Friday, April 19, 2019

Happy 22nd Birthday to Benjamin, Mason, and Claire!!!!

Today is the 22nd birthday of my amazing trio. And I will just tell you that birthdays while your kids are in college are for the birds. I haven't been able to see them, hug them, celebrate them all day. When they were growing up, I always let them take the day off from school so we could play -- but today was the final regular class day for Benjamin before his finals exams and one of the last for Mason and Claire. We couldn't just take the day off and play.

We also had tornadoes in the area all afternoon. So I couldn't just get in my car and make the college rounds.

No, rather, I have sat and watched a feast of sappy rom-coms with my 13-year-old who I think was missing the celebrating as much as her mom.

It occurred to me the second or third time Cate and I had to jump into the closet because the tornado sirens were going off that today wasn't that much different than their actual BIRTH day.

I didn't get to see them that day either.

Sweet first photos!

On April 18, 1997, I had been already been in labor for ten weeks. I had been on bed rest in the hospital for nine of those, not even allowed to wiggle a toe off the edge of the bed, never sitting up. I had taken a myriad of shots on a daily basis to promote lung development and we were praying them to a safe delivery date.

My due date was July 7. I knew they would come early, but I was shooting for May 27 -- my daddy's birthday. It never occurred to me -- never -- that we would have April babies!

But my body had done all it could do. Physical changes for me -- not the babies -- mandated a C-section on that April day. 

All together in one swing in the NICU!

As I was wheeled into the operating room, my nursing team filed in to kiss my cheek one by one. They had been caring for me -- and for these three -- for months. They all told me they were praying.

The room was full of medical personnel. Doctors and nurses for me, and an entire team for each baby.  Poor Wade, I was too scared to talk and he had NEVER seen me unable to speak. I think that scared him most of all.

The doctor warned me that the babies might not have enough lung strength to cry upon delivery. I was prepared. But each one of my mighty three gave a cry to greet the world before being whisked into the waiting hands of their own personal medical team.

I did the smocking for these little outfits while lying in a hospital bed -- my
dear friend Linda turned them into heirlooms for their baby dedication!

 I was taken to the recovery room and vividly remember just being so cold. My doctor got me this wonderful heater that blew hot air under my blankets. (Honestly, I dream about that heat some days.)

I was so anxious to see my babies but I wasn't yet stable enough -- my body just had had enough. Those precious recovery room nurses saw my angst and one of them dug through the cabinet until she found a Polaroid camera. She handed that camera to Wade and told him to go get me some photos. Wade was so hesitant to leave me but he too, was eager to see our babies. I needed him to go to them. He came back with my first visual of the little people I had been talking to for months. I have never loved three photos more.

I would be wheeled down to meet them myself 24 hours later when it was deemed safe for me. They were the most beautiful little bitty things I had ever seen.

Those tiny babies would spend the next weeks in the NICU where one would have a good day, one might stay steady, and one would take two steps backwards all before switching it up the next day. I very vividly remember thinking that as long as the days in that NICU felt, I was going to blink and they were going to be grown up. And I was so very right.

Today, they are finishing their final semester of college. All three of those babies who spent their childhood doing every single thing together -- will graduate in just a matter of weeks. And all three of those babies who were born almost three month too early, make me so proud I could burst!!!

They better be ready to celebrate the 22nd Anniversary-of-the-first-time-I-got-to-see-them-with-my-own-eyes tomorrow -- because that is totally a thing!

Buzz, my three, and the little sister!

Happy birthday, Benjamin, Mason, and Claire! You are seriously more loved than you can ever imagine!

Carol - The Blessings Counter

Thursday, April 11, 2019

No matter what.

We worked in the garage over the weekend. Actually, work might be a bit of a stretch.

We definitely sorted and purged and did a lot that felt like work. But at one point the girls came out to help. And the girls.....well, they kept uncovering treasures. And these treasures required them to sit and read all manner of things -- from favorite children's books to journals -- as well as to cuddle childhood toys, reminisce about why they saved this, or that.

There wasn't a lot of work going on, so I sent them inside.

And then I got busy...

Reading the notes in some of my prayer journals.

I guess the apples didn't fall far.....

When I opened a Bible Study from the bottom of one box, I expected to glance through and cull it out. I am trying my best to really sort and sift and purge. Oh for goodness sakes, we need to purge!

But I quickly realized this particular study was done during my first year of motherhood. I also realized that some of my most raw emotions were expressed in the prayer journal portion of some of the pages.

Mason sent me a text earlier this week with a question for a class-discussion: "If you could medically ensure that we never had Cerebral Palsy, would you?"

We went back and forth discussing this for a while. Because the answer is complicated. Did he mean young mommy me? Or did he mean me today?

Because even if I didn't remember those emotions so clearly, I had a veritable time-machine  just sitting in the middle of the garage waiting to be purged...

One morning in 1997, I had written out Psalm 25:4-5

"Show me your ways, Lord, teach me your paths. Guide me in your truth and teach me, for you are my God, my Savior, and my hope is in you all day long." (NIV)

I then thanked God for sharing Benjamin, Mason, and Claire with me before confessing that the desires of my heart would be for Benjamin and Mason to catch up developmentally with their sister. My prayer was for Benjamin to roll-over. We monitored every movement he made. We coerced, helped, and begged him to reach that milestone of rolling over. My prayers reflected that. 

One morning I typed out this scripture:

"Send me your light and your faithful care, let them lead me; let them bring me to your holy mountain, to the place where you dwell." Psalm 43:3

I underscored the "your" before mountain as I then confessed that MY mountain would be for Benjamin and Mason to be "healthy, normal children." But concluded with imploring God to help me focus on HIS mountain -- His best for my children.

So clearly, if young me could have prevented my boys having Cerebral Palsy, I absolutely would have. I begged for their healing. I pleaded for a miracle. Repeatedly, I urged God to heal them so that we could give Him all the glory. 

It is birth month for my beloved three.  More than twenty years have passed since I wrote those words. More pointedly, in eight short days, those itty bitty babies will turn 22 years old.  They are full-grown adults.

And so today, I have the benefit of knowing who those babies become. I have the luxury of knowing that every obstacle, every surgery, every therapy session has molded and grown all three into absolutely amazing adults. I have the advantage of having watched them set goals and surpass them.

I have the gift of knowing that there are three circled dates on my calendar in early May marking the successful college graduations of these babies born three months too early -- college graduations that will include all manner of honor cords, accolades and degrees!!

And more than ALL of that -- I have the extra bonus of knowing them and finding them absolutely delightful!

Motherhood is hard. If I could have protected Benjamin, Mason, and Claire from the pain of the boys' having CP, I absolutely would have. I wish they could have avoided painful surgeries. I wish we could have spent more time playing and less time at doctor and therapy appointments.

And yet, as Mason and I moved our discussion from texting to a phone call, he and I pondered whether it was the obstacles that made them the adults they are today. Would they so passionately advocate if they had not had to knock down road block after road block to pursue their dreams? Would they possess the personalities that draw others to them, without the empathy that surgery after surgery has given? Would Dad be committed to the care of children with Cerebral palsy -- would he be doing life-changing research -- were it not for the fact that CP has colored our family?

Obviously, we have no idea what life would have looked like if these babies born in a bundle had arrived on time rather than so very early. We have no window into what they would have been without CP. But this, this I know with absolutely certainty: These three -- and their baby sister -- are changing the world. They are using their gifts -- many of those honed through their struggles with CP -- to spread hope, education, and advocacy. They urge me to share their story -- willing to have their lives shared in order to give hope to even just one family like ours. I am not the same woman who wrote in that journal twenty-something years ago. They have taught me and grown me more than I could have ever imagined.

And yet, some things don't change. At the end of one of my prayers in 1997, right after begging God for healing, I wrote this:

"But Father, I plead with you to prepare us as a family to bring you praise, honor, and glory no matter what the future holds!!"

Twenty-two years later, I would just like to add a couple extra exclamation points.

Carol - The Blessings Counter

Thursday, March 21, 2019

The "W" Word.

I stood on a stage yesterday before more than 2,000 people from 39 countries and pretty much admitted to them all that I am not the smartest mother on the block.

I completely confessed to some of my worst parenting.

I wish I could say I was exaggerating.

I wish I could say anything except the truth.

See, for years, I wouldn't allow the word wheelchair to be spoken in Benjamin's presence. I called it the W word, and insisted we speak in code if it became necessary to use the word at all -- something I frowned on in principal!

I can remember the day it started as clear as the day it happened:

Benjamin was trying a different gait trainer -- a walker with wheels and a hip belt that attached him to the walker. We were taking advantage of the nice temperatures in our Minnesota home before the snow came, and so he was walking outside. Lynn, our precious wonderful physical therapist, looked at me and said it might be time to talk about wheelchairs.

I bristled up before she finished the sentence.

"Don't say the W word in front of me. And DO NOT say it in front of him!"

I wasn't using my sweetest tone.

For me, a wheelchair meant limits. 

A wheelchair meant closing the door to walking.

And closing the door to walking meant different. We would be different.

I was petrified of the W word. It made me physically hurt.

The W word was an absolute statement that we were disabled. And the disability was not going anywhere. 

I had not one single clue on how to progress past that fear.

Two guesses who did:

Benjamin's physical therapist at the Mayo Clinic (yes, we had a ton of PT plus a ton of OT every single day, every single week.) was working to get him from the stroller to his walker. She urged and coerced, and prodded. And finally he was out of the stroller and into his walker. Only, he was facing backwards.

Kim: "So what are you going to do now?"

Benjamin didn't even take a breath before telling her: "Well, I guess I'll do the hokey-pokey and turn myself around!"

My son was bright, smart, articulate, and so funny. And I was forcing him to enter every single room too exhausted to shine.

I knew it was time to talk about wheelchairs.

When we went to try one out, my sweet boy – always intuitive – looked up at me and said, “But Mommy, I walk. I don’t need that.”

I wanted to scoop him up and run out of there but before I could he noticed the joystick and a smile lit his face like I had never seen before. He wanted to try one!

The moment he realized he could move around his own space AND talk at the same time, he smiled even bigger than he had when he saw the joystick.

See, I was completely blocked by my own paradigms. I was wrapped up in how a wheelchair made ME feel. I was worried -- in a way only a Southern mama can be -- about how things would LOOK to the rest of the world.

I was a terrible mother.

Because for Benjamin:  A wheelchair was a key to freedom. A wheelchair meant he could roll into a room and still have plenty of energy to entertain all around him.

A wheelchair meant he could keep up with his friends.

A wheelchair meant he had the stamina for the school day.

He could graduate high school. He could travel the world. He could make friends, have fun, LIVE life!

So often, we enter the journey of parenthood with all manner of ideas and paradigms for how it will look. And dear mercy, even if our children are NOT born three months early and DO NOT have Cerebral Palsy, the road is very rarely what we expected. 

A wheelchair was not a failure on Benjamin's part. 

A wheelchair was not a last resort.

A wheelchair is a tool that helps Benjamin in an area where his body has a deficit. It doesn't define him anymore than the glasses I wear for my body's deficit define me.

Far more important than the fact that he rolls through life -- the fact that he writes in a creative voice that looks effortless. The fact that he speaks off the cuff with insight, wisdom, and an empathy for all around him. The fact that he is a fiercely loyal friend. And a caring, loving son.

It is time to spread the word -- walking is not the end all, be all. It isn't.

Meeting Micah from "Speechless".

Finding your path to being a kind, loving, contributing member of society -- oh that is far more important than whether you walk, crawl, or roll through life.

I wish my young-mama self had known that. 

Carol - The Blessings Counter