5 Tips for running the Special Needs “Marathon”

“…And let us run with perseverance the race marked out for us, fixing our eyes on Jesus…” Hebrew 12:1b-2a

 

I recently became a runner.  At age 48 I decided, having never run farther than about a half-block, to sign up for a marathon.   It started with an 8-week pre-training training, followed by actual marathon training.  Coincidentally, we celebrated the 16th birthday of my son, who has  a rare genetic disorder, on my first day of “real” training.  I have learned so much about myself, both physically and mentally, through this training process. As I gradaute to longer run I realize that parenting a child with special needs is just like a marathon.  More importantly, I now understand that just as I train  and prepare to run, us special needs parents need to prepare for our marathon.

Here, my top 5 tips for success in the special-mom-marathon:

Get a group. I just happened signed up for the Marathon with a team. Team World Vision sent me the training schedule, added me to several Facebook Groups, organized weekly group runs, and supported me every step of the way.  I made lots of new friends who were in the training with me, and also some new friends who would be running their 7th or 8th Marathon.  I can truthfully say that without that high level of support and accountability there is no way I would have stuck through the bad days.  An epidemic in the special needs parenting community is isolation.  You can survive like that for a little while, but if you’re marathon-ing this thing, you just won’t make it without a solid support group.  Groups encourage each other, offer assistance and support.  A group can be two people, or twenty or two hundred.  You need a group.

Fuel. Did you know that marathon runners carry fuel (food) with them on the race course?  They acknowledge that their body is going to use all of it’s resources along the run and will need to re-fuel before they finish. They also have extremely specific meals they eat or avoid the night prior to a long run.  Nutrition is probably the most underestimated key to marathon parenting.  When typical kids are in that stage where mom has to chauffer them everywhere and keep a close eye, momma can to survive on fast-food drive thru and candy bars at the check-out line. That’s ok, eventually momma will get back to the gym and grilled chicken as her kids become self-sufficient. Marathoners need to be running strong after mile 20. My special guy is 16, and I still have days where drive-thru or NO food seem to be my only options. But I need my heart, lungs, muscles and bones to last alot longer than most and that means I have to be much more careful of how I fuel.  Nutrition for you is as important as it is for your child.  Physical and mental health must be well-fueled.  

Rest. Marathon runners know that sleep is the key to their body’s performance the next day.  They listen to their body, so the night before and after a 18 mile run you will most likely find them in bed at 9pm.  Parents of newborns can make it through those weeks and months of no sleep because eventually their baby IS going to make it through the night.  I know special needs parents who haven’t slept through the night in 12 years.  Get some sleep.  You must allow your body and mind to rest, in order to perform at the level your child needs.  Do whatever it takes to get some sleep every so often.

 

It’s all in your mind.  I think the one thing about running longer distances that took me by surprise was how mentally challenging it was.  I assumed that the struggle would be physical.  My legs get too sore to move, so I stop running before I cross the finish line.  That never happened.  What happens frequently on longer runs is that my mind says: “this is too far/hot/long/awful, let’s stop running now”.  My legs can keep going, my heart and lungs are still pumping, but my mind is trying to shut it down.  Without minimizing the severity of your situation, can I suggest to you that perhaps your biggest struggle is in your mind?  Training my mind to not throw pity parties or be angry about my son’s condition took a while.  But eventually I succeeded in shifting my perspective and realized (as sadly cliche as this is about to sound) “it could be so much worse”.  If I shut down negative thoughts and welcome a new grace every morning to get through that day, I’ll make it.  Don’t let your mind be your enemy.

Embrace the marathon.  For the first few weeks of marathon training I woke up every Saturday morning thinking  “oh my gosh I can’t possibly do X miles today”.  And then every Saturday when the long run was complete and I was still alive, I felt the most overwhelming sensation of joy.  Maybe a runner’s high? I just know that eventually my Saturday morning mentality shifted so that I woke up anticipating that joy at the end of the day’s big run.  I began to embrace the fact that I was going to eventually get to 26 miles, rather than fear it.  My first years as a special parents were no different.  I woke up worried each morning, and approached each milestone missed, or specialist update with trepidation.  But eventually I began to recognize the profound joy within the journey.  I was able to see that I experienced depths of emotion, faith and love that most typical parents won’t ever know. I now embrace this role and cherish this special blessing that I’ve been gifted.  I look forward to every step of the way as a new treasure that will surely unfold before me as I embrace this marathon.  

running-shoe-photo

Special Priviledge

I would like to confess to you a recent realization: I am the product of Special Needs Privilege.  You’ve heard all kinds of privileges being thrown around as accusations lately, but this one is probably not at the top of the list.  However, I’m now fully aware that such a thing exists, and I’m one of its victims.   Continue reading

Special Needs Mom Life: Refreshing Waterfalls or Devastating Flood?

Psalms 42:7 Deep calls unto deep at the noise of Your waterfalls; All Your waves and billows have gone over me.

I’m a little old school, so I’ve been hesitant to go all-in with Facebook and other social media “relationships”.  I define friends as people who I’ve met in person, and over time developed lots in common with via shared experiences. But it’s 2016. I am currently collaborating on a book with a woman I’ve never met! It’s a new and curious experience to encounter people online whose passions, experiences and mission align so strongly with my own.  I’m not sure of where she lives, no clue of her favorite food or TV show.  But nonetheless, I now count her, and several other FB strangers, among my friends.  

I recently submitted our diagnosis story for the new book she is writing, and she edited the heck out of it – LOL! Truly she’s a fantastic editor, I’d love to send her everything I write, but I feel that would wear the friendship thin pretty quickly.  Within her editing, however, she highlighted one sentence and commented: “I absolutely love this sentence!!!! Wow. Such a powerful thought, and worthy of a blog post all on its own.” Continue reading

Running or Just Running Around?

“I run in the path of your commands, for you have broadened my understanding” Psalm 119:32 NIV

if there’s a one word description of my daily/weekly life, it’s running. Now before you get the wrong impression, let me make clear I am NOT a “runner”. I don’t lace up running shoes and head out with my headphones and bouncy ponytail – I see those women all over town and admire/envy them – they’re adorable. I’m talking about running around. Racing from one thought to the next, multi -tasking at light speed between multiple coinciding responsibilities, and our car keeping these winter roads hot between therapy appointments, story time, group activities, meetings, etc.  Most moms I know are this kind of runner. Special needs moms just replace the usual running to soccer practice or ballet with doctors, therapies, medications, behavior crisis, etc. Continue reading

It’s Time to get over your Perfectionism

“Martha, Martha,” the Lord answered, “You are worried and upset about many things, but few things are needed – or indeed only one.  Mary has chosen what is better, and it will not be taken away from her.”Luke 10:41-42

pickle jar

 

The jar of pickles in this picture reminded me of the most important lesson that this perfectionist-natured person has ever learned.  Perfect is over-rated.  Not only is perfect over-rated, but I’ve truly learned that when life is perfect, you miss out on all the best stuff. Continue reading

Here’s Not Here

If I admit something to you that you may find shocking, or at least slightly inappropriate, do you promise to still be my friend? Here it is: I love “The Walking Dead” tv show! My guys got me into it during the first season and I’m hooked.  OK, you promised, so now you have to keep reading.  This blog isn’t about zombies or guilty pleasures. But the title, “Here’s Not Here” is a quote by one of the main characters this season.  It’s how he deals with the reality around him of a post-apocalyptic world.

My latest revelation in the special mom journey, is realizing that – for all those early years, the struggle-to-comprehend years, the more-questions-than-answers years – Here’s not Here.  Let me explain, with the help of my (least) favorite prophet, Jeremiah. Continue reading

5 Things Pre-Natal Testing Wont Tell You 

Not for the first time, I find myself comforting a pregnant momma whose doctors have diagnosed a problem with her unborn child. Prenatal tests and needles have determined her child to be imperfect – medical opinion agrees that termination would be in the family’s best interest. I’ve experienced these conversations before: the doctor provides all of the medical and cognitive complications that very likely will be present at birth. The uphill battle that will ensue for the child to survive, and the imperfections that will remain. I have no issue with doctors presenting the facts for parents to make an informed decision. Families make these impossible decisions every day. My only issue is that doctors cannot inform any parent completely. Their prognosis has no way to include extremely important facts that parents should know. Continue reading

The OTHER Special One

My heart today is overflowing with gratitude for God’s gift to me of the most special boy. I can’t even describe to you the stark difference between who I was before he came into my life, and who I am now.  The world would call him my “typical” son.  Oh – that is so mistaken! Continue reading

Dear Diagnosis: You’re Fired!

Dear “Chromosome 8p duplication & deletion”:

This letter is to inform you that we have decided to let you go.  We are aware that when the geneticist originally assigned you to our family, by strapping you around our second child at only 6 months of age, she indicated that you would be with us for life.  However, we’ve decided to go in another direction. Continue reading

Be Un-Special

This will be a really busy week for me.  Not stressful or hectic, but definitely busy.   As I reflect over all the things I’m currently doing, planning, preparing or arranging, it reminds me how Un-Special I’m being. And that makes me really happy!

Sometimes being a special needs mom can become more than just a hat that I wear, but a label that is branded on my heart.  In the past, that label has caused me to feel like an alien walking on a planet of unfamiliar creatures.  Because my situation is unique, and one that most other people around me can’t even imagine, I am prone to believe I am completely unlike anyone else.  That can be dangerous. Continue reading

I’m not Normal (thank God!)

This morning I poured my coffee and sat down to check emails and the first thing I saw in my inbox was a message with the subject line: “Who do You Say You Are?”  It was ironic because I had just come up with today’s blog title in the middle of the night and I’m sure this isn’t the answer they were looking for! But that’s ok, because today I’m talking about NOT being normal, NOT fitting in, and why that is GOOD. Continue reading

Special is Special

My heart aches for others to know that special is special, in it’s most pure and true form.

Special is SpecialOne result of my journey has been a redefinition of the word Special. It reminds me of a passage from Paul’s Letter to Titus, which says that to the pure, all things are pure.  The word Special, in the most pure form, means something extraordinary and to be highly valued.  The rest of the verse says “…but to those who are defiled and unbelieving, nothing is pure.  Both their mind and conscience are defiled.”  I can admit that the meaning of special had been tainted in my own mind.  Since I was young I knew that special, as referring to individuals who were different, really meant “less than”.  Not something highly valued nor extraordinary, but something oddball and abnormal.  My own thoughts had been defiled and were working against me to shut out the truth of God and replace it with the perspective of society.  I was unbelieving and therefore my mind and conscience were unavailable to received truth and purity.  I realize now that Nicolas is  special. Very special.  He is a unique, extraordinary gift. Continue reading

Letting Change Take Over

Best Friends

Best Friends

It is amazing how laying down your own perspective of things opens up a whole new world that you didn’t know you were missing.  When I finally stopped hyper-focusing on my immediate problem, I was able to see so much more.  Romans 8:8 took on new meaning for me: “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” I finally saw what it was really saying.  Not, “God will make everything good/ok/all better” but “God works everything out for my good.” So then, in everything, God is bettering me and bettering my situation. That is a huge paradigm shift. He is making me better, making my family better, my marriage better, my friends, community, etc. Not necessarily by answering every prayer or fixing every problem I face. That verse says that within the problems, I am being bettered. Continue reading

Change Your Mind

I began my “special” journey really mad at God.  Subsequently I stumbled upon the concept the God’s perspective was wholly different from human perspective.  The concept that what I see isn’t at all what God sees.  He is all-knowing of past, present and future while I am befuddle in all three of those.  Learning and understanding a concept, however, is not the same as putting it into practice.  That’s what I mean by surrender – actually letting that concept guide my thoughts and actions requires a challenge to every natural instinct I have.   Continue reading

Perspective is everything

Nicolas enjoying some sand

Nicolas enjoying some sand

Soon after receiving a devastating prognosis for my baby, I was introduced to a concept that eventually changed everything – my whole life, not just the specific circumstance I was facing with my son.  I ran across this concept in a much bigger story than mine, in the book of Exodus.

This story begins in Exodus 3 where we find Moses walking through the desert. Here’s my super-condensed recap of what preceded this walk in the desert. He has run away from the luxurious life he had known since childhood.  As an infant he was marked to be killed but then miraculously spared by a princess and raised as royalty.  Then, as an adult he is pulled emotionally back to his roots, perceiving for the first time the cruelty being imposed upon his people and he chooses to flee to the desert. There, I would imagine, his plan is to live out the remainder of his life in anonymity and tranquility.  So while contentedly walking his sheep through the afternoon sun, he sees in the distance a burning bush.  As he walks toward the bush to get a closer look, God’s voice audibly calls him by name “Moses!” and when Moses replies “Here am I” the voice says:

“Do not come any closer. Take off your sandals, for the place where you are standing is holy ground.”  Exodus 3:5 Continue reading