Monday, February 4, 2019

Words with weight.

She was part of the conferring ob/gyn residents gathered outside my hospital room on the labor and delivery floor where I would spend weeks praying to get to a safe delivery date for my trio. I imagine that she had no idea how loud she was speaking or how clearly her voice carried. I wonder if she ever gave her words a second thought.

"Why are we working to stop her labor? I wouldn't want cerebral palsic kids. She should really just deliver and let them die."

I was 23 weeks pregnant. I had been on bed rest for a month already. In the hospital for three of those -- without even wiggling a toe out of the bed. I had had multiple ultrasounds and every single time the personalities of these three little bitties was clear. Benjamin (Baby A) was the ring leader and very busy using the other two as his punching bag (To be fair, they were literally on top of him). Mason (Baby B) was a bit private and quite the prankster. Some days he hid behind his sister so that finding him was a huge challenge. And Claire (Baby C) liked to move and groove, wiggle and see how far away from those pesky brothers she could get (Trust me, there wasn't much personal space -- she would get up and as far under my rib cage as possible!).

Young ob/gyn resident didn't know them. I knew them. I was also just arrogant enough in my faith that I thought Cerebral Palsy was not something we would deal with. I mean, I was praying these babies to a healthy delivery date. (But that is a whole different blog post.)

Baby A, B, and C will turn 22 years old this year. Obviously, I haven't forgotten the words that carried into my room on that L&D floor in Chicago.

I can hear her audibly today.

I could hear her audibly 21 years ago when the doctor diagnosed two of my three with Cerebral Palsy.

And yet, if you have met me, you know that even though her words echo, I don't give them worth. Benjamin, Mason, and Claire bring more to this world than even I ever imagined. I chose life for them. I would choose life again. And again. And again. And even knowing that the boys would in fact have CP, I would still lie in that hospital bed for 10 or more weeks and do everything every doctor told me to do to get all three of them to a healthy delivery date. I choose life.






But the thing is, even though the words don't have worth, they do have weight. And I have carried them. They feel heavier some days than others.

They felt heavy the day the mother of the family sitting in the booth next to us took one look at us, grimaced towards us and then said to her family "Oh bless their hearts." It wasn't a blessing.

They felt super heavy when I wanted my trio to sing in the preschool church choir and was told as long as I stayed and helped they could be a part.

I wasn't sure I could bear under the weight the Sunday that we showed up at a new church and the usher pointed to Benjamin (an 8-year-old Benjamin) and said "You should have gotten here earlier with that."

But they feel the heaviest when people complain about having to add accessible parking spaces, or ramps. They feel heaviest when people block loading zones, and when we arrive at church and can't find a ramp.

Here is what I need to say: Yelling about the importance of choosing life is just that -- yelling -- if we don't also figure out how to minister to families like mine. If we are going to be indignant about laws that allow for the termination of pregnancies when differences are found (and don't misunderstand, I am upset about those laws), then we must also be indignant when our church doesn't have a Special Needs Ministry. 

We must also be indignant when the family rolls into our church and can't find a place for the wheelchair to park and the family to sit together.

We must also be indignant when anyone insinuates in any way that people of faith do not have children with medical needs.

We can't ignore families with challenges. We can't make them our projects either. We have to stand with them -- point them to the ramps, then pull a chair up beside them.

The triplets were 12 when they attended jr. high camp with our church. They spent time watching their friends do rock-climbing, Frisbee-throwing, tossing the football during free-time. We were getting close to the end of the week, when a couple of the men approached me (Of course, I was chaperoning one of the girl cabins so that I could dress Benjamin every morning, etc.). The men had been watching the boys and wanted to do something special for them to make up for the fact that so many of the activities had been inaccessible. They wanted to give them a ride down the zip-line. The zip-line, though, was at the top of a big rock wall. 




It didn't seem possible to me. Those men had a plan. They harnessed the boys in and then used a pulley system to pull them to the top of the rock wall. They heaved, and tugged and pulled them up so that they could fly down the zip-line. It was exhilarating.






And on that day -- on that day, I didn't feel the weight of those horrible words at all. Rather, those men could whisper and I would strain to hear anything they said. Their words have meaning, weight and worth because they didn't just share a meme on social media -- they literally worked to support us and our differences. They ministered to us well.

It is time to roll up our shirt sleeves and start tugging people to the top of the rock wall. It is past time.



Oh, and I should tell you: On April 18, 1997 when it was clear we were going to have to deliver the triplets, those ob/gyn residents were clamoring to be in the operating room -- triplets are not an every day thing, after all. My attending physician let me choose who got to be part of the delivery. Two guesses who had to wait in the hall....




Carol - The Blessings Counter

Friday, January 25, 2019

Response from Southwest and how we move forward (literally!)

Earlier this week, I did what I do and used my voice here to gather my wits, organize my thoughts, and purge some very strong emotions. Perhaps you read those musings, my blog on our mistreatment by Southwest Airlines. Many of you were kind enough to share on Facebook and Twitter and help spread the word that the behavior was wholly unacceptable.

One tweet, garnered a response from Southwest. Just one. The responder urged me to send a direct message via Twitter outlining the incident. I did so in great detail.

The initial response was pure public relations:



It is never our intention to disappoint? What? Well, of course not. It is never anyone's intention to disappoint -- is it? But when I reached the part where she told me that "We know that once you land you're ready to be on your way, and traveling with children can be stressful...." I knew she had not even taken the time to read my message to her -- much less the blog post. 

I waited a few hours. My emotions need to subside a bit first. Then I explained that it was evident she hadn't read our story and had no idea what had happened. I explained it again. I attached a photo of Benjamin forcefully-reclined in his chair. I gave her their ages for pete's sake. I wasn't traveling with CHILDREN and I wasn't just eager to be on my way. The Southwest team did a poor poor job Monday night in New Orleans. Period. Not one piece of this was on me or my expectations. 

And yet, I still ended my message to her by offering to help make it better myself. I told her that Special Needs Moms are a fabulously informed group and that I could put together a team who could help with training, work together with the airline to teach their team how to handle/help families like our's.

The next response was warmer -- and from a different team member.




Clearly, Alice is their go-to response writer when they need more feelings. I appreciated her "heart-felt" apologies. They also sent a $250 voucher. So one of us can almost take a trip now. Super.

I keep waiting for my phone to ring. I have carried it around all week, hoping for a call. And listen, I am not hoping for the call because I want to add airline consultant to my resume. I am hoping for the call because I desperately need to believe that someone cares. I desperately need to believe that someone in the "Senior Leadership" hears the saga of our Monday night in New Orleans, and thinks "Oh my gosh, we HAVE to do better."

In the meantime, I am on a mission to do what I can to improve travel for our families. My heart breaks when I hear from other mothers that they simply DO NOT travel because of fear that their child's wheelchair will be damaged/destroyed. It is just too hard.

I hear you, Moms. I get it. I feel that sometimes too -- I know the chair is safe if I am driving it myself in our van. I know that Benjamin is secure on our travels when he is IN his chair, with the supports his body requires. Flying means that we remove his legs and put him in an unstable environment (the plane seats) and furthermore, if we want to save wear and tear on the chair, then we do what we did in Dallas and allow them to simply move the chair from one cargo to the next meaning Benjamin spent the layover in one of the airport wheelchairs completely unsupported!!

Me to Wheelchair attendant at Dallas Love Field: "Does that have a seat belt at least?"

Attendant: "No Ma'am!! But don't worry he won't need one!"

Um, yes he will. Benjamin -- and all the bazillion amazing people like Benjamin -- can NOT hold themselves safely in any chair much less a MOVING chair with no seatbelt!!!!!! I don't care how good a "driver" dear attendant thought he was. That had nothing to do with it.

Sigh.

So let's start making it better. Would it help to have placards attached to our wheelchair like this:






We plan to print this on card stock and laminate it. We'll punch a hole and hang it on the wheelchair the next time we travel.

We already remove the headrest (to shorten the chair),  the seat cushion (it is inflatable so we don't want it accidentally punctured); the arm that holds his iPad. On his last chair, I could easily unplug the joystick and we would carry that on the plane. But this chair is SO heavy (400 lbs) that it is almost impossible to push in manual mode (Please ask me, I am all too aware of that after Monday night!) that we leave the joystick on in case they prefer driving it with power.

Can you see us loading the plane carrying all of this? Perhaps you have. Hear me. We are willing to do our part. We are not asking for a one-sided system. What else can we do to make traveling possible for our family and for all the families like ours? I am listening?? I am ready to spread the word!



Carol - The Blessings Counter

Tuesday, January 22, 2019

A letter of apology.

Dear Brooke -- of the New Orleans Southwest Baggage Claim Customer Service Office,

I once taught my children that if you must say "I am sorry but...." then it is probably not a sincere apology. Sincere apologies should be "I am sorry."

So, I guess I am sorry that I can not offer you a sincere apology for losing it with you tonight. Because I am sorry. BUT.

I am sorry because it really wasn't your fault that the baggage handlers had dismantled Benjamin's wheelchair (in Dallas or Philadelphia possibly, if not New Orleans) in such a way that it was completely reclined and with zero power to sit it back up. It wasn't your fault that after waiting inside the empty airplane for half an hour, I had to transfer my son into a lying down position because someone with your airline had treated this chair with absolute disregard for the life that is dependent on it.

I am sorry because it really wasn't your fault that though your team DID push the 400 pounds of wheelchair and 120+ pounds of man up the bridge, they went no further. It wasn't your fault that they left us in the gate and left me to push the 500+ pounds through the New Orleans airport, up multiple inclines while my 13-year-old carried all the carry-on luggage herself to try and help me when NO Southwest crew offered a finger.

I am sorry because you really didn't know all of that had occurred before we walked past you looking for our luggage. But, and here is the reason I feel like I can not be sincere with my apology, you DID see me pushing a reclined, pained, young man. You saw my red-face. You saw the sweat on my brow and running down my face. And when I realized you had my luggage, YOU could have offered assistance in some way when you heard my son panicked that I was walking away from him while he felt he was in such a vulnerable position. You could have explained that you needed identification now that our bags were in your possession -- i.d. that you wouldn't have needed had we been able to grab them ourself off the conveyor but because of your airline's delay now we were facing you.

Instead, Brooke, you were harsh. Instead, you told me I couldn't touch that luggage without identification. I explained that we had been delayed on the Southwest airplane because of the wheelchair. You said you didn't care. I was trembling from exhaustion. I am not sure I have ever trembled from exhaustion before tonight. But nonetheless, I walked back to find Cate who had my purse in her efforts to help, and was walking from the end of baggage claim. You and your co-workers (I am really sorry I don't have their names) rolled your eyes and ridiculed me. We saw it all. I brought you my claim tickets. I dropped them because my hands weren't even steady. We took our little bags from you.

You didn't even offer an "I'm sorry this was a rough experience." You returned to the desk where you and your team continued to speak about me loudly enough for me to hear. I told you I would write a letter. You told me you would write one too. What does that even mean?

I am sorry that you did not deserve all of my wrath tonight. But I am also sorry that you did not deserve to be working in a customer SERVICE area and representing an airline that claims to care.

Sincerely,
A mother who is always willing to work harder so her son can travel, but will go to bed tonight sore from physically exhausting herself, sad from setting a bad example for her 13-year-old by losing her temper, and broken-hearted that you just didn't care.

P.S.
Dear Southwest Airlines, your pilots were charming; your flight attendants delightful and helpful. We drove three hours past our nearest airport JUST so we could fly with your airline this weekend. But if you can't educate EVERYONE who wears Southwest on their lapel about what good quality customer service means, then I'm going to think long and hard before I do that again.