We are very pleased to bring you Smarty Mom Amber Greenawalt. She was “mominated” by friend Amy Warren, a Smarty Pants guest blogger. We will let her provide the introduction:
Several years ago, when my son was first born, I joined my area MOMS group. Amber was just exiting her role as President of the club, but took the time to fill me in on the details. I was impressed with her enthusiasm and how detailed and organized that she was, but at the time-our paths just didn’t cross much. Fast forward a few months later, another mom in the MOMS group sent out an email that Amber’s son had been diagnosed with a disease that would be treated at an oncology clinic. She sent along the link to Amber’s amazing family blog, and from there, our friendship was born. Working as a Child Life Specialist in the hospital, I decided to call up Amber to offer some support. Since then, we have found that we have a lot in common and I am just so in awe of her ability to handle adversity and still live life to it’s fullest. . She maintains her blog as a legacy to her family, manages to run a household with 3 children under 5 years old, and plans amazing parties and social opportunities for the women and families in our neighborhood. She has been such an inspiration to me!
Amber, you have multiple things going on in your life right now – how do you balance it all?
With a lot of help. And a “to do” list!
Life is full of chaos in Motherhood. We all get distracted. We lose our balance. We forget things. We yell. We get emotional. We criticize. We make mistakes…sometimes really big ones. At least I sure do.
When I am honest about my own mothering, I have to admit that I fail just as often as I succeed. Often it seems my children need opposite things at exactly the same time. I wish I had more of me to give. I lose my patience and I get completely frustrated. Sometimes the effort of dealing with a situation proves too much for me. I have days where I feel like I can conquer the world in motherhood and others where I’m at my wit’s end-wishing I could just go curl up in a corner and give up. Sometimes that range of emotion takes place all in one day.
As hard and exhausting as that sounds, it is that fullness of emotion that I love about motherhood. I’ll take worry that gnaws at the pit of your stomach and heartache that sheds many tears if with it brings love that makes you want to burst, happiness that makes you float, and a desire to nurture that sends you on the errand of angels. Being a mother fills me with purpose and for this I am grateful.
Is it fair to ask do you have moments that you just have to take a break to get the sanity back?
Absolutely, see the first question.
Please tell us about each of your children and what they are going through?
I have three wonderful ultra-outgoing and energetic children, Sebastian 5, Siennah 3, and Savannah 18 months. (I also have one heck of a fantastic husband, Brian, who totally keeps me sane.)
Sebastian, our firstborn is our red-headed wonder. He has my freckles, dimples and stubbornness. At five years old he is ridiculously funny and boundless in energy. I wish I could bottle up some of the gusto that he displays daily for life. He fills our days with giggles, silly jokes and an almost constant sound track of race car sounds and space ship noises. He is bright and boisterous, sweet and sensitive, expressive, thoughtful and kind. Really, all that a Mom could ask for in a little boy!
At the age of three Sebastian was diagnosed with Multi-Centric Osteoclastoma—Giant Cell tumors that destroy his bones. His presentation is exceedingly rare as these types of tumors do not usually occur in children or simultaneously throughout the body in more than one location. He has had five surgeries since diagnosis including a craniotomy to remove a golf ball sized tumor from his skull.
Giant cell tumors are locally aggressive and have a 60% chance of recurrence. The treatment for him is repeated surgery. Which means that we wait to see if the tumors grow back or more develop and then cut them out with radical margins. He is followed closely by his team of oncologist and surgeons. Sebastian has had three sets of bone scans and CTs that have been blessedly clear. He has been such a strong and brave boy throughout this whole ordeal and I could not be more proud of him!
Siennah is our middle child. I call her the keeper of the middle of my heart. She has big brown eyes with eyelashes that go on for miles, bouncy curls and a sweet dimpled smile. Some days I think it’s her smiles alone help keep me afloat. I believe that the Lord sent us this funny, sunny little girl to add a healthy dose of levity to our life. She is bubbly, beautiful, expressive, independent and smart. Crazy smart! She has a vibrant personality that radiates happiness. People flock toward her as if the sun is warmed by her company. I am thoroughly convinced that it is. I never cease to be amazed at how she spreads joy to so many people solely by her warm and affectionate nature. She is always there with a quick hug or a kiss to cheer someone up.
My worry for Siennah is that she gets enough. Enough time. Enough attention. Enough love and kisses. Enough of me. She doesn’t get the one on one days at the doctor that her siblings do. So I make an extra effort to make sure that we have some special time for just the two of us.
Savannah at 18 months is a tiny package of heart wrenching charms. You would think that by the time she came along I would have this mothering business down…but she has brought lessons all her own. On the outside, Savannah looks and acts like a normal burgeoning toddler. She is smart and mischievous, ornery and loving. She has curly dark blond hair, slate colored eyes and the sweetest dimpled smile that will win the hearts of anyone who sees it. But on the inside of Savannah, there is a battle going on at the cellular level. Savannah has mitochondrial disease complex I and complex III.
The complexes are part of something called the electron transport chain, also known as the respiratory chain. This has nothing to do with breathing. The reason it is called the respiratory chain is because mitochondria, sub cellular organelles, oxidize sugars and fats to produce chemical energy called ATP so your cells can live. Mitochondria produce 90% of the body’s energy. Without energy, organs and muscles fail.
Mitochondrial disease is very hard to diagnose and there is little awareness of it, even among doctors. She’s had more tests, surgeries and procedures than I can readily recall with acronyms in just about every combination of the alphabet as we tried to figure out the cause of her multitude of symptoms. Our hearts ached time and again as her watched her get poked and prodded for test after test, struggling through one illness after another.
When Savannah was ten months old we took her to Atlanta to see one of the leading mitochondrial doctors in the nation, to have a consultation, and fresh muscle biopsy performed. Many consider this to be the “gold standard” and sometimes only way to test for mitochondrial disease. After nearly a year of searching for the root of Savannah’s medical issues, and 3 weeks after her first birthday, we received a diagnosis.
Savannah is being followed by more specialists than she has letters in her name…they are all keeping a close eye on how this disease affects each organ in her body. She takes numerous medications throughout the day to help her mitochondria absorb more nutrients to produce more energy and to keep the infections she is sp prone to at bay. She has good days where she looks like a normal toddler exploring the world at lightning speed, and she has “off” days where she cries her way through therapy, experiences muscle pain, battles and infection and sleeps in utter fatigue. We have learned to change our lives and adapt as we go along. There is no road map or instruction manual for having a child with mitochondrial disease. It is a chronic, progressive, and currently incurable disease. We are thankful that Savannah seems to have a milder form of this disease than some, for we know it can and possibly could become worse. We don’t know what may lie ahead for her and that fact is crippling at times.
What we do know is that God has given us the grace and strength to enjoy each and every wonderful day he has given us with our precious children…and for each day, we are thankful.
What is the biggest lesson you have learned from going through the experiences you have?
Life is not fair; but it’s still good.
These past couple years have taught me to cherish each day because, crazy or not, good or bad, I have that day. I get to be with my kids and that darling husband of mine. I can walk, run, talk, teach, feel… and it’s so easy to take all that for granted. I’ve learned to slow down and enjoy the now, to put as much as I can aside and focus on what is most important and to not let the hard stuff get in the way of experiencing joy.
It is difficult, yes. My life is far from seamless and easy. I spend my fair share of time bemoaning, “why me?”, “why us?”, “when the H. E. double hockey sticks are we ever going to catch a break!?”
But the way I see it, I have one choice: To find contentment and joy in the midst of the challenges. And it is there. In an abundance of minute fractions—It’s Brian finishing one my sentences, it’s a kiss from my pig-tailed Siennah, a big bear hug from Sebastian or a dimpled smile from Savannah. These are the countless infinitesimals that make my life wonderful.
Sure, not all moments are magical and the outlook isn’t always sunny. When one of my kids is sick, I’ve held them in my arms and whispered reassuring words, while silently praying to take away their pain and for swift healing. What I have learned is that together we somehow always make it to a brighter day.
Sometimes I think my children know this better than me. I remember when Sebastian woke up from one of his surgeries he spent some time telling his PACU nurse about his Disney Make A Wish trip that was soon to come true. He was in quite a bit of pain at the time and still with a smile he told her, “I have been a brave boy so I will get to have my wish.” What really struck me in that moment is how he never once wallowed in self pity. At his young age he’s never had the capacity to wonder “Why Me?” He’s focused on the prize…the good stuff, the light at the end of the tunnel.
Like Sebastian and his wish I’m try to focus on positives. Everyday I wonder at the abundance of love and the richness of life that has come to me by the Grace of God. So…Instead of focusing on lemons, I’m doing the best that I can to make lemonade.
What advice do you have for other families facing the same issues?
Give time, time. –Chasing down a diagnosis can be frustrating…actually getting one can be devastating. You will probably be overwhelmed in the beginning. Give your self time to process the enormity and the implications of it. This does not mean that living with and raising a child who has a medical condition will get easier but it does get better. As time passes you adapt.
Yield.–-Every stage of dealing with illness is a process. Well meaning people will tell you to be strong and hang in there, but the truth is that you are already doing that. You will pick yourself up by the bootstraps and plow forth because that’s what needs to be done. But, it’s okay not to be strong all the time. It’s okay to be hopeful and hopeless, scared and courageous, angry and optimistic, enlightened and heartbroken all at once. It’s okay to fall apart, even if it’s in front of others. Revealing feelings does not diminish your strength.
Find support.—When you are ready, seek out the support of others. Your are definitely not alone. While no one else can truly understand exactly what you are going through the people already in your life or who will come into your life are a gift and serve a purpose. Don’t be afraid of asking for assistance. They want to help. Try and support someone else along the way. There is incredible healing and growth in connection.
It’s up to you to go to bat for your child.—You know your child better than anyone else and you are your child’s greatest advocate. Trust your instincts and don’t assume that professionals know better because they have credentials. It isn’t always the case. Especially with mitochondrial disease. I have had to explain the disease to several doctors.
Pray.— I have found that God is reflected in the brokenness of life. When this broken life has knocked me to my knees I have been humbly reminded that it is the best position to pray. When I have felt overwhelmed, exhausted and very much alone—the Lord has been there, willing to be my comfort and strength. I have found that putting my trust, my frustrations and even my fears in His hands gives me peace like nothing else can.
Fight back—For me, getting involved with organizations that promote awareness and fund research has helped me to focus on being a part of the cure.
Have fun.—The principle business of life is to enjoy it. When things are falling apart, it is easy to lose sight of what we enjoy about our children and not find time for the good stuff.
Learn the Lingo and be Organized—One of the things that has helped me the most is becoming as educated as I can be on my children’s medical conditions. Remember, this is your child, and the situation has a profound effect on your life and on your child’s future. Therefore, it is important that you learn as much as you can about your situation Learning how to formulate questions and what to ask makes things a lot easier. I also request copies of all medical records and keep them along with my own notes in three-ring binders.
What has been the biggest help for you and your family?
The people who are a part of our life.
We are exceptionally blessed to have an incredible network of family and friends. I’m pretty biased but I think they are the best!
So often this wonderful and eclectic group of people are the thread that has brightened our days. From near and far they have supported us. They have cried with us, screamed with us and stormed the heavens with prayers for us. They have called to check in on us and when we have not answered they have called again. They have visited us in the hospital and have waited through surgeries with us. They have kept us fed on the days where marathon appointments have kept us too busy to cook. They have watched our children in various combinations while we take one or another to the doctor. They haven’t waited for us to reach out to them. They have picked me up and dragged me to the movies, endured almost daily phone calls on my rides home from appointments, sent countless encouraging comments and pep talks our way. They have been willing to love us with out thank you cards, or e-mail responses, even the blubbering mess that I can be. Never expecting that we be strong or move on, they’ve just been there.
And when we were ready to fight back they have even helped us to help. For the past couple years we’ve had a team in the American Cancer Society’s Relay for Life called Cancer Commandos. Our team has been 75 people strong and together we raised over $12,000 for the American cancer Society. This year I will be co-chairing the first Energy for Life walk for Mitochondrial Disease in Charlotte on September 18th at Freedom Park in Charlotte. Several of our friends have already stepped up to Committee member roles. We are organizing a team called Saving Savannah and I know I can count on so many of our friends and family to come out and walk with us in honor of Savannah.
We are also blessed to have found our way to a bunch of fantastic doctors and therapists who are not only capable but compassionate. I would really be remiss to not thank my lucky starts for the great team each of my children is followed by.
I don’t know that it’s possible to fully express the depth of my gratitude for the people in my life. Without them life would have less laughter, less fun and a lot more anxiety. Because of them my life is stronger, fuller more beautiful and gracious.
You have your own blog, is it cathartic to write about what your family is doing and going through?
I started blogging in October 2007 with a “why not… everybody else is doing it, let’s check this thing out” sort of attitude. What I didn’t know then, was where those first few posts on my fledgling little blog site would take me. There was no way for me to know then how my life would change. How I would change. Through the years my blog has evolved right along with me. The act of blogging itself has come to serve many purposes.
First and foremost, I blog because I love my life. Blogging encourages me to slow down and process those little moments in my day that I used to treat like white noise. Time spent in the waiting room, conversations between my kids, a two week cootie infestation that takes out our entire family. The stuff that flies by in a blur but in actuality is where I do my living.
I definitely find blogging cathartic. I consider it to be ‘free therapy’, being able to work out my thoughts and feelings, and to find answers to problems with input from family and friends is pretty darn amazing. Blogging offers great opportunity for self-reflection. Through writing about my life I have come, to know myself better. I find that sometimes I can’t let go of the thoughts swirling around my head until I type them out and put a punctuation mark on them. Blogging gives me a place to do that.
Plus blogging gives me a record of our crazy life story. My kids say some truly funny and ironic things and I want to remember them. Even the crummy and painful stuff needs to be chronicled. Someday, I might have a friend whose baby gets sick and I will want to, need to, remember what it was like. Sure the memories may be very vivid to me right now, but twenty, twelve or even two years from now I probably won’t remember how I was feeling.
For me, blogging is also an easy way to disseminate information. Many parents of children facing some sort of medical crisis start Caring Bridge sites to journal their experiences and keep everyone updated on what’s going on. Since we already had a blog in place that could serve the same purpose we decided just to use it instead. It spares me having to answer complicated questions in the hall-way at preschool and allows me to give the minutia of detail for those who are actually interested.
Blogging also gives me a way to share the many photos that I take. My photography is a reflection of who I am, what I see, and what my life is all about at the moment I press the shutter. It freezes that moment in time perfectly, and effortlessly. You know how you hear an old song on the radio, and it takes you back in time to a great memory, or a sad moment in your life? That’s what my photos do for me.
Siennah is only now 3, yet without photos I wouldn’t really remember exactly how chubby her legs were as a baby, and how bright her little eyes twinkled when he smiled. I would never have realized how her little sister looked just like she did as an infant. My blog gives me a place to put those photos and share them. It’s like having my own art gallery with personal journaling.
My greatest enjoyment about blogging has always been connecting with fellow bloggers and readers. It’s all about commiserating when things go wrong – and celebrating when they go right. Because when you get down to it, blogging is all about community. I’ve found other people who face similar or different challenges, whose easy way with words and quick wit are inspirational.
I also really enjoy the feedback. Without readers and comments, all we bloggers would be doing is talking to ourselves. And while there’s value in that as well, it’s the feedback, the brainstorming, and the knowledge that others are getting some kind of enjoyment or usefulness out of what I have to say that makes the time spent in front of the computer screen trying to think of the exact right words to express myself, completely worthwhile.
How do you make time for yourself and what is your favorite thing to do when you make that time?
I find that routines help a lot when it comes to carving out a little “me time.” Everyday when I get my children home from school they have a snack and then I get all three into their beds for naps. This one blissful hour (sometimes two if I’m lucky) gives me a chance to get some stuff done at home. My oldest sometimes does not actually sleep but he knows that it is quiet time. We also put our kids to bed every night at 8:00 p.m. Then Brian and I converge in our bonus room and just hang out. I read, surf the internet, blog or just get lost in a good television show. Every night I enjoy a relaxing hot bath. There is nothing quite like a hot bath to unwind at the end of the day. It also helps to have a great husband who watches the kids for me at least once a month so I can get out for a girls night.
What is your favorite date-nightspot?
Dinner and a movie is our usual preferred date night activity. Arysley, Stonecrest and Carolina Pavilion are great spots for this classic kind kid-free fun. We’ve planned some other great excursions through the years. My favorites have been snow tubing, white water rafting, going to football games and getting a couples massage. Saturday mornings, Brian and I also enjoy taking a yoga class together. It’s only one hour but after a long week it gives me a chance to restore my inner harmony and reconnect with Brian.
What is your favorite place to take the whole family to dinner?
I am Cuban and grew up eating yummy island dishes my relatives made. I haven’t had much of a chance to enjoy that kind of food in Charlotte until A Piece of Havana opened. Their food is authentic, very reasonably priced and delicious. Our kids also flip for Red Robin! The bottomless fries are a big hit with our big eater Savannah and they all love the free balloons. Tuesday nights are especially popular because Red Robin himself makes an appearance. Don Pedro’s is another favorite. The chips and fresh salsa make for great munchies while we wait for our food and the free dessert is yummy!
Favorite family activity?
Our kids love to be outdoors! We enjoy going for long family walks or runs with our jogging strollers. Our neighborhood has a couple wonderful trails for hiking and we also have some great local parks we like to explore. In the summer we like to go to the pool and get ice cream at Bruster’s. Since the cold weather has had us indoors lately we have been enjoying playing our Wii, watching movies and having dance parties. It’s super silly and super fun!
Smartiest way you save $?
I buy and sell my children’s clothing and toys at local consignment sales. These events are like garage sales on steroids. There is always a huge selection of items for sale that have been prescreened to ensure that only quality, gently used items appear on the sales floor. I sell items that my children have outgrown or longer need and use the money that I make to replenish their wardrobes. My children are still young enough that they don’t know the difference between brand new and second hand. I have taken items purchased at these sales and given them as great Christmas presents! One time I bought a huge Sterlite container full of Geotrax trains, tracks and buildings for $25. Sebastian was delighted on Christmas morning to see it all set up. Craig’s List and Free-cycle are great places to find bargains in between consignment sales!
What is the best book that you’ve read lately?
I found reading The Shack to be a spiritually edifying experience. It’s an inspiring narrative about redemption, grace, forgiveness, healing and love indescribable. The imagery in the book helped bring clarity to areas of my faith that were confusing and gray. It made me laugh and cry –sometimes even sob! The beginning is hard, painful even to read and at times throughout the book I had put it down because I had to consider how the words touched my own history. I came away from reading it feeling loved and secure with a strong desire to cultivate my relationship with God. Amazing book! I have recommended it to my family and friends and have even bought a few copies and given them as gifts.
What is the best movie that you have seen lately?
Avatar was pretty darn incredible. The jaw-dropping visual effects were absolutely stunning. It’s almost as if the movie screen was just a window into another world! It’s definitely un-like anything I had ever seen before But it wasn’t just an eye candy buffet. The thought provoking story line is sadly believable and moving. If anything I would say that the movie is such an intense experience that I need some time before I can process it again. Seeing it with the 3-D Buddy Holly glasses is worth every extra penny.
Funniest thing that your children have ever done?
This was actually the hardest question to answer. I think our kids do something funny on a daily basis! It’s half of why we keep them around. For entertainment! Yesterday Sebastian and Siennah were looking at a place-mat that had shapes all over it while I was un-loading the dishwasher. I could hear them identifying the circle, the square, the oval, the diamond…. Then I heard Sebastian say, “Cepticon”, “Cepticon”, It sounded like something out of the movie Transformers but I know that he has never seen it. I came over to the placemat and realized that what he was talking about were a hexagon and an octagon. It was pretty cute!
What moment are you most proud of with your children?
I can’t pinpoint an exact moment. I am proud that they are accepting of children who are different or have disabilities. One afternoon at the Neurosurgeon’s office I was getting exasperated by being stuck in the waiting room for 2 1/2 hours. Sebastian on the other hand had found a red balloon and coaxed a little girl, bald from chemo treatments into playing with him. When they were tired they sat down by a window and showed each other their scars. It was such a sweet and poignant scene. Compassion just seems to come to Siennah naturally. Even though spats come often with siblings as close in age as my children as mine are they are pretty protective of one another. I’ll never forget Siennah defending her brother to a group of kids bigger than her telling them, “Don’t hurt my boy!” My heart swelled with pride.
With Savannah milestones bring a special kind of pride. We have had all kinds of predications made about her. One therapist said she did not think Savannah would not talk. Another, a doctor, posited that she would not walk until five. She can now walk and talk! Brian and I have never set any limitations on her and as she has progressed, in her own time, we have rejoiced! All the hard work is worthwhile as I’ve seen everything we have poured into helping Savannah make a difference.
What has been your favorite CSP article this far?
I really enjoy reading about all the other “Smarty Moms.” I feel like these are my companions right there in the trenches of motherhood with me. I love hearing their heart-warming stories, personal experiences, pride in their sons and daughters, savvy business ventures and conspicuous consumption tips. It’s amazing to know there are so many remarkable women here in the Charlotte area who do not just have strength (and style!)—they embody it.
What is Charlotte’s best kept secret?
We are big fans of Trader Joe’s! This may not be a ‘secret’ to many but it was for me until a few months ago. I could not believe we had lived in Charlotte for nearly four years before discovering this little treasure of a grocery chain. They offer great heat & eat food, beverages, organic produce, lots of natural hormone-free foods, fantastic mixes and guilt-free kiddie snacks—all at prices normal people can afford! They don’t carry anything (that I know of) with high fructose corn syrup and other dubious ingredients, and most stuff is pretty wholesome (not that it’s all good for you). My kids enjoy the free food samples that they have, every single day. The staff is laid back and very service-oriented. I totally dig the whole funky vibe and unique decor. If you’ve never been a Trader Joe’s, go. Go now. I wish I would have sooner!
I could not live without my…
My faith, my family, my friends and…my iPhone. I’m about as in love with my iPhone as someone can be with an inanimate object. There really is an “app” for just about everything.
Thank you so much for sharing your life with us. If you have a Smarty Mom that you would like for us to feature, please email email@example.com.
Who doesn’t love that curious little monkey? Our kids have always loved everything Curious George and have watched every episode on PBS a million times over. And now he is coming live to the Bojangles’ Coliseum for the World Premier of Curious George Live! This show runs March 12-14. Two Charlotte Smarty Pants winners will receive a family four-pack of tickets to the show. This giveaway ends March 7th at 11:00pm.