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Endurance

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This photo is from the Ironman Arizona website; this is the highway I travel almost every day.

Ironman Arizona happened close to where we live this past Sunday.  They closed one direction of the highway for the bike portion of the race. As we were coming home from church and lunch on Sunday, we drove for 13 miles beside the bikers.  Some were going north at a slight incline and then others were already on their way south.  I was driving so I couldn’t watch them as much as I would have liked but as I observed them my mind kept going to the question “what is their story and what has led them to compete in the Ironman?” After returning to the RV, I googled the route and discover what all is involved in the Ironman. It starts with a 3.8 km (2.36 miles) swim; 180 km (111.85 miles) bike ride and then 42.2 (26.2 miles) run.  There were approximately 2500 athletes that competed.

I have not been able to get the images of these bikers out of my mind the last few days and the word endurance has been surfacing when it comes to mind.  The definition of endurance – the ability to withstand hardship or adversity; the ability to sustain a prolonged stressful effort or activity. Or another definition – the act or an instance of enduring or suffering.

When I read the definition, it sounds HARD and LONG…. Why would anyone do this willingly to their body?  They signed up to do this, they paid an entrance fee to do this, they knew when they arrived at the starting line what was ahead of them, but still they showed up. 

I’m not an athlete… and my physical status has never been “in shape”.  I have participated in several 5k run and walks over the years and I have had times when I exercised regularly and pushed myself beyond what I thought I could do but I have never trained or have any “athletic mentality” so I just can’t relate to doing something like this. 

But… I feel such a connection to this race… such a pull to the words HARD and LONG, it feels like my life.  The part that I’m wrestling with is:  I didn’t agree to this; I didn’t sign up for this; I wasn’t prepared on that cold January morning in 1998 when a nurse told me that Bryson had suffered a seizure in the nursery during the night.  I wasn’t aware of what was ahead of me, I had NO choice but to show up and become the best mother to my first-born son.

Endurance… is that what this is, sitting in an RV in the middle of the desert 1500 miles from home…looking for a family for him to live with?  Is this what the ability to withstand hardship…. the ability to sustain a prolonged stressful effort? Is this what 24 years, 10 months of caring for Bryson has been.  It has been hard, and it has been long, the word endurance seems so negative…

As I reflect on the athletes that signed up for the Ironman, I believe that even though they knew about the hardship that they would be facing for the next 7-12 hours…. that when they finished exhausted at the finish line…. they will probably do it again. I didn’t know what was ahead of me back in 1998 and I’m tired in so many ways from this race, I’m tired of the caregiving that it takes with all of his physical and medical needs, I’m tired of fighting and worrying about his future. But I would do it all over again if I had to… Bryson has shown me beauty in a new way, his courage, strength and acceptance of his disabilities…. his positive view to life… there has been many wonderful memories over the years and I love my son with my whole being… all his quirks, thoughts and passions. When I release my caregiving role to someone else… I will embrace the privilege it is to just be Bryson’s mother!

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 NIV

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us. Hebrews 12:1 NIV

I can do all this through him who gives me strength. Philippians 4:13

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4 NIV

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope. Romans 5:3–4

Special Needs

On the SIDELINES with GRIEF

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It is almost midnight and I can’t sleep, my mind has been racing with lots of thoughts about my emotions this week. The more I laid in bed the sadder I became and the more grief I felt…… Yes, I ate deep fried fair food tonight and feel horrible physically but I know my inward grief isn’t from that, this is what my grief is from:

1. It is Tuesday night and I haven’t heard from Jamaica which means my August Miracle of Stevan coming home soon is pretty well over.

2. Monday, I carried a bright orange paper to the fair which declared Disability Awareness day at the fair…. A bright reminder that my son qualifies for that….. He participated in the 5 skill events, most which were way below his level…. But he did them….. We cheered… He won the basketball shooting skill… made it into an article in the newspaper about “special Needs” day…. How much louder can the TRUTH BE???

3. My three boys participated Monday afternoon in the 3 point barn ball competition. Bryson playing with the “normal” boys. Got lots of cheers!! He and Ty both sank 5 out of 10 baskets in their age group and participated in a shoot out with 4 other boys. I cheered against the others, Bryson missed his shot…. Can’t win there……

4. Sat by myself in the grandstands to watch harness racing today, good thing I was wearing sunglasses so no one saw my eyes. I didn’t expect the emotion it stirred up. The missing of my daddy. The remembering of sitting with him at the fair. Feeling jealous hearing about other families sitting together enjoying each other; a father and grandfather present.

5. Took Bryson to Special Olympics softball practice tonight; he got to pitch… JUST WHAT HE ALWAYS WANTED TO DO, he pitched with accuracy and strength. As a mom on the sidelines I studied him as he tucked his mitt under his right arm, pitched the ball and then hurried and put his hand into his mitt, caught the ball returned from the catcher, put the mitt under his right arm again pulled the ball out and did it again. He did it for almost 1 ½ hours…… He was HAPPY…. During his batting practice, he went through the motions of swinging his bat just like the big leaguers do, he hit the ball well….. but the ball just went into the outfield because the others on the team had lost interest a long time ago. As we walked out… I felt it, He got to do what he wanted but he knew nobody else really cares about this like he does… NO ONE WAS CHEERING FOR HIM… TO HIM THIS IS HIS TALENT…. Does anybody care? He never complains but I felt it in the silence from HIM… it hurts!

6. Ty and Kaden both have gone to the fair with friends; Bryson has asked me about him going with his friends… I skirt the subject I tell him how much fun he will have with his “PAID FRIEND” (respite worker) on Thursday when he goes with him. YEP…. I have to pay someone to take Bryson to the fair……. I have been thinking about this a lot in the last hour… I think the word friend has become so watered down… what is a friend? BRYSON IS EVERYONE’S FRIEND AND EVERYONE LIKES BRYSON… kind of like FACEBOOK…. We LIKE our friend’s posts but do we really CARE ABOUT THEM AS A PERSON???? In the olden days FRIENDS hang out together, talk, laugh CARE…. As Bryson has gotten older, his world has gotten smaller….. NO ONE CALLS, TEXTS, INVITES HIM TO PARTIES, HANGS WITH HIM…… (yes there have been a few bright spots) BUT….in the realm of a 16 year olds life……….

7. 16 years old should mean freedom, pictures and posts of driver’s licenses popping up all over his FACEBOOK account… “mom when can I drive?” CONSTANT REMINDERS that he is on the sidelines and SO AM I.

So here I am after midnight now and I have dumped my feelings onto paper…. Do I feel better? NO… IT REALLY HURTS…. I haven’t even talked about FOOTBALL…. He loves football but he is on the sidelines there too…… He loves to be a manager…. BUT HE KNOWS… HE KNOWS he will never play the game… Have any of you ever seen how ACCURATE AND GOOD HE CAN THROW? NOPE….. all the things that Bryson does well are performed in our front yard, barns at the fair or ball diamonds in Elkhart where NO ONE SEES… because he can’t be ON THE FIELD…. HE WILL be on the sidelines or OFF in the “NOT REAL” SPORTS WORLD.

I haven’t even talked about TYPE 1 DIABETES…. THERE IS NO CURE… this isn’t the DIABETES THE WORLD TALKS ABOUT “just more exercise and eat healthy” THIS IS A LIFE SENTENCE. This disease has made him more on the sidelines for independence then his mental and physically disabilities in lots of ways……..

This momma heart is deep in grief for one son….. HE HAS SUCH BIG DREAMS… A HUGE HEART…. But deep down I know HE HATES BEING ON THE SIDELINES….. ANOTHER son far far away that I have spent 1 hour with in his 12 years of life… BIRTH CERTIFICATE SAYS “Father Unknown, mother unknown” who continues to live behind concrete walls and barb wire for a few more months, deep down I know HE HATES BEING ON THE SIDELINES TOO…. He needs his family.

My last blog was about God’s timing and I don’t understand it; tonight I don’t understand God’s playing rules either….. there are all sorts of BIBLE VERSES that can be quoted and DEEP DOWN I know truth…. Right now if the house was not dark and everyone else was sleeping… I THINK I WOULD LET OUT A LOUD ROAR OF PAIN……. BUT INSTEAD I will crawl back into bed and cry and watch my son’s life on the sidelines again tomorrow and pray the pain will go away.

Encouragement, Family, Health, Special Needs

Letting go bit by bit….

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Letting-go21It was June 2010; 2 years after Bryson had received the life changing diagnosis of Juvenile Diabetes.  Along with the other special needs that Bryson had, Brad and I still wanted Bryson to experience summer camp.  We found out about a Diabetes Camp for children held in North Webster and we decided this would be a great opportunity for Bryson to be around other kids with Diabetes.  Bryson wasn’t truly excited about going but he agreed and plans were made for him to attend.  To be really honest, I was looking forward to a break from 24/7 care of Bryson and his Diabetes.  I had booked a flight to Alberta, Canada to spend time with my sister-in-laws while Bryson was at camp.

The Sunday afternoon arrived for us to deliver Bryson to camp and I started seeing fear in Bryson’s eyes as we were finalizing packing his stuff.  He became angry and decided he was not going to camp.  The next 2 hours were some of the most difficult with Bryson.  During this stage of Bryson’s development he didn’t have control of his anger or behaviors and when he got angry you didn’t know when the kick might come or the push or hit.  Brad and I tried to reason with him that it would be a great experience for him.  I read the fear in his eyes and my mommy heart started to break, was this really what I should be doing to my son?  Finally after about 2 hours and we were pushing the deadline for check in at the camp, Bryson finally calmed down and reluctantly got in the car and we made the 45 minute drive to camp.

Checking in and meeting his counselor went smoothly and Bryson seemed to have gotten to a reserved state of mind and was obedient and corporative in looking around the camp.  We pulled the counselor aside and told him what had transpired at home and he said he would help with the transition and everything would be ok.  We started walking out of the cabin and to meet up with the other campers in Bryson’s cabin and all of a sudden Bryson realized we were going to leave.  I saw the wall build and I knew what was coming.  The counselor immediately distracted Bryson and offered to go play basketball with him.  I looked at Bryson and I told him, “you go play basketball for a while and we will be here.”  Bryson reluctantly walked away and started to play.  What we did next, as I type this still breaks my heart.  We walked away and left him; with no goodbyes… we just left.  The counselor knew what we were going to do and kept Bryson from turning to see us.  WE LEFT HIM…

I cried the entire way home and sat in his room for the next several hours after returning home. My heart was wrenched with loneliness and thoughts of what have I done to my son?  Will this scar him? Will he hate us for leaving?  Will he be ok?  Do they know how to take care of him?  I have only cried such a deep heart cry like this several times in my life.  Words can’t describe the heartbreak that I felt.  But most of all, my baby that I was caregiver for was gone for a week, I had wanted this break but at that moment I realized how much my life was all about him and his care.

The camp called us that day and told us that he was fine and had adjusted well.  I flew out the next morning for my vacation.  I had a good time with my sister –in-laws but really as I looked back on this trip, I realized how much I was trying to run away from the hurt and acceptance of having a child with so many special needs.  Running away wasn’t the answer but where I was in my journey to acceptance, this is all that I could do.

A little extra note… Bryson’s camp experience didn’t end very well, Thursday Brad got a call that Bryson had fallen at camp and so Brad had to go pick him up and sure enough Bryson had broken his right arm.  When I got the call, my heart experienced all sorts of emotions.  Here I was Bryson’s primary caregiver and I was thousands of miles away.  Brad managed fine and it was another one of those defining moments.

So why have all these memories surfaced today?  Well I had to let go a little bit more this weekend.  Bryson is currently with the Maple City Chapel Youth group at their annual retreat.  I originally wasn’t going to have him go, I knew it would take someone to be his one on one buddy and my hurts and pride thought “does anyone care to do this for Bryson?”  I was humbled again by caring hearts as the youth pastor came and talked to me about Bryson going along.  I told him my feelings and he immediately said that he would find someone to be that buddy for Bryson.  All the details got worked out and because of the Fairfield football game Bryson needed to come later to the retreat.  Another caring heart called me and offered for Bryson to travel down with her sons after the game.  After the game as the Fairfield players were dealing with the tough loss, we waited around because I wanted to make sure that Bryson was paired up with the boys taking him before we left.

Emotions surfaced again for me, I was letting go of Bryson, letting him drive 45 minutes away with 3 other teenage boys to a youth camp for 2 days, really?  As Bryson walked off the field with one of the players and I walked to the vehicle, memories of walking away 3 years ago rose in my chest.  This is a totally different situation, Bryson was excited about going… but I had to let go a bit more.

Bryson had been on my mind a lot today, I’m thinking about what his blood sugars are?  How he handled the overnight accommodations, is he fitting in?  Worried he might have a seizure.  But God is telling me as I write, I have to let go……. Yes, Bryson has limitations and is different in a lot of ways but my trying to protect him is not going to accomplish anything.  I think I ultimately never thought Bryson would be able to have experiences like these, I think I need to have an attitude adjustment and open my mind up to all the possibilities that my powerful and amazing God has for Bryson and just trust HE will provide for ALL of Bryson’s needs!!!

Letting go is good but boy is it tough……

Encouragement, Special Needs

Emotions in my heart

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bryson and refI have been a basket of mixed emotions this past week as I have watched my son Bryson, be embraced by the Fairfield Football team and coaches.  This is Bryson’s third year of managing, so it isn’t a new thing but it is different because as a 9th grader, he has been thrust into the “big leagues” of high school football.

Listening to his nonstop talk about where the next game is to be played and analyzing if the team is ready to win is interesting but also exhausting.  Bryson is a BIG dreamer, he has shared how he wants to lead the Fairfield Varsity team out onto the field when they get to the State finals at Lucas Oil Stadium. He also dreams of coaching the Colts some day.  He doesn’t think small, he believes all things are possible.  This quality has and will take him far but we, as his parents, have had many situations in his first 15 years where we have had to squash his dreams and tell him No, that isn’t possible for him and helped him to refocus his dreams.  Just one example of refocusing has been from playing football to managing football.

This is why my heart swells with gratitude for the Fairfield football team and coaches, as he has started his high school managing career.  I have not had to squash his dream about wanting to work with Coach Miller or his excitement about being on the sidelines on Friday nights. This dream is coming true and in ways that bring tears to my eyes.  Caring parents and coaches who are making sure he gets what he needs and feels apart of the program.  A coach who has just started getting to know Bryson, notices his love for Notre Dame football and gives him two tickets to the home opener.  Giving him the task at the varsity game of taking water to the refs during the game, those acts of giving and including are what Bryson’s dreams are made of, chances and opportunities.

My heart is full of emotions.   As a mother you only want the best chances and opportunities for your child.  But when you have a child with special needs, it looks different.  When you know that his opportunities are limited, the little things are what really matter.  Over the years I have allowed my heart to harden in trusting people to give my boy a chance, an opportunity.  Time and time again I have been humbled at the kindness and love Bryson has received.  So why do I continue to doubt?  As I sit here and ponder that question, I’m not really sure of the answer.  Maybe it is just the protective mother’s heart, willing to jump and attack anyone who just might hurt their child.  I don’t know but with  tears falling down my cheeks, I do know that I can let my heart soften, that I can trust because I know I have seen with my own eyes people loving, giving and embracing my son just as he is.  Maybe that is all I really want anyway, I want people to see the value in my son, even though he can’t play the game or he won’t get a high school diploma.  Each child has been placed on this earth for a purpose and plan by our Heavenly Father and I know and believe that through the kindness of family, friends, coaches, teachers and classmates, that Bryson will discover what his purpose here is and that makes this mom’s heart swell with gratitude to all who are helping shape him and who love him just for who he is.  Thank you.