a year unlike any I could have dreamt. A year I thought would take a lifetime to achieve, a year so many thought impossible. Maybe this is the lesson in parenthood, it just keeps getting better. Or maybe, it’s our lesson, just ours, because the two of you have earned a lifetime of incredible years. I can’t imagine a year that could possibly out do this past one, but then again I have been wrong time and time before.

 

To my four year olds, may each year continue to be better than the one before it, may you always look back on these birthday letters and feel nothing but the pride and love that were poured into them, and may you always continue to do the impossible. Always remember that anything worth having is worth fighting for. And never forget that I will always be here fighting right along with you.

 

I love you and wish you both nothing but the happiest of fourth birthdays.

 

Happy Fourth Birthday!!!!!!!!!

 

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Head Full of Doubt

The wonder of life is the unknown, the inability to know what comes next, the unpredictability of our days, and the anxiety and excitement that is born with each sunrise.

Nearly four years ago, upon the birth of our 23 week twins, my head was full of doubt. The wonder of the life I have just described temporarily died and was instead reincarnated as a life lived with only anxiety, uncertainty and fear. Of the many emotions we have experienced these first few years, doubt was never one of them.

I have always trusted in our ability to make the best of what we have been given, in our ability to provide everything possible for our children, and in our ability to push forward during our darkest days. Of this I have never wavered nor never doubted.

Like all parents, I believe that my children are special. I believe that their skills and achievements are more remarkable than any other. The only difference between me and other parents is that I am right!

When Noah and Sammy were born nearly four years ago, their chances for survival were less than 15%. The possibility that both children would survive was impossibly even less. Specifically, several doctors estimated Sammy’s chance of survival to be less than 10%. Even then, when the doctors told me that Sammy would likely not survive, my dreams for her refused to die. I refused to doubt her, she had enough people in this world doing that already. My job was clear from day one, no matter what it took or how hard the journey, I would do everything in my power to erase the doubt that clouded Sammy and Noah’s arrival. I didn’t know know exactly how we would do it, I was prepared for the destination to be endless and I knew all we needed to do was believe in Sammy and Noah.

To believe in your children means to dream; to want for them all that they will ever desire. The dream for Sammy was born out of doctor’s doubt. Its origin only fueled the life of this dream. The impossibility of this dream made us want it more. The dream; to walk.

This dream is with me every morning when I wake, and consumes me as I fall asleep each night. It has become more than a dream, it has been my life’s work. There is nothing I have ever been more dedicated to and more determined to make possible. There is nothing I have ever wanted more.

Last November, my brother in law proposed to his girlfriend. Their engagement gave new life to my dream. They lovingly asked both Noah and Sammy to be participants in the wedding. For Noah, the task was gratefully easy. For Sammy, the walk down the aisle would be no ordinary task.

For 350 days since that proposal, Sammy Sue has worked tirelessly. She has refused to surrender to busted chins, concussions, bumped foreheads and sore legs. I have hummed the wedding march over 10,000 times throughout hundreds of physical therapy sessions,each time her steps more firm and her confidence more certain. Never has a child fought for something with more tenacity.

Three years after doctors told us Sammy had less than a 10% chance of survival, Sammy Sue walked down the aisle as a flower girl in her Uncle Daniel and Aunt Stacia’s wedding. The moment was something that dreams are made out of. A moment that the two of us have worked for everyday since her birth. A moment that doctors essentially said we were fools to believe would ever happen.

The title of the song which I have chosen for this partiuclar update is one of my favorites. I always think of Sammy, and I will forever associate it’s lyrics with the magic that transpired last night.

There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it
And there was a kid with a head full of doubt
So I’ll scream til I die and the last of those bad thoughts are finally out

There’s a darkness upon me that’s flooded in light
In the fine print they tell me what’s wrong and what’s right
There’s a darkness upon me that’s flooded in light
And I’m frightened by those that don’t see it

 

 

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