Friday, January 8, 2016

A New Beginng: "Keeping It Real"

Oh I like to "keep it real".

Whatever "it" is and whatever "real" is.

I do try to be honest about what I put out for others to read and see. But I think we all know, on some level, that like most...I still like to put our best foot forward, my best foot forward.

You can ask my kids, we are guilty of taking 80 shots to get just the right one to post on Facebook. Sad I know, but true none the less. I don't torture them, they all like to post the best shot so for the most part they are up for "do overs".

I don't think it's that unusual to like to appear as if I have it all together, or at least part of it together...some of the time. I probably need to pray about this.

In an effort to be honest I will tell you, things have been pretty smooth lately. Sure the holidays had been difficult this year since my mom passed away in April. We were all sad and grieving the loss of her and our life long family traditions. We struggled a bit to find our family footing and form our new traditions, but I think we did well. I think she would have been proud and liked what we did.

By now I am sure you can imagine there is probably more to my story, a twist in the plot, an unforeseen bump in our road. We were focused on the ending and beginning of traditions, we had no idea what was just around the corner for us.

This new year brought with it a new beginning, one I feel safe in saying none of us are excited about.

You know that I can only attempt to imagine what some of you are going through, dealing with, and experiencing. And I can share with you only what we are going through, dealing with and experiencing. My prayer has always been that in sharing our experiences there will be comfort and understanding found in our common, and sometimes uncommon, ground.

We have faced many challenges as a family. We have traveled the amazingly hilly, pothole laden and beautifully scenic road of life together, and for 16 years now, we have taken Autism along for the trip.

It's been ok, pretty good actually. I mean, we have our moments but for the most part...

I was comfortable, it was familiar and I have to confess...I felt like I had it figured out. I had made my nest in my bubble, settled in and frankly...I was content.

Maybe complacent is a better word.

I will never hesitate to remind you God has a plan, God created my son, and God is never surprised.

Keeping it real...

I was surprised, and so was my heart...

We had all settled in to watch a movie, all six of us. (We do have five children, but our oldest daughter is married and lives in another state.) We were watching the original Star Wars movie, and forgive me I really know nothing about Star Wars but I was enjoying it. All four of us girls were on the couch. My husband was in one chair and Cooper had assumed his usual night time post medicine position in the recliner with his Ipad.

We were comfortable, settled in without a care in the world, so to speak.

 About twenty minutes into the movie everything would change. We all heard it, a strange sound.

I looked over and for a half a second I thought he was yawning and stretching, his arms were pulled back, his mouth was open and he was completely stiff. One quick look at his eyes and my heart cried...

"No, God why?"


My husband and I both jumped up and ran over to him, by this point he had slumped forward and started shaking.

We knew he was having a seizure. He had never had one before.

As we did our best to help him and call 911, all I can remember thinking was, "I have to speak slowly and clearly so that they can understand our information. I have to make sure they know he is Autistic and nonverbal."

His breathing was not right and he was turning blue, and then the seizure stopped. Slowly his breathing returned to normal and he opened his eyes.

For me it felt like the seizure lasted forever, for Cooper, I may never know how it felt.

I know that many of you live with this and even experience this on a daily basis. My heart now breaks in ways it was not able to break before...and I really wish it didn't. But if it has to, then I will choose to actively trust in God's promises.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 NIV

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go." Joshua 1:9 NIV

Because I don't know what else to do.

I cried the entire next day. I was surprised that in that instant my first response was "no" and "why?" and  It took time to settle my thoughts and my heart. Then I heard the words of this song by Michael W. Smith...

"You are the anchor for my soul. You won't let go" and it occurred to me that I very often think "I won't let go." 

I let go.

I am a mom.

I am human.

But God.

He will not let go.

  "We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19a NIV
I have searched for the words to pray, for my son, for my family for myself and for you...
Dear Heavenly Father, in our brokenness You are there, in our weakest moments when we are struggling to hold on with our last ounce of strength and we let go...You are there. You are the anchor for our soul, firm and secure and God help us to remember that You will not let go. You will not let go of us and You will not let go of our children.  Amen


  1. Beth - so sorry to hear about Cooper's seizure. I know how you feel. DC never had a seizure in his life until this past summer (he's 24) - He's had two/ June and August.
    Unfortunately I can't offer you more than "I know how you feel" as nothing anyone will say will make you feel better. It sounds as if they both have close to the same type as well. If you do need to talk about it, please feel free. I do know about the newness of it all and the waiting for the next. I hope is was just a random occurrence and all will be fine. If it is not, I am sure you will do whatever you have to, to keep him safe and healthy. They tell me that one day I will just learn to live with it and I am sure you will as well. I do understand just how you feel, though. I just wanted to say that.

  2. Thank you so much Vickie. It is nice to know that we are not alone in the waiting and not knowing, in the newness of it. Although I do hate that we are not the only ones. I appreciate you taking the time to let me know you do understand and I will take you up on your offer to talk soon because a do have a few questions!

  3. I have seen my daughter have tens of thousands of seizures and not one day did I get used it! What it has robbed her and our family, our life her life all of it! But in that are the pure blessings that I surely would not have because of it. Maybe it's the confirmation statement of faith that she described her faith through an iPad app that her friend recorded for her or maybe it was the role I had at he epilepsy foundation that I served as a parent expert or maybe just all the families and kids that I met! So so many blessing but in the end epilepsy is hard, long and lonely! I'm here for you if you ever want to talk or ask a million whys! Hugs from Wisconsin!

  4. Wow, thank you so much Jenny. It has meant so much the people who have taken the time to comment and reach out to us today. I appreciate your words so much there is definitely comfort in knowing we are not alone and have others to ask our questions to. I felt like we left the hospital with no information and little direction. I know that it will all take time to sort through and attempt to find our feet again.

  5. Beth,testing (TRYING ) again 1,2,3

    1. If you are trying to comment you did it!! 😊