Encourage her to have a best friend. She’ll find comfort and protection.

 

“Action expresses priorities.” Mahatma Gandhi

I know. It has been 161 days since my last post. Summer has come and gone, and with it vanished the time and energy to pull posts together. Even during a season of the year in which I typically squeeze in an infinite number of pleasant and much desired rides with ‘Maggie’, I only escaped for 11 such excursions since my last post. Eleven rides in 161 days… eleven!! Consequently, the waistline now reflects the deficiency of all those summer rides I once enjoyed. It must be quite noticeable as not too long ago the magnificent wife-lady, whom I do genuinely adore, said “Wow!! You have put on some weight. Those shorts used to be so baggy on you!” Yes, my friends, this summer had certainly gotten away from me, in more ways than one.

Little Linleigh is no longer little anymore. She is continues to be as cute and ornery as ever, but physically embracing her in my arms is not as effortless as it once was. She too has put on a few pounds herself, but more astounding is how she became so tall! Her height amazes me as she sits in my ‘criss-cross-applesauce’ lap, long legs resting on the floor head nestled just under my chin. As her size has increased I too have evolved. I once could hold her like a cuddling bassinet in my arms, yet now I am forced to become more of a versatile chair.  Sorrowfully, I have dwindled from a father who could swing and toss his daughter in the air forever, to one who has need of frequent breaks and short-lived playtimes. And again, for the life of me, I cannot fathom where the time has gone between ’little’ Linleigh of this spring and ‘big kid’ Linleigh I enjoy this fall.  

Enjoying Veggie Tales Live!

Regardless of how fast time has disappeared, I reflect on Linleigh now and recognize all of the progress she has made. She has become much stronger over the summer and more deliberate with her movement. I’ve seen that she is so much smarter than I sometimes give her credit for. It is evident that the decisions we’ve made about her care, treatment and interventions have allowed her to progress more than she may have otherwise. Now more than ever the sacrifices we endure for her well-being feel overwhelmingly trivial compared to the progress she displays daily.

In the midst of an active and full summer, it is quite apparent we did something right. In light of reflecting on a lifestyle we chose to forgo and even the countless joyful miles with Maggie I had passed up, the delight in watching my daughter embark on the simplest of achievements after hours upon hours of hard work tremendously surpasses all the enchantment I could have ever found pedaling away on an open road.

Sorry Maggie. Maybe next year?

 For where your treasure is, there your heart will be also.

Luke 12:34

“There is no hope for a civilization which starts each day to the sound of an alarm clock.”

 Panic. The moment you rollover and acknowledge the time is much later than you had hoped. You grimace as at that hour, you are usually sitting behind a desk working away, not sitting on the edge of the bed wiping sleep off your face. In a world where there is too much to do in too little time with too few resources you have already started behind and given the world a sizeable head start. Panic.

 I finally got my feet on the floor and made my way into the shower. The hot water continued to wash the slumber off of me. The more I awoke, the more panicked I became. I rushed through the shower; and began to scurry to get dressed. Yet, I took a brief moment to consider my situation. “The hell with it. I am already late. Why hustle with all this anxiety and panic just to still be late and behind anyways?”

Life without alarm clocks...

 As I stepped out of the bathroom, dressed and rearing to go, there was a whisper of activity around me that I was unfamiliar with. The moon is usually still out and the roads are dark as I head out the door. Usually there is silence as the beautiful heads in my home are still lying on pillows, blissfully asleep when I leave for the day. Not this morning though. The radiant sun gleamed through the window and down the hall. As I made my way around the corner I was stopped by a long, warm embrace by the wife-lady. Not a word was spoken; arms wrapped around one another said all there was to say. I love you. I am in love with you. I appreciate you. The emotion and love shared in that lengthy embrace could never be described.

 After I made my way downstairs, I found my favorite 4-year-old cuddled alone on the couch captivated by Disney’s ‘Hercules’ streaming from the screen. In the sweetest and most loving voice I heard “Uncle C, will you watch ‘Hurk-Lees’ with me?” Hell, I was already late. I took a seat next to her and she wiggled her way into my lap. She cuddled up and together we watched her movie, intermingled with bits of conversation here and there. “You going to work?” “Yeah, sweetie.”  “Why?” “Well, Punkin, that’s just the way it is.” “But I don’t want you to go. I want you to stay and play with Linnie and me.” “I know, sweetie, I wanna stay here and play with you girls to.”

 A few minutes later I gave my lovely little niece a hug, kissed her on her head, gathered my things, and headed out the door. Upon walking down the walkway I heard a ‘tap, tap, tap’ on a window. I turned around to find Linleigh and the wife-lady standing at the upstairs bedroom window waving. The smiles on their faces and waving hands lit up my world. I must have waved back and blew kisses for at least 5 minutes… I never wanted the moment to end.

 Driving into work that morning I felt refreshed; reenergized; refueled. The early mornings and late nights, responsibilities as a husband and parent, and stresses of raising a child with additional needs had taken a toll on me. I had been running close to empty and hadn’t even realized it. The loving embrace of my supportive and beautiful wife, cuddled conversation with sweet and affectionate niece, and the gigantic smile of a cheery, waving two year old collectively filled my tank again. On I went with my day; happier than many days before.

There’s no doubt in my mind I was destined to ‘oversleep’ by an almighty God who intervened. His trustful ways are not to toss me into panic and worry, but to love me. In this world of deadlines, bills, appointments, business meetings and pursuing a means to an end, He simply intervened as any father would to say “Hey, don’t forget to stop and smell the roses.”  And you know, the world wasn’t all that far ahead of me when all was done. In fact, I may have even been ahead of the world.

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul.

Psalm 143:8

7 Realities You Ought To Understand About Fathers of Children with Additional Needs (That We Never Admit)

Inspired by Maria Lin’s ‘7 Things You Don’t Know About A Special Needs Parent’

I Am Tired  -  Not a day goes by that I neglect to acknowledge how depleted I am. Not just physically, but emotionally and cognitively as well. The responsibility of raising any child is uncompromising, yet nurturing a child who requires unlimited time and energy simply sucks the life out of you, some days considerably more than others. Maintaining therapies and exercises, while simultaneously lifting, carrying and fulfilling activities of daily living for someone is strenuous. Yet, the emotional exhaustion accrues too. The highs and lows of each day combined with the life changing ups-and-downs over weeks and months have left me fatigued. There are days I am cognitively deficient simply from the continuous assessment of varying scenarios and opportunities, and a plethora of decisions that need to be made. As the case may be, there is no end in sight.

I am Envious  -  It is uncomfortable to watch other children ½ my daughter’s age have hundreds of more abilities than she has. Understand that I am jealous you complain about the need to chase your child around the house and block the steps now that they’ve learned to walk. I am jealous you are frustrated that you have to keep picking the spoon up off the floor because your child keeps tossing it over the edge like a bomb. I am jealous you cannot finish a conversation because your child keeps interrupting you with her own words. I am jealous that you and your family can be out in public undetected by those who stare, point and whisper.

Yet, as a father, I have additional resentfulness.  I am jealous my wife has the opportunity to be home with my daughter and is directly involved in her therapies and appointments. I resent that I am gone 6:30am – 5:00pm every weekday and only receive updates on what Linleigh did, or what milestones she hit, or what the doctors said. (Don’t get me wrong, my wife’s updates are comprehensive and complete with pictures and video- She is awesome!! But it just isn’t the same as being there.) There is disappointment that I cannot be as involved as I’d love to be, and that someone else is. It’s a hard reality to come to terms with, but the truth is within me lies a sea of envy.

I Am Alone  -  Every parent of a child with additional needs feels isolated and alone. Yet, fathers are prone to being even further disconnected from friends and other fathers of children with additional needs. My wife justifiably feels alone, yet has had great conversations and gotten phenomenal support from a handful of amazing women who connect with her on a personal and profound level. Me? Not so much. I chalk it up to a classic male attribute. Men don’t divulge into deep connections that women call “feelings” and are unlikely to relate at the same capacity mothers do. We merely chat about the weather, the ball game, and latest headlines. In the same regards, it is futile to connect with a father whose child is near perfect, hence fathers of children with additional needs are isolated even more. Thus, alone I stand in the middle of an unfamiliar distant land without a soul in sight.

I Am Anxious (Much More Than I Divulge)  -  In general I am pleased and happy- enjoying this life of which I’ve been blessed. I carry on proud and poised; even perhaps appear at complete ease. Yet, deep down my soul flourishes with anxiety. I, both subconsciously and consciously, am troubled about overcoming all the added challenges that come with a child possessing a multitude of medical needs.

Clearly, I am anxious about and for my daughter. Is she growing sufficiently? Are we doing enough for her? Am I doing enough for her? Am I giving her ample opportunity to shine and impress me? Will she always continue to improve upon her abilities? When might there be another seizure? Another hospital stay? Another procedure? Another therapy?

 Not only am I consumed with concern about my daughter, I also worry about her wonderful mother, which relinquishes its own flood of worries and concerns. Is she happy? Is she coping well with her continuous frustrations with teachers, doctors, healthcare administrators, insurance companies, medical supply companies and the occasional ignorant individual? Is she getting her own time to relax and decompress? Am I doing enough to help? Am I getting in the way trying to help, or am I actually helping at all? In this roller coaster of motherhood, is she smiling her way up or screaming her way down? Without fail I am also focused on her and what I can do to make this experience a little lighter, a little softer, a little less overwhelming.

 I am nervous with the challenges of caring for a family on a limited income now that my wife has left the workforce to become full-time mommy to provide specific care for our daughter. The same expenses converge every month, regardless of the fact that our income is limited. In addition to ‘typical’ expenses, we have other expenses originally unaccounted for in caring for our daughter.

 Understand that though often times I appear relaxed and collected, deep down I worry, and am overwhelmed with an abundant array of concerns and decisions that need made.

I Am Sensitive  -  I’d like to think I am a tough guy. I can handle most things that come my way. I can ride miles and miles on end and endure tremendous discomfort all for the sake of cycling. My thick skin can handle your insults and name calling. I would even step up to a punch or two. But your insincere words can cut through me like a sword. Retard. Short Bus. “Special.” I know you usually intend no harm when you use these words, but for the sake of fathers and mothers, and respect for individuals who have additional needs, watch your mouth.

I Am Overwhelmed -  Balancing daddy ( And all its many roles: Silly/fun guy, coddler, cheerleader, physical therapist, occupational therapist, pharmacist, feeding therapist, personal hygienist…), husband, brother, uncle,  son, Christian, friend, employee , volunteer, handyman, lawn boy, mechanic, cook, housekeeper and sleep has indeed proven to be my biggest challenge. Managing all of these is like balancing a Frisbee on my fingertip- if

Somedays I do not know who is holdiong who.

one responsibility offsets, the entire disc falls. Something that very rarely works its way into my day is time for myself. I cannot find it within myself to invest in me when there are so many other responsibilities that must be taken care of. Usually the only occasion I pursue time for myself is when I feel everything else is sufficed. (Which explains why my posts are not as frequent as I would like.)

I Am Human  -  When I share that my daughter has additional needs or that she has cerebral palsy, don’t tell me you are so sorry. Sorry for what?!?  There is nothing you have done erroneously and apologies insinuate that something is wrong, something is substandard, something is mistaken. There are no errors. My experience as a parent and my daughter may be different- but neither are mistakes. Truth is, I wouldn’t have it any other way. 

Please don’t tell me “You are such a resilient and strong person- I could never manage everything you do with the heart you put into it.” Listen, I didn’t sign-up for this. I am not a saint. I am simply called to parent in a different way than most other parents. I am not a miracle worker. But I believe in the one who is.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?

But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:25, 6:33-34

Just outside Memphis, Tennessee lies Germantown High School, the scene of an inspirational story of a young man named David Andrews. Despite having down syndrome, David is a member of the freshman basketball team, by request of his mother who only asked that he be allowed to be a part of the team with his brother- to wear the team warm up suit and shoes, and sit with his teammates during games. However, as time passed, David began to practice with the team. During games, however, he was found on the bench cheering on his friends and never saw action on the court. Not very long ago, Germantown High had attained a substantial lead in a contest prompting coach Wes Crump to motion David into the game. David made his way onto the court and not only played, but left the fans in awe. David made shot after shot after shot. A young man who was graciously allowed to be part of the team ended up contributing more than anyone ever imagined. Coach Crump really sums this awesome story best- “Our team went 22 and 1, and won the county championship and that’s all great, but keeping David on my team was the best decision I’ve made all year.”

Intensive PT Program Graduate!

A little closer to home, during the month of January Linleigh participated in an intensive physical therapy program. For two hours everyday, Monday through Friday, she endured numerous exercises and activities. Some days she was more interested and engaged than others, nonetheless overall her participation was outstanding and her development over that month was phenomenal. However, what become apparent to me the most during January wasn’t all of Linleigh’s remarkable progress and accomplishments, but how I had prohibited her the right to reach her optimal potential. You see, during the month I noticed how often the therapists allowed Linleigh the opportunity to do things on her own. Each therapist prompted Linleigh to do a simple task and, imperatively, gave her ample time to respond. While Linleigh was lying on the mat therapists would hold out their arms and say, “Linleigh, can you give me your hands?” Sure enough, in her own time, Linleigh relentlessly coordinated her strength to roll her shoulders and bring her arms up to place her hands near the palms of the therapist’s. I was astounded at her responsiveness, yet also saddened by my lack of believing in her, consequently neglecting her of the chance and time to ever actively participate on her own account.

I fear that all too often we as parents, and society, do not allow others an opportunity to reveal to us what they can do and what they have within them to excel at. Regardless if a child has additional needs or not perhaps we sometimes doubt their abilities and subconsciously take it upon ourselves to manage their circumstances, overlooking all the promise encompassed within the child before us. As a result, skills and abilities remain suppressed. Talents lie undiscovered. Magnificent opportunities for an improved quality of life are bypassed. Sadly, our inability to even consider allowing opportunities for others to actively participate in their world hinders any possibility for them to attain their fullest potential 

Both David and Linleigh faultlessly illustrate the obligation of parents, grandparents, teachers, therapists, coaches and society to make conscious efforts to offer and allow opportunities for our children to astonish us. It may be as simple as asking for her hands and allowing her time to react; or as monumental as giving him a chance to shine on a court or field. Within our children is much to discover and uncover- by making way for even the smallest opportunities we may yield the most tremendous triumphs.

 

 Be wise in the way you act… make the most of every opportunity.

Colossians 4:5

Numerous times over the past 2+ decades I’ve had the ‘privilege’ of navigating my way through an exhausting market. Every 4-6 years I am forced to embark on the task of shopping for a new set of hearing aids. The time is upon me once again. (Lucky me! Ugh!)

This time, however, I am presented with a new daunting decision. In-the-canal aids or behind-the-ear aids? (AKA: Hidden aids vs. blatantly obvious aids on my damn near bald head.) After much investigation and speaking (Though they may prefer to call it interrogation) with numerous audiology and speech professionals I have been convinced that a behind-the-ear model is certainly the way to go. (Durability, service ability, longevity, technology, etc.) Yet, as someone who has worn ‘hidden’ aids nearly all my life, jumping to the ‘obvious’ model is uncharted and perhaps uncomfortable territory. Why uncomfortable? Because my hearing disability, which has been relatively hidden over the years, will be easily apparent to anyone and everyone. Without a doubt, people will notice the abnormal assistance my life requires. I may be forced to experience stigmas and judgments, and perhaps society’s & individuals’ subconscious discrimination, which has been tremendously minimized before- thanks to the ‘hidden’ aids.

As a man who is more than comfortable with his disability, this doesn’t bother me all that much. The judgments society may make of me and the challenges I could endure are manageable. However, as a father, the manner in which society and individuals view and value people with disabilities, I am overwhelmingly saddened, and disheartened.

M. Wada, a father with a daughter with CP, validated this disastrous certainty with his own experience:

“At times when I’m pushing Rachel’s wheelchair, I see the looks in people’s eyes, as though I have ET in the chair. I have seen people at their best, and at their worst. We have a long way to go in this country to look beyond what we see on the surface… take anyone you know, put him or her in a wheelchair, and that person will instantly be viewed by many in this world as less competent, less intelligent…. That needs to change.” 

In a world that focuses immensely on the surface, on the deceptive visual appearance of one another, we do everyone a disservice. We are not fair-minded or unbiased with one another, but judge by what is on the outside, disregarding and neglecting where the most of any person lies, the inside. The real value of any person is their heart- not what they look like, but who they are.

Linleigh is full of ornery personality; unconditional love; and a joy I am overwhelmingly envious of. Yet, by the mere ‘Vulture Culture’ our society operates under, a majority of individuals will only see a cute little girl confined to a wheelchair while they stare as I merrily push her along on our way. They will never see, or even seek to see, who she really is.

This unwarranted judgment of children (Or adults) with disabilities needs to change. I encourage you to always bear in mind one simple point: Labels Lie. The identifying markers we give one another are unacceptable, unfounded, unauthentic, and absolutely inaccurate. “Disabled” “Retarded” “A Vegetable” “Mute” “Blind” “Hearing Impaired” “Ignorant” These are all labels used to describe an array of amazing individuals who have additional needs. But they lie- they are not what makes a person.  As parents, family members, friends, and a society it is imperative that we look through any disability and see all the beauty, joy, and personality within children with disabilities. For it really is not what we look at that matters, but what we see.

Do not judge, or you too will be judged. For in the same way you judge others, you willbe judged, and with the measure you use, it will be measured to you.

Matthew 7:1-2

 

Stop judging by mere appearances, but instead judge correctly.

John 7:24

Indulge her with fairytales and books. Never cease to relish in the favorites, yet surprise her with a gleaming new storybook every so often.

 

Do your best to attend as many therapy sessions as you can… she loves any opportunity to show-off for daddy.

Be conscientious to recognize her best means of communication and embrace splendid ‘conversation’ with a good laugh over a decent cup of coffee. (Apple juice will work too.)

Refuse to let limitations impede on her God-given delights as a little girl; send her on the all-girls weekend getaway to the beach.