Hi everyone! This year we are keeping things simple and sweet with one 5k race and fundraiser. The race I have chosen is October 30, 2010 in Roswell, GA. It is 20$ to register. I want to encourage walkers and runners to come out and join us, as well as cheerleaders on the sidelines, or anyone that can offer a helping hand the morning of the race or simply in organizing and fundraising.
Our goal is to raise more money than last year! I have set up a fundraising page to benefit the Charge Syndrome Foundation, and our goal is set at 1500$. I am hoping to get atleast 10 people to commit to a personal goal of 100$ each, which should be pretty easy by simply sharing our links and Sara's story on facebook, and via email.
Mellow Mushroom Powers Ferry will be hosting a Friday night fundraiser October 22, 2010 with Davin McCoy and the coming attractions, an amazing singer/ songwriter...by far my favorite local musician. Cone out and eat some pizza and listen to some great music and support us!!!
We will also be coordinating an afternoon at Sips N Strokes as another fundraiser..details TBA. Tshirts to wear on race day will be set up in a template on Vistaprint and each participant will be responsible for ordering their own. I have some leftovers from last year if anyone wants to borrow one.
I would love to squeeze in some group runs to prepare. I myself have lots of catching up to do from a long hiatus of not running or taking very good care of myself....so I will be at the Powers Ferry Chattahoochee river trails next Sunday at 6pm rain or shine to get it started. Come on out!!!
That's it for now, keep an eye out for facebook statuses that you can share to get us noticed and get donations coming in. To learn and share Sara's story visit my blog archive "All about my Sweet Sara"
Thankyou for your love and support! Melissa and Sara
It has been a long while since I updated Sara's story..my story of being Sara's mom. After all the buzz over Sara's medical coverage, and our fears that she would be left high and dry...that just simply has not happened. Her very expensive food always comes from somewhere, usually from other EOS parents that have extra..or kind friends and pharmacists with samples and know how. We are allowing her to eat regular food too. The struggle to comply with a totally liquid, tube fed diet just seems like a very extreme sentence for her, especially when we know so many kids with MUCH MUCH more severe symptoms that still manage to eat by mouth. She is very happy about this. We are happy for her. There has been no need for raising medical funds, because she has been doing fantastic. I make the mistake of focusing so much on our struggles, so this time I am happy to report she is growing and learning, and entertaining.. She started kindergarten this year, and we couldnt be happier with her teacher and parapro. They adore her, and she has really blossomed into her own. She has certain activities that she does not care for...physical therapy, occupational therapy..and Math. She refuses to do certain tasks with a kind smile, and we refer to her as sweetly non compliant. She has learned to write her own name quite well, and is beginning to write sentences. She can read tons of words, albeit mostly ones that are to her liking such as, pizza and yellow. She is very independant, helping herself to banana flavored popsicles, and toasting bread when she wants it. She can be a little bossy to her brothers, guests, and mostly to our dog, Ashlee. Today she turns six years old, and I had in mind a long winded tribute to her...my good friend Kelly sent me pictures from that first day in the hospital for me to incorporate. But as I started looking at them, I was just reminded of what a great day that was with my best girlfriends, and how for everything we have been through we still have the same amazing people in our lives, touching Sara with laughter and love and lighthearted spirits.
Lots of ups and downs for sure, but a long winded tribute doesnt really suit my sassy little firecracker. She doesnt have time for that, she is a happy, busy girl. She does love her some yellow markers, yellow clothes, yellow shoes, yellow notebooks, yellow people and pictures though... "Happy Birthday to YOU Sara."
“Training is the opposite of hope”. –Nike slogan 2008
My long term goal is to establish a non- profit organization that will provide financial assistance for uncovered medical expenses of chronically ill children. The costs of caring for a chronically ill child are staggering. In our case, Sara has private insurance coverage, as well as supplemental Medicaid called The Katie Beckett Waiver. The Katie Beckett Waiver is not based on income, but rather medical need and was designed to pay for co pays, premiums, prescriptions and most uncovered medical costs that would otherwise cause hardship for a normal, working family.
This year some changes were made to this program, probably due to funding cuts and system abuse which have made it very difficult to qualify, and just as hard to get actual expenses covered. It is now a system of denials and appeals, and only the most persistent get results. We still have costs of over $1400 per month that is uncovered by either plan. I still ask openly and with amazement, “how can this be?” I exchange ideas and resources with other parents, and find my dear friend Jenny and her sweet baby boy Bryce with a diagnosis of cystic fibrosis does not qualify for assistance, and I openly ask “how can this be?”
I want to do my own fundraising and empower other families to do the same. Ultimately money will go towards either medical expenses, or any unsubsidized item prescribed to address special needs by speech, occupational, or physical therapists, or special needs educator. Families may fundraise on their own behalf, friends and family may fundraise on behalf of specific friends in need, and anyone can apply for assistance from the general fund, and hopefully they will be able to do so with as little red tape and “case working” as humanly possible. I am working diligently to develop a program that will address these needs with as little red tape as possible, but with guidelines that assure money is not misused. My good friend Katie Elwart has volunteered her legal services toward the goal of establishing our non- profit charter. To raise money, we will register in local races, and solicit sponsorships for our participation. Prior to each race, runners will be given a fundraising goal, and a pledge form to collect donations. We will meet on race day wearing our Sweet Sara’s Chargers t-shirts to raise awareness about our project. I am hoping that once we have established ourselves this year running, we can then host our own races and invite runners all over Atlanta to join our cause.
My short term goal is to create a team of runners of all abilities, to fundraise in honor of my darling daughter and also towards my long term goal of starting a non- profit foundation. I am hoping that my efforts to stay active will motivate and encourage others to maximize their own fitness potential.
My specific goals for 2009 are as follows:
*Find at least 25 people to set personal goals, and commit to a training schedule to run or walk on Sara’s team “Sweet Sara’s Chargers” in various running events throughout the year. Each member will use running and walking to fundraise on behalf of the foundation.
*provide 6 meals for families staying at The Ronald McDonald House here in Atlanta. This means catering a meal for 12-16 people on 6 separate evenings. The Ronald McDonald House is a pretty high profile charity that receives almost so much support that providing a meal means being on a waiting list to volunteer there. Therefore, I will not being fundraising on their behalf, just asking for volunteers that can donate time and food to each meal, and possibly help us serve it. We have stayed at The Ronald McDonald House in Cincinnati many, many times, and simply want to repay the kindness and encouragement extended to us there. It is an amazing place.
To join Sara’s team as a runner, a volunteer, or even as a donor, please contact us at firstname.lastname@example.org, and we will add you to our mailing list. Everyone has different abilities, experience and levels of fitness. I encourage everyone to set a goal just slightly out of your current ability and work towards it slowly and carefully… you will amaze yourself with what you can do. You may walk, or run any distance you choose. A 5k race is 3.1 miles, which is roughly the equivalent of 30 minutes of cardio. A 10k race is 6.2 miles, a half marathon is 13.1 miles, and a full marathon is 26.2 miles. Some of those distances may seem a little daunting at first, but with practice and the encouragement of others with common goals, you will get there.
I encourage everyone to ask your employer to sponsor your participation, and anyone you are willing to ask to pledge donations for your efforts. Some employers may even agree to match donations you collect, it’s always worth asking. Donors will be able to contribute online, and also by cash or check. We will provide pledge forms and the materials you need to solicit donations. We will have the t-shirts ready for sale shortly and they will also be part of our fundraising efforts. Our first race is February 28, 2009, so while we get those wheels in motion, start spreading the word.
Here is the first string of races I have chosen for our team, if anyone would like to add more please just let me know. I found them all through www.active.com:
Direct any questions to email@example.com We can recommend an online training resource for your specific goal, or you may find one of your own. I really like Jeff Galloway because his training schedules are conservative and geared towards beginners. I don’t want anyone getting injured! I am no expert, just an enthusiastic runner and will do my best to connect you to the best information out there. We have several experienced runners on the team, but when in doubt, please ask your doctor!
“50/50”- Dean Karnazes "Comfortable with Uncertainty" by Pema Chodron
Quotes: "There is really nothing you must be and there is nothing you must do. There is really nothing you must have and there is nothing you must know. There is really nothing you must become. However, it helps to understand that fire burns, and when it rains, the earth gets wet." ---Buddhist saying
Sara was diagnosed with CHARGE syndrome at about 3 months of age, and eosiniphilic esophagitis around 15 months old. These are both very rare conditions, and even more rare for them to present together as in Sara's case. She was born with a unilateral cleft lip and palate, and here in Atlanta the Scottish Rite protocol is to visit the craniofacial clinic, which includes consultation with a geneticist. Our geneticist suspected CHARGE as well as several other genetic syndromes, and for a short time even cystic fibrosis. She had blood drawn to screen for the syndromes suspected, all of which returned negative. Her blood and sweat tests for CF tested negative as well. At the time of Sara's birth there was no test for CHARGE syndrome, although I do believe they have identified certain chromosomes by now. CHARGE is an acronym for the midline birth defects that may occur together. Sara was sent to many different specialists and had several systems of her body examined and tested before our geneticist would mention CHARGE as a possible diagnosis. A child might have only some of the 6 major diagnostic criteria, and then there are other related minor diagnostic criteria that may be related as well.... no child with CHARGE is like any other. Please take a moment to read about CHARGE syndrome straight from the CHARGE Syndrome Foundation website. http://www.chargesyndrome.org/about-charge.asp their information is far better than I could write, and easy to understand. Sara's CHARGE diagnosis consists of the following conditions: C- Coloboma Sara has colobomas in both of her eyes, in one eye it effects the retina and optic nerve and the other just her retina. This was found during an ophthalmology exam at 2 months old. We do not know yet how this affects her vision. Part of her care plan this year is mapping together her viable field of vision in preparation for entering the public school system. H- Heart defects Sara had a PDA at birth that closed safely without surgical intervention, and a heart murmur which she outgrew by 2 yrs. She received antibiotics for the first two years before all of her surgical procedures, and was eventually discharged by cardiology with a healthy heart. A- choanal atresia Sara had choanal atresia in her right nasal passage. We traveled to Cincinnati every three months for nearly three years for a series of surgeries/ dilations, and several sets of nasal stents to keep the tissue in her sinuses open. Her scar tissue liked to grow like crazy after months of wearing stents. She suffered from obstructive sleep apnea and stridor for the first three years, and usually slept with a pulse ox monitor, and blow-by oxygen to keep her oxygen saturation at a normal level. Her tonsils and adenoids were removed to make even more room..and we hope to avoid nasal dilations in the future. We thank God and the doctors at Cincinnati Children's Hospital Medical Center everyday for sparing her a tracheotomy. E- ear malformation Sara has the characteristic CHARGE ear, low set and missing part of the helix. She also has mild conductive hearing loss. She has PE tubes in both ears, placed at 2 months old.
cleft lip and palate- Sara had a severe unilateral cleft lip and palate at birth that has begun to be repaired surgically. At two months she had a Latham oral device placed to minimize the width of her cleft. At four months she had her first plastic surgery to construct her lip and nose. She had very serious complications after this surgery and was on life support for over a week. We learned later that this was because her choanal atresia had gone undiagnosed. She had her first palate repair at 12 months and had an unusually long, complicated recovery in the PICU at Scottish Rite, once again because her choanal atresia had gone undiagnosed. She still has fistulas in her palate and needs more surgery to complete her reconstruction.
torticollis- Sara's neck favors one side. She was referred to PT at 2 months. This is probably due to blind patches in her vision combined with weak muscle tone in her neck.
hypotonia- Sara has low muscle tone throughout her entire body, including her tongue and swallowing muscles. She is g-tube fed because she aspirates liquids when she swallows.
GERD- Sara has had GERD since birth and has been medicated with prilosec to manage it. This diagnosis lead to another diagnosis, unrelated to CHARGE syndrome called eosiniphilic esophagitis, which is a major challenge in Sara's health and overall well being. We have not met any other CHARGE kids yet with this diagnosis.
Reactive Airway Disease- this is essentially asthma in young children. Sara receives breathing treatments of pulmicort daily, and albuterol frequently as needed. When her upper airway becomes tight or congested, it usually triggers aggravation and fatigue in her lungs.
developmental delay- Sara is nearly five years old and seems about two years behind developmentally (gross motor skills more so than fine motor skills, speech severely delayed). We attribute this to her hearing and vision impairment and frequent hospitalization.
OCD/ autistic type behaviors- These are a little more difficult for me to share and explain. Sara bangs her head and hurts herself when she does not get her way, and often times it is a random whim that seems to come from nowhere, and quite predictably about food she cannot have due to her allergy; eosiniphilic esophagitis. She obsesses over certain movies and children’s shows, wanting to view them repeatedly, literally several hundred times. Eosiniphilic Esophagitis Totally unrelated to CHARGE syndrome is eosiniphilic esophagitis. My layman’s explanation is that, in Sara's case, she is allergic to almost all foods. Sara was referred to Cincinnati Children's Hospital Medical Center in Ohio for a rare airway obstruction called post- crycoid hemangioma. It was a cluster of blood vessels that had built on her vocal chords, and whenever she cried or created pressure struggling to breathe through her constricted nasal passages, this mass of tissue would inflate with blood and completely obstruct her windpipe. It was removed in a series of several laser surgeries. Because of her complicated sinus, digestive and lung history, she was automatically tested for all sorts of things while under sedation in Cincinnati. This is where eosiniphils were first discovered in her esophagus, where they do not belong, which then lead to the diagnosis of eosiniphilic esophagitis. Regular food causes reactions in her esophagus that create long term, irreversible damage. Her diet is almost exclusively a powered amino acid based medical food called elecare, delivered via feeding tube. To learn more about eosiniphilic esophagitis here is a great site: http://www.apfed.org/ Click on the informational video "Life without Food". Now that I have typed all of that, I realize that if you have not ever had the pleasure of meeting Sara, you might think that she leads a pretty depressing, awful life, but that is just not the case. She is full of love, and light, and spunk, and laughter and energy. She is so funny, and such a precious, life changing treasure to just about everyone she meets. She is overall, a happy child. She loves to dance, and to torture her big brothers. She is learning sign language, playing with Bratz, chasing the dog, bullying boys in her class and making me proud every single day!
My family has suffered for close to five years now, with sporadic relief. I work very hard to find happiness through that suffering, to remain positive and optimistic, strong and steady. I do not have a perfect record, that’s for sure, but I try. When I fail I think it catches people around me off guard, and they of course, being kind and caring individuals want to comfort me. There is a breathless moment I sometimes encounter when someone offers a very simple, well meant, already exhausted solution to whatever issue might be bobbing in our family current. I begin to explain Sara’s rare conditions, which leads to more explanations about her other rare conditions…which then leads to me speaking rapidly trying to lay out our complicated roadmap of effort before this present turmoil….and sometimes..not always…my listener begins to drift away and probably count their own blessings, or just wish that they had never asked in the first place. I can’t say that I blame them. I have learned to just plug a cork in it, and keep my complaints and explanations short and sweet. Most people around me know that I am a single mom with three kids, and that I have an unusual daughter with special needs….but I don’t really talk about it at length with anyone except my parents, my ex husband, and my boyfriend. There is simply not enough time, and honestly not enough common knowledge of those sharp particulars and confusing details. I choose not to sacrifice even more precious time that CHARGE syndrome, and Eosiniphilic Esophagitis might threaten to unnecessarily take away from me, and my precious family that needs so much more than they are getting. On a page, it is easier for me to share, because frankly that breathless social moment is a polite formality that I detest. Perhaps by now I should have learned to handle myself with more grace and strength. I pray for both grace and strength, but at the same time I hope they fall in line behind Sara’s ability to breathe and understand, or rest for Griffin and Grant’s weary little spirits. I prioritize easily, even my hopes and emotions.
I have mastered the short run. I have surprised myself time and again with my capacity to bend the path of where I thought I was going, what I thought I needed, and certainly what I wanted. I have recited the serenity prayer to accept the illness I cannot change, the healthcare policies I cannot change, and for the courage to change my outlook, so often crowded by seemingly insurmountable tasks from downright bleak to one of hope, and to never stop searching for any little part of this daily battle that I CAN change. I don’t know that praying for the wisdom to know the difference has really worked yet…. That’s all great, but I am really ready for whatever lesson it is that I am missing to master the long run. I am praying now to learn: How do I keep this pace forever? What am I doing wrong, because I am running out of steam and I sure do have a long way to go. I don’t feel as if I can’t do it. I know I can, I just don’t know how. Having written all of that, I will wake up tomorrow morning, and after a strong cup of coffee move through the motions of my day. I will sincerely believe in my heart that there will be more happy minutes than any other kind of minutes. Just as sincerely as I hurt and obsess over my long run, I will sincerely smile and laugh with those around me. The very act of leaving the painful truths behind on a page somewhere, makes those minutes of happiness feel genuine, and they are. I surrender to this evening; this day that brought me to my knees,it is ready to pass….. This morning I stood in the window of a public service agency and cried tears of joy that a medical expense of $1170 per month will not be squeezed from the dry rock of my family budget. The state employee that pulled up Sara’s file cried too, and so did her co workers. That is a sharp and welcomed contrast to Nancy, the intake coordinator at Apria healthcare that has been the bearer of bad news and bad attitude for the last 7 days. We have been given several months to rearrange her care plan. I must admit, my pumpkin spice latte’ tastes much sweeter this morning. Once again God has filled the void.
I've never been an especially patient person. I have always been OK with that because that means I am excited about fun times, reasonably nervous about things on the horizon, in motion, going places; doing things, growing and being a more successful me. As a young mother of two beautiful healthy boys it never occurred to me that anything idle could be worthwhile. The very essence of two young boys is constant motion. I was master of my high energy domain. I was content with my life as a stay at home mom, and my tight little world of 148 Dials Drive.
My third pregnancy quite honestly didn't scare me, but the prospect of adding another creature that needed food, shelter, and attention sure did. The boys were so young and only 15 months apart. How would I care for three? My husband had just been promoted and was now beginning to travel. I was on my own with them most of the time while he worked, and very overwhelmed by the idea. As the trimesters expired we learned that we were expecting a girl this time around, and I was of course very excited, as was everyone around us. I was seasoned at this pregnancy stuff and I had it relatively easy. My biggest worry was where to find poodles to decorate her walls. I laughed and smiled and planned with my girlfriends, as she was the first baby girl in a while..we were all caught up in a wave of toile and tiny pink Adidas shoes. It was one of the happiest times in my life, oozing with love and a righteous, naive happiness.
I had a history of big babies, so I was set to be induced two weeks before my due date. My prenatal visits were quiet and uneventful. I did not ask many questions, because I already knew what to expect. I checked into labor and delivery on the big day with my hair neatly styled, light makeup and pearls. It was a day of celebration because me and my husband, and my mother, and my two best girlfriends were welcoming my baby girl into the world. We talked and laughed all day as the pitocin dripped and the epidural numbed any and all contractions. I labored peacefully and watched the girls play poker. Bill read the paper. I watched TV. We joked with our labor and delivery nurse and with each other about how shy I was about anyone seeing my nether regions, still hung up on that even the third time around. When it was time to push none of us ever thought to be scared, we were all just excited to see this baby girl we had talked so much about.
I only remember a moment of the pushing, and hearing "She's almost here Melissa"....and then there was just silence. Every one's faces went gray, and no one would look at me. The doctor removed her and placed her pink little body on mine, loosely wrapped in blue medical dressing, and my hand went straight around her wet little abdomen. The nurse asked the doctor if this was anticipated...was what anticipated?.....I laid eyes on my newborn baby girl, and through my unprepared perception, half of her face was missing. She had only half a nose, and half a lip..and a hole right where the other half of her nose and lip should be. She wasn't crying, and no one would say anything. I simply began to say "no"....just "no" over and over again.
The nurse grabbed my arm firmly and expressed to me that it was only cosmetic, easily fixed by the wonders of modern plastic surgery, everything would be just fine. She still wasn't crying. My family and friends stood there in silence until she finally began to sputter and cry. I don't remember how it sounded now. I wish I had the presence of mind to have been in the moment, but I was in shock. Finally she was handed to me for a moment, and I wrapped her tiny fingers around mine. She had my grandmothers hands. I told everyone to start taking pictures, and to be happy. I certainly didn't want her to think we weren't happy to have her. We snapped a few smiling shots before she was whisked away to the NICU. Bill of course went with her. All the ladies excused themselves because the confusion and despair was unbearable. The bustle of childbirth subsided, and the room cleared of hospital personnel.
I was alone and crying for what seemed like an eternity in that hospital room. I cried for all the things Sara had taken away from her already. For the cruelty she would face for being different. For the ridiculous superficial hopes and dreams I had unfairly projected on her, and for all the lazy but sincere assumptions that she would be perfectly healthy....I cried over my body failing her despite what anyone tried to explain to me to the contrary and for her brothers that would surely be shocked and scared and upset, and for the desperate fruitless inner search for ways to protect her from all the pain that she was guaranteed in countless forms, and for the shock and awe of this first time in my adult life that I felt completely, and utterly helpless.
That feeling of helplessness continued as she struggled to feed and had to rely on a nasal feeding tube to get all of her nourishment. Then she struggled to breathe, and to digest food properly. I was discharged before she was, and those first few weeks were the toughest of my entire life. I was pumping breast milk around the clock, both the boys came down with walking pneumonia, and we were traveling to and from the hospital several times a day for feedings and visits, and updates...and rides on the daily medical roller coaster with threats of open heart surgeries, terminal illnesses and lifelong disabilities. I was taught how to place an ng-tube down her nostril and past the back of her throat all the way down into her tummy...and how to run an enteral feeding pump, and how to prime an IV style feeding bag. I was assured this was all temporary until she picked up feeding a little better. She came home with a diagnosis of cleft lip and palate and severe GERD as the reason for her feeding issues. I was instructed to pump breast milk and feed it to her via this pump..and then sit and hold her upright and perfectly still for at least an hour after each feeding. Aside from the many doctors visits and time in the bathroom pumping breast milk, I sat in a rocking chair in our living room almost 18 hours a day, holding our precious baby girl perfectly still.
From the vantage point of my white glider rocker with custom black gingham cushions, meant to match Sara's black poodles, I could see only a few things; the street and trees outside, the corner of my front porch and the red geranium hanging from its awning, and the fact that my life would clearly never be the same.
The show had to go on, and so our mothers had stepped up to help with the boys. Bill's mother lived with us for the entire first month. Friends sent help, came over and cleaned my house, hired babysitters, housekeepers, cooked food, ran errands....all the while I sat. It was Spring and the Bradford Pears and Peach trees were in full bloom. The leaves were fresh and new and flowers were pushing up in my flowerbeds. The world was still turning even though mine had stopped, and sitting there while others did my laundry, and mothered my boys, and sifted through my filthy refrigerator was unbearable and completely against every grain in my body.
In the geranium hanging on the front porch a momma bird had built a nest shortly before Sara was born, for the second year in a row. I thought it was kind of cool but certainly didn't pay her much attention except to acknowledge that we had a bird nest in our plant as we came and went about our business. She was back this year, and her eggs had hatched sometime around the same time Sara was hatched. I could hear the baby birds yelling at momma bird for food. When I would go and look in at her nest she would fly away and yell at me from a nearby tree branch, while her babies open and closed their shaky little beaks..croaking and crying for her to hurry up and get more food. She flew tirelessly from the nest and then back to the nest with food for her funny little starving babies all day long. I imagine now that if momma bird and I could have talked we would have joked about needing a margarita..or maybe, where is daddy bird now? But I just continued to wake up everyday and do the best I could, and so did she.
Momma bird flew into the house one day and straight into the glass of our back door...knocked herself out cold. With the front door still open I could hear her babies screaming, and I panicked over the thought of them losing her now. I picked her up in a towel and laid her limp body back into her nest with her babies. They continued to scream for food, unaffected by their lifeless mother, and I began to cry. Several minutes later Momma bird woke, shook her little head straight and flew off to find more food as if nothing had ever happened. Babies still need food whether you have a concussion or not. I don't think Mother Nature could paint a more accurate portrait of motherhood than that.
Eventually the time came for Momma bird to kick her babies out of the nest. It took her one full day to do it. She had a couple of precocious little guys that flew right out from nest to rail post, then to the ground, then back to the rail post. All the while she stood in her tree branch and chirped encouragement to the meeker ones left behind. The last little bird enjoyed a chorus of enthusiasm from his brothers and sisters..and when it finally descended shakily to the rail post they all erupted in what I like to believe were cheers and laughter. I sat with my little boys in sheer joy and watched them all practice flying in little spurts from branch to branch. It got harder by the end of the day to tell Momma Bird from her babies, and eventually they were all just gone.
I am of course out of the rocking chair now. A geneticist lead us down the winding road of tests that gave Sara a more complete diagnosis of CHARGE syndrome. We bought a computer and through it I connected with other mothers and parents of CHARGErs, and they saved my weary spirit from despair, and literally Sara's life with advice for out of town referrals and care plans. That idle time that I so detested at first, gave way to many thoughts, that then gave way to many words that I couldn't help but express somewhere, and I began to write again. Writing has given me a sense of purpose that I didn't even know I needed until Sara came along and forced me to see who I really am. I didn't have the time to plant a new geranium the next Spring, so no Momma bird set up shop on our porch again. I am still supervising and encouraging the flying skills of my own baby birds. Sara had a bumpy road there at first with many surgeries and scares, but took her first steps shortly after her third birthday. She decides her own pace, and I follow her cues. Griffin learned that year that he can switch hit in baseball, and discovered his very own entrepreneurial instincts. Grant learned that he is custom made for football and received the principals award for goodwill and leadership that year at his kindergarten graduation. I learned that it is true that God never gives us more than we can handle, and I will always somehow find a way to shake my head straight.
God fills the void When sara was born and we were just desperate for help, answers, extra hands to hold our children...anything really that was better than the helplessness of our babies' strife we found that many of our friends and even family did not have an extra hand, time, or even the right words in them to give. I thought at the time that I was let down by many of them. I was brought to my knees, violently humbled by the fact that I am not in control. I came to learn that just because you need something, those familiar to you may not have it to give. But somehow God fills the void. For every friend that was too busy to slow down and see our new life, or walk slowly next to me during the frustration and uncertainty of raising a special needs child , there was a new friend...excited to hold my baby girl and praise the good job I was doing getting through the day. For every moment that passed sitting in the rocking chair, tube feeding my sweet, gentle little creature..where I could see the rest of the world cruelly whiz by, continue to speak of trivial things...watch TV, eat dinners, paint nails, match their clothes, and even hug their other children..hell whatever little thing I took for granted before....God gave me admiration from others that had chosen to slow down and were able to see me in a new way I hadnt thought I would ever like. They reminded me that patience is a virtue, and my struggle to find it was not a burden, but rather an inspiration. And so I find that everytime I am hurting, and my heart is spewing at its jagged edges, laid out for everyone to see because I cant hide it very well...God fills the void with kindness and love. Just when I think I'm about to fall, I am caught and helped to my feet by the most unsuspecting fans. God fills my voids with new people when unhealthy ones exit. And those new people renew my faith in the prospect of goodness and humanity. I get back what I put out, one way or another..its never as I pictured it, but always enough.