“Life is not about waiting for the storm to pass, it is about learning to dance in the rain” - (Photo Credit: Sara Waterman Arizona)
Ever year the month of February brings the Phoenix Open to Scottsdale, crazy amounts of traffic and tourists, the Superbowl, and for our family — a trip to Birmingham Alabama! Be honest, did you break into song with the legendary Lynard Skynyrd when you heard the lyrics above - “sweet home Alabama … where the skies are so blue”? I have to admit everytime I hear the song I cannot help but belt it out, it’s such a feel good beat! However, if music is not your thing, perhaps you prefer romance and turn to mush over the handsome Josh Lucas and his enticingly sexy blue eyes, understanding without question why Reese Witherspoon falls for him all over again in the movie! I mean who doesn’t want a man that loves his dog, flies a plane and can create hand blown glass kitchen items and decor, while becoming successful on his own! If you have no idea what I am talking about, I may question our friendship - and if you don’t know who Josh Lucas is, we really need to plan some quality low key girl time - also known as movie night. I’ll provide the comfy couches, blankets and place to relax - you bring the popcorn, wine and an open mind to one of my favorite chick flicks of all time! My list of favorite movies is a blog post in itself for a later day — Wimbledon, Pretty Woman, The Lucky One, How to Lose a Guy in Ten Days, I could go on — but I am way off subject now — so enough about that and back to Alabama!
When I first booked our airline tickets to Birmingham three years ago, I completely related to a line in the movie Sweet Home Alabama where Reese Witherspoon tells her fashion forward, successful friends in NYC that she cannot meet them because she's in "Alabama" — said with a sarcastic, dry, disgusted tone. I had no idea what to expect from Alabama back then, yet I have grown to love - and I mean LOVE - Birmingham and the south in general! The people seem more polite, the pace is a little slower, and I appreciate the ladies in their southern accents who greet Lincoln with “hey handsome” when he arrives at the therapy office. Not to mention they remember me which is meaningful because as mamas (parents in general) we are often forgotten in the chaos involving our children! I have been blessed to work with the same property management company for three years for living arrangements, and the process has been easy and smooth. This year they changed their lease terms to 30 days, but as a returning customer they allowed me to stay for the two weeks I need instead of having to start over in my search! I am also grateful Lifetime fitness has a gym down the road that our home membership transfers to for free — allowing me to at least try to stay sane and on track while traveling, and Lincoln a place to play with other kids!
Why Alabama? If you have not followed our story before, you may be wondering why we go to Alabama. When I first started researching above and beyond therapies for Lincoln outside of our normal occupational and physical therapy in Phoenix, I was exploring well known medical facilites like Duke, John Hopkins, the Cleveland Clinic and so on. Never in my wildest dreams did I imagine Alabama would be in the mix. However, the Childrens of Alabama Hospital appeared over and over in my search for exceptional therapy! The program they offer is nationally recognized for their research and success with CIMT, and is hands down an experience I would recommend to any family searching for specialized care. The entire process has been pain free from the first year ‘til now. For many reasons, Alabama holds a special place in my heart. I think back to year one - still learning as a mother in regards to everything - including therapy, traveling solo, preparing myself for three weeks of being alone with Lincoln, no outlet for “me” time and a toddler whose strong arm/hand was being placed in a cast. Those three weeks brought sleepless nights, tears, exhaustion, and a gratitude I cannot explain. Yet we survived! I returned for year two, and now in a few days we are headed back for year three. I am also proud to say we have evolved from merely surviving to thriving - living every moment of life to the fullest! Which in Lincoln terms means cake pops from Starbucks, superhero hide and seek, board games and anything in between preschool and therapy appointments. When we travel, we make a point of venturing to new places and trying new things!
What is CIMT? For those who are not familiar with this term, CIMT stands for Constraint Induced Movement Therapy. A number of treatments are given over a two to three week period, that encourage the brain to "rewire" itself following a major injury, such as a stroke or head injury. The research completed by Edward Taub, PHD and the University of Alabama at Birmingham showed that patients can "learn" to improve the ability to move the weaker parts of their bodies. Allowing them to use both sides of the weaker extremity and not to completely rely on the stronger extremity. In simple terms, our goal is for Lincoln to use both hands/arms more equally to make everyday tasks easier for him. After spending three full weeks in Birmingham year one, two weeks year two, and returning for year three - we feel that positive improvements were made, and the therapy is worth attending! I want to be brutally honest with readers that the therapy is intense and this is a building block for continued at home therapy. Three hours straight everyday for two weeks, including multiple hours of homework each night is a lot for a five year old (or child of any age). Lincoln is truly a superhero in my eyes! Sure I am his mama, but I have been by his side from the beginning. I have seen him defy odds doctors said he wouldn’t, and next year I will probably be sobbing as he attends kindergarten with children his own age that never experienced the deficits he had to overcome - thank God they are all special in their own unique way, and I hope they are all kind to each other! Every year I am amazed at the resilence of my little man to adapt and thrive during change. In the next two weeks, if you think of us, I ask that you pray for success regarding his treatment and our strength in being away from home. Please feel free to send us a message or text us a note of encouragement too! No matter how many times we have been away from home, I still enjoy an adult conversation from time to time. As any mama would, I do my best to make things fun, and the days seem as routine as possible. Yet, reality is it’s therapy all day, in an uncomfortable hard cast, not able to use his dominant hand, living in an apartment in a completely different state, away from dad, preschool, and life as he knows it. This is a lot to ask of a child and I thank God everyday Lincoln handles it so well — that we are able to share our story, bring hope to other families and take part in advanced medical programs! For more information click the link below.
https://www.childrensal.org/constraint-induced-movement-therapy
How Does It Work? Lincoln will work with an occupational therapist for 3-4 hours per day x 2 weeks. His stronger arm (left) will be completely restrained using a cast extending from the upper shoulder down past the fingertips. The weaker arm/hand (right) is then trained using play situations appropriate to the child's stage of development. We specifically work on fine motor for Lincoln as that is the hardest movement for his brain, along with gross motor movements. This will be our third year in Alabama, and fourth year of constraint therapy (at age one we went to Minnesota). We are very sad that Miss Jackie our therapist the past two years is gone, but are excited to work with Miss Anna! The entire staff is incredible, we just hold a special place in our hearts for those we spend more time with.
Why Put Him Through It? When I was pregnant, I never dreamt of being a therapy mom. Let’s be real I doubt I even knew what true therapy was! I had a birth plan afterall — meaning everything would be exactly as I wanted and end with a baby in my arms — insert serious laughter here because let me tell you, the minute I walked into the hospital the words birth plan were never even mentioned and I fortunately ended up with a baby in the NICU. I say fortunately because I believe God placed a specific doctor in our path that had experience with my situation, as well as a NICU nurse filling in at the small hospital I ended up at because they were short staffed, who also noted signs of failure in our son. Now out of respect for other mamas, kudos to you if your birth plan was upheld! In fact a small piece of me is jealous, after all I took the time to write it, and truly believed in what I wanted. I am grateful for other mamas who can relate to my struggle though, because in the beginning I need their grace to understand my own emotions. Yet, I pray for mamas I care about and love that their pregnancies and deliveries have no hiccups. The possibility of complications is something I had considered briefly, and even prepped my husband for, however it was mostly a notion of something that would “never happen to me”. If you have read our story you know my pregnancy was healthy, but it ended in an emergency c-section for reasons doctors could not explain. Yet our story is the reason I advocate! I want other people to know that life happens, plans fail, and through the fear, chaos, grief and growing pains - you will be more than ok! Yes, some days I want to cancel all of our therapy appointments because everyone gets tired of them at some point. So I do! With advanced notice and respect to the lovely ladies we work with of course — we take breaks to travel especially in the summer. We take days off when school has a fun party (insert other reasons here), and then when we go back Lincoln works hard and has fun! I used to feel guilty for missing appointments, but over the years I have learned to give myself grace. As parents it is our job to be selfless and to put the needs of our children first, but sometimes they need a break! With that said I am a HUGE advocate of therapy, especially at a young age. Studies show that the more you train the brain while the child is young, the better they do later in life. Neuroplasticity, also known as brain plasticity, is an amazing thing! Over the past four years my husband and I have witnessed positive change and for now Lincoln does not fight us, minus the minimal whining if he is tired. If occupational and physical therapy will help him stay healthy and strong in the years to come, then it is a no brainer for me to make this a priority!
How Have I Changed From CIMT Over The Years? I am a stronger person in so many ways and I am Lincoln's biggest advocate! The first year, people constantly asked me how he broke his arm (because he is casted for treatment) and the looks I received while they asked often made me feel like an awful mother, even though I knew I wasn't. I wanted to explain the reasoning, yet strangers don’t ask why or even care. Feeling overwhelmed already, I truly did not know how to handle the judgment, and I know I shed countless tears the first two years, for many reasons. We have all been judged in life, but when it involves your child, it is a completely different feeling. Mama bear comes roaring out of you and everyone better watch out! By our third and upcoming fourth round of therapy though, everything feels different. I no longer care if people judge me as a mama, and I am 100% open about his cast if someone hints towards it, I explain how amazing the program is and I tell Lincoln he is a super hero! Most importantly I am excited for us, and the experience we are so graciously allowed to be a part of. Every year we meet new families. If God can use me even briefly to encourage them, my mission is complete. As a family we have learned how to navigate the system and Lincoln truly enjoys our travel to Alabama. The reason I share with others, is many do not understand pediatric strokes occur or the many avenues of intervention available to help their child. There is a wide range of things that can be utilized including (but not limited to): bracing, finding the right shoes, occupational, physical and speech therapy, CIMT, stem cells, oxygen chambers and so much more! Insurance alone is overwhelming. I believe the world needs more optimism and awareness on many issues and I happen to be passionate about this one! Have a question?? Please feel free to message me! Have insight? Again, please feel free to share with me! I also encourage you to find an incredible circle of support through friends and family. Lincoln has more cheerleaders than he can count and the love in his life is endless.
I have a bucket list of places I want to visit in the south, including Savannah, Charleston, Hilton Head and so many other incredible cities I probably don’t even know exist! While these are on my radar, Lincoln and I have been blessed each year to adventure out and spend one weekend in another state while we attend Constraint Induced Movement Therapy. Year one - we toured Chattanooga, TN. We walked the downtown, ate too much good food, enjoyed a boat ride on the river and visited the aquarium, stood in line for an hour at the “must have” icecream place, and most importantly spent quality time together, outdoors in the beautiful weather! Year two - we met Jason (dad/husband) in Orlando, FL and surprised Lincoln with Disneyworld! It was a hot, whirlwind of a weekend, full of sunshine and fun. We are definitely Disney fans! This year we are so excited to visit Atlanta, GA! While I cannot wait to see the well known aquarium and other sites, I am more excited to spend the entire weekend with a dear friend and her son. We arrive Friday afternoon and plan to soak up every minute from Friday night to Sunday when we depart! Stay tuned for a follow up post on Atlanta and what we enjoyed, as well as follow up on Lincolns progress. Thank you for being a part of our journey!