Wednesday, August 29, 2012

Morning light

Papa reading to Braydon just an hour before his stroke

 In August 2011, our lives were caught unexpectedly in a storm we named "Hurricane Stroke." While Hurricane Irene's winds and rain beat down around us in NC, my Dad was suffering from a massive cerebellar stroke. The ER doctor didn't want to believe us and tried to discharge him. We refused after he was unable to hold a pen or sign his own name on the discharge papers. I am so thankful we put our foot down that day because it saved his life.

When the hospital let us down multiple times and almost tried to kill my dad (overdosing him, telling us he wasn't having a stroke when he very much was having a MASSIVE one), he was finally transferred to UNC's Neuro-ICU. He needed to be airlifted but there were tornado warnings in effect and the flight team transported via ambulance instead. I have never in my life been so thankful to see a Tar Heel hat than I was the night the flight crew arrived in my dad's CCU room.

After having life saving brain surgery where they removed some of the dead tissue and also a part of his skull, he remained critically ill. We lived hour by hour, minute by minute. We didn't sleep much, we ate what we could stomach, and we watched a lot of HGTV. The nurses, teams of doctors and surgeons, MRI techs, and many, many more nameless remain the heroes of 2011 for me and my family. I don't remember all of their names, but we cannot say it enough...Their care for my dad, and for my family as a whole was remarkable and "Thank you" doesn't even seem adequate.
These are the two chairs that we attempted to sleep in while waiting for my dad's emergency brain surgery to be finished. This by far was the worst night of my ENTIRE life.
Inside the waiting room, and the phone where we learned that Dad had survived surgery.
The ICU waiting room we became too familiar with.

Mom, you were a rock. I shouldn't have been surprised because you always have been. There are so many moments throughout that whole ordeal that are just too difficult to even try to formulate words, so I won't. You know those moments. Yet your faith remained strong, your love and commitment to your husband never waned once. To watch you 1st hand care for, love on and serve your husband in the midst of such difficult circumstances was such an incredibly amazing life lesson for me. Thank you for honoring my dad and sitting by his side. Thank you for sacrificing your own wants and needs just to stroke his hand if he called out for you. Thank you for modeling what selfless love looks like.

In the wee hours of the morning after "night duty" as I was racing home from Chapel Hill to get back to the kids, a song came on the radio by one of your favorite Christian artists. As I listened to Mandisa singing, I began sobbing and had to pull over because I couldn't even see. It was in the midst of not knowing whether you would even make it until I got back up there to see you. But as I looked up through my tears and saw the sun rising, I heard Mandisa's words: "We may weep for a time but joy comes in the morning, the morning light." It felt like a direct message from my Daddy to me...Even if it is my time to go, you will weep for a time, but when you see the morning light rise up, you'll know that I am home. Home, where there is no weeping. Home, Sweetie. Whatever happens, I'll be home." Every time I drive by that spot in the road, I am reminded of that moment. About how sadness cannot last forever. About how someday, there will be no more heartache or pain or suffering. I'm reminded that the darkness cannot remain dark forever, the sun will always come back out.

Now that it is a year later, our "normal" is different. Our normal includes "sleep club" where Papa is the counselor and dinner times always include story time proudly brought to you by Papa. Normal includes a cane, a lot more free time, and having grandkids leaving toys all over your house. Normal is never having enough milk, chewing lots of Double Bubble, and a slower pace. It means Papa's "homemade" oatmeal surpasses any other establishment's breakfast hands down. It means letting go of a huge chapter in your life as a public school educator and opening the next chapter of educating your grandkids on being a part of our family community. It means spending a lot more time learning about God, finding new ways to be the hands and feet of Christ like we are called to do.

Dad, I am so thankful God's plan for your life included more time with us on this temporary stop we call "life". You are so very, very precious to each of us!! We love you and celebrate each day we have together here on earth!

Thursday, August 23, 2012


Photo credit: Christina Valentine Photography

I used to think that I wanted a “normal” family. You know, sons who were star athletes and a daughter who loved playing sports just as much as she loved playing with dolls and ponies. We would be going to academic award assemblies, be playing a pivotal role in the PTA, and be a part of every booster club available. We would only visit the doctor annually for our kids’ well check and (of course) for their annual sports physical. Every year, we’d take vacations of epic proportions: Disney World, Hawaii, Coast-to-Coast road trips, etc. Each one packed with life changing experiences for our kids and for us as well.

But that was before my denial bubble burst, before the reality of my life would no longer be avoidable. That was before the autism diagnoses. Before the checklists, the MRI’s, EEG’s, and sleep studies, before all of the medicines and supplements. Way before commuting 2-3 hours to see multiple doctors seemed like it would beneficial. All of that was before I realized my path would not only test the strength of my character but my marriage as well.

The term “normal” is odd because it is such a vague term and it often depends on perspective. For example, to a seasoned marathon runner, a “normal” run could be 10-15 miles, whereas for a person who is out of shape, the only “normal” run would be running from the car to inside when it’s raining. For a family seeking to eat “Pure” or allergen-free, normal grocery shopping includes multiple stops to local farms, co-ops, the natural food store as well as ordering online from farms, dairies, and other vendors states away. To another, going to more than one store for groceries is just NOT normal and a waste of time. But yet, we all seem to unconsciously subscribe to a notion that there is one universal definition for “normal” especially when it comes to our children.

Even after my oldest son’s diagnosis of Asperger’s, I still yearned for “normal.” Not necessarily for me, but for my son who struggled in school, especially with social skills. He longed to have friends, to be accepted. I just wanted him to have a “normal” experience, just like every other kid. He was constantly bullied, picked on, and would beg me to keep him home. We went to meeting after meeting after meeting with the teacher & the administrators, and we would advocate in order for my son to have a “normal” school experience. With the hand he was dealt in this life, I felt like at least he deserved normal.

My perspective changed, however, when I was able to attend a one day surf camp put on by Surfer’s Healing at Wrightsville Beach, NC. Everywhere we looked, we were surrounded by people who understood what we go through. When Braydon didn’t respond someone’s question or statement, they continued on with the conversation, as if he had responded. They didn’t stare at him and then glance at me with the “How dare you let him be so rude to me!” look. I’ve been plenty of places where the extended “Autism Family” has gathered at conferences, rallies, support groups, etc. But those experiences have never impacted me so much like the day with Surfer’s Healing did.

I overheard one of the volunteers at the surf camp talking with my husband about how the ocean was so pure and every time you go into the ocean’s water, you come out new. As I stood on the beach, with the sun shining down on me, sand between my toes, and seeing the smile plastered on my son’s face, it hit me.  NO! I don’t have to accept anyone’s definition of normal. NO! I don’t have to feel bad that Braydon’s doesn’t meet anyone else’s standards. NO more guilt trips, NO more weeping for what he won’t have that other kids have. No more subscribing to “normal”. He went into the ocean with Surfer’s Healing and just like the volunteer said, Braydon came out new and so did his Mama.

Photo Credit: S.Hughes Photography
So from today on, every morning I will wake up next to a picture of my son surfing as a reminder to say NO! to anyone’s definition of normal. Our normal involves many trips to different doctors and therapists. My son doesn’t have to respond to people if he doesn’t want to and I won’t let anyone make me feel bad about it. Our normal requires extra effort, extra understanding, and lots of extra grace on everyone’s part. Vacation means anytime away from home, whether that’s overnight at a hotel before an MRI or a daytrip to the Lego store. It means tons of flexibility and very low expectations. At birthday parties, whether it is playing by himself, collecting rocks & sticks, of actually participating in the party, I won’t feel embarrassed as long as Braydon is having fun!  We will keep our eyes on what works for OUR family and try to encourage people to enter into our normal to gain some perspective. After all, Epicurus said “Do not ruin what you have by desiring what you have not…” (