Tuesday, April 17, 2018

Teeny Tiny Trio Turn Twenty-One!!!!

For the first time in 21 years, I can't get to all my crew tomorrow -- or today, or this week.  The last time I couldn't get my hands on them on April 18th, was the actual April 18th of their birth! After almost ten weeks of bedrest, and an emergency c-section at just 28 4/7 weeks pregnant, those teeny tiny babies were delivered from my body and whisked to the arms of a waiting medical team and into the Neonatal Intensive Care Unit. It would be 24 hours before I laid my own actual eyes on them and got to touch their sweet little selves. It would be longer than that before I could hold them all.

So for 21 years -- TWENTY-ONE YEARS -- April 18 has been one of my favorite days of the year. Even when Wade was in training and time off was hard to come by, we would set aside the time to plan a party to celebrate the birth of this terrific trio!

Celebrating the milestone each year was more than just a birthday -- it was a day of thanksgiving! The triplets were not due to be born until July 7. When we were told they would probably be early, I thought maybe they would be born on my Dad's birthday at the end of May. But it never occurred to me that we would have an April delivery.

 From the moment we knew delivery was the only option, we were terrified. I had been receiving injections to help speed their lung development. But it was far far too early. I was petrified as I was rolled to the operating room. But each of those teeny tiny babies gave a cry to let me know that they were breathing in spite of the warnings from the doctors to the contrary.

April 18 is not just another day to pass the years of their lives -- April 18 is a day of thanksgiving for their very life, their very breath! And I love celebrating them!!

This year Benjamin is in the middle of a theatrical production. 

He is right in the midst of dress rehearsals and finishing up his JUNIOR year of college and as such, the birthday celebration will take a backseat. For now. But rest assured, we will celebrate this our first-born (by a minute and a half!), and give thanks to God for the way he uses his life.

Mason will spend his day on his own college campus wrapping up his Junior year. 

He'll barely get home for summer before his research takes him off and away again. I am so proud of him I could just burst. No one would have guessed the baby that came in to this world weighing barely 2 lb 3 ounces would accomplish all that this young man has already!

And Claire will spend her day -- as she has this whole semester -- in Argentina where she is studying abroad and enjoying every single moment!

She is spreading her contagious joy and her care for all the marginalized far and wide. I still see the itty bitty baby girl with the giant pink bow her nurses made for her but she is quite an amazing lady already and I couldn't be more proud!

The day after they were born, I was able to hold Benjamin. Mason was too tiny. They wanted him to gain some ounces before we held him. Claire was too unstable -- her little heart rate wouldn't stay steady. I have wanted them within arms' reach every day since. But the miracle of April 18 is NOT that they took a breath and JUST lived...no the miracle of April 18 is that they took those breaths, and took their very lives, and are using them to make the world a better place -- in big out loud ways. And so I might not be able to cuddle them close tomorrow -- But I will be celebrating them big!! So so big!!!

Happy Birthday, Benjamin, Mason, and Claire!!!
 I love you so!!

And rest assured, that as soon as we are all back to together again, we are celebrating....and I might need you to stay within arms reach for a minute or ten. 

Carol - The Blessings Counter

Sunday, March 18, 2018

Planes, Wheelchairs, and Automobiles....

I have carried Benjamin onto airplanes since he was a little bitty thing. We have driven the power wheelchair to the door of the plane and I have scooped him up and carried him on. We love flying Southwest airlines because they do not have assigned seats. They let us board first and I simply pick the second row of seats and loading, while not easy as Benjamin has grown taller than me, is a relatively smooth process.

Flying on planes with assigned seating can be a bit trickier. For years, we simply tried to pick seats close to the front of the non-first class section. When we went to Argentina on our mission trip I tested my strength limitations when I had to carry him to the back of the international airplane! It was after that flight as a matter of fact, that Benjamin and I had a heart-to-heart and I convinced him that while I could still carry him on Southwest flights, we would have to use an aisle wheelchair for flights where the seats are assigned -- and not necessarily in close proximity to the doors. He warily agreed (His love of traveling outweighing the fear of those aisle wheelchairs.).

Have you seen the aisle chairs used on airplanes? They are small thin wheeled chairs that barely hold someone as thin as my Benjamin. They have seat belts for the legs and chest but usually one or more of these is broken off. Benjamin does not have the trunk control to sit in these without the seat belts tightly secured to hold him somewhat in place. And even then, he needs someone to help him keep his arms from tensing up and hitting every seat he passes by (the plane is empty when we load so this is about his safety not others.). The very real fear that he is going to fall out causes physical discomfort as well because his whole body reacts -- legs and arms tense up causing tightness of all his joints and overall discomfort. The ONLY reason he is willing to do this is because he is afraid I will hurt myself if I try to carry him through the plane.

And so last Saturday, we found ourselves loaded on the Delta plane in Atlanta, GA waiting to head to our new home airport in Philadelphia. I had dismantled the wheelchair as much as possible, helped Benjamin survive the aisle chair, and lifted him from the aisle chair to a plane seat. Once he was strapped in and stable, the flight attendant told me that the Delta ground crew could not figure out how to push the wheelchair. I got up and off the plane and headed back to the jetway where I gently explained as much about the workings on that chair as I could. I then looked the Delta employee in the eyes and said, "Please take care of this. It is not luggage. It is my son's legs." He nodded that he understood.

I sat back down. We snapped a selfie to send to Dad to let him know we were safely on board and heading his way. And we giggled about how hungry we all were.

Then I turned and looked out the window.

There was Benjamin's chair. There was the Delta employee I had begged to take care of it, and two of his co-workers. They were jerking and tugging and basically fighting with the chair. 

And it was raining.

And this didn't take a couple of minutes.

It went on and on and on.

I began to try and talk to them (they couldn't hear me.). I began to feel panicked.

I caught the flight attendant as she passed by and asked her if she had any way to communicate with the crew attempting to load the chair. "I think they need my help," I pleaded.

Eventually, another crew member joined them and they lifted the chair onto the belt. Then as it teetered on the edge they tried to drive it. It almost drove off the belt. I was in a complete sweat by this point.

By now, the flight is more than 30 minutes late. By now, other passengers are turning to us and commenting on how soaked the chair will be by the time we get to Philadelphia.

By now, I have raised my husband's blood pressure with my frantic texts because taking photos and sending them to him is the only tangible thing I can do.

Finally the chair is loaded. Finally the plane takes off. And I take a deep breath and send a few arrow prayers for the safety and integrity of the chair.

When we reach Philadelphia we remain seated. Oh I am sure it looks like we get special treatment loading the plane first. But trust me, being the first on and the last off can make for very very long confinement on those planes.

But I can't complain about that ever again, because on Saturday, the crew came on to clean as soon as the last passenger was off (last other than us of course). And then the special services employees arrived with the aisle chair. I asked them if Benjamin's power chair was there and they assured me it was on its way and they needed to get us off the plane.

So off we went.

And no power chair.

And the temp on that jet way -- freezing.

Remember how uncomfortable and unstable Benjamin is in an aisle chair? Well that is magnified when he is cold and shivering.

So after sitting there for minute, I knew we couldn't stay. Where is his chair? At this point they tell me it will be a few minutes. I tell them he can't sit in the freezing cold for any minutes. So they push him -- one person pushing, one practically pulling, and me trying to hold him in the blasted chair -- all the way up the jetway and into the crowded gate.

Benjamin's heart is racing. His body is violently shivering -- now not from cold but from pure fear that he is about to fall out of this chair. And still NO WHEELCHAIR.

I am struggling to keep my calm. The Delta staff are trying to help but there is nothing they can do except keep harassing the ground crew to get the chair up as quickly as possible.

So fast forward a week, and we land in the Atlanta airport after our week in Delaware. I have seen the bruises on Benjamin's back from the struggle to keep him in that stupid aisle chair longer than necessary ALL WEEK LONG. I am basically in full-mama-bear mode by the time the last passenger gets off the plane but I am hopeful that we won't be rushed off, that the wheelchair will arrive in a timely manner this time. I am hopeful.

But the cleaning crew come on board. Bless them, they obviously have to work against a strict ticking clock and we are frankly in their way.

The special services crew arrive in just minutes with the aisle chair. I block the path to Benjamin. I try to smile but am practically shaking. "Is his chair on the jetway?" I ask.

They go back and look even though I can see it being unloaded out the window.

"It's not but we need to get him off. We'll use this," they tell me, pointing to the aisle chair.

And all of a sudden Mama Bear can not be contained. "We will not leave this plane seat until his chair is sitting on that jetway. He is not stable in that chair and I will not force him to sit in it longer than necessary. He stays here."

They don't know what to do. They back up. (Bless their hearts.) And eventually leave the aisle chair and disembark -- presumably to urge the team to get the chair to us.

We sit.

And sit.

And sit.

Eventually the pilot comes on. I hear him ask the flight attendant -- still at her post at the exit door -- what the hold up is. I hear her explain. And then I hear this pilot (God bless him!) exclaim "I don't blame him one bit. I wouldn't sit in that aisle chair until my chair was waiting for me either!" And then he came down the aisle to us and said, "Sit. Be comfortable. No one is rushing you anywhere."

Ultimately we wait about half an hour (it felt like way longer.). I know the crew were stressed with keeping their tight schedules. We had to roll past the passengers lined up to board. They seemed anxious and I prayed we didn't cause any of them to miss connections.

And then I thought wait -- IF the airlines would simply remove ONE seat, install tie-downs (like my van has) and let Benjamin STAY IN HIS CHAIR on the flight, all of this would be alleviated! I wouldn't have to worry that the chair is being torn to shreds by the ground crew. No flights would be delayed as the crew fought to load the chair. No flights would be delayed as they fought to unload the chair. Benjamin is MOST COMFORTABLE in his chair with the support he needs -- even the plane seats are uncomfortable for him ultimately.

It seems such a win win situation for all of us -- airlines don't lose money, people who love to travel but use a wheelchair gain a whole new realm open to them!

If you know who I need to call to make this happen -- I am all ears! (And full of Mama Bear sass!)

Carol - The Blessings Counter

Tuesday, March 6, 2018

The missing house and then some.

A house was just torn down one block from us. I drive by every single day at least four times (Should we discuss the myth of "stay-at-home" motherhood?).  I am mesmerized by the pile of rubble because for the life of me, I can not remember what the house looked like that was standing there just days ago.

If pressed, I would tell you about the neat yard in front of the house next door. The cute fence that makes me smile.

If asked for more detail, I could regale you with the addition the home two doors down made recently. I was captivated watching the renovation from my daily drive-bys.

But the house that is now gone -- I have nothing. I can not conjure up a single memory. I was obviously so busy looking from cute fence to cool renovation that I missed something else entirely.

And though I know it is completely ridiculous, I feel terrible about that. Actually, I feel sad. What did I miss? Was it in disrepair? Did it need an overhaul or just a gentle renovation? Was there a story?

And even as I ponder, I can't help but think how often I rush from place to place possibly passing by someone who needs a word, a gentle touch, a bit of time to share their story.

And then I am forced to take a deep breath and recognize that it is far more than just my rushing from place to place -- sometimes, I get so caught up in being the family with Cerebral Palsy, that I can't see much beyond those walls.

Last week we went to a theatre show. The front row was reserved for us with a chair removed for Benjamin's wheelchair. It was perfect.

Except it wasn't perfect for the people behind us apparently. We heard the rustle as they moved but wouldn't have thought much except a child asked the parent why they were moving, to which she replied, "Someone tall sat in front of us." I turned and smiled trying to make a joke because I was certain she didn't mean for us to hear -- "Oh, people say that about me all the time," I said. (They don't -- I am not even 5 feet 2 inches tall.)

She didn't acknowledge me and repeated the sentiment another time causing my daughter to lean over to me and say in less than a hushed whisper, "Mom, do they know just because he has CP doesn't mean he is deaf?"

The show began and it was fabulous. Except for the simmering hurt and anger that I couldn't push down. I was consumed thinking that anyone would resent us being in front of them. I was consumed with hurt that the world just thinks my family is in the way. I was consumed.

After the show, I asked my son how the whole thing made him feel.

Would you like to know what he said? 

"Oh it didn't bother me. Maybe my wheelchair blocked her view some."

And then he continued discussing his favorite parts of the musical.

See it didn't affect him in the least that the family moved OR that they said out loud that the reason they had to was the tall theatre-goer in front of them. He didn't let it interfere with his immense pleasure in the musical literally right in front of us. He didn't get so caught up in his own stuff -- his own self -- that he missed everything beyond that wall. 

I don't think I will ever figure out what the house looked like that is no longer standing. But oh how I hope I figure out how to follow the example my son sets for me. And soon!

Carol - The Blessings Counter