Sometimes you have no other choice than to move foward

There are somethings I forget people don’t know about me until we start talking. Like how I met my husband Robby online—something that usually draws a few laughs because the online dating world has changed a bit since the days I referred to my new boyfriend as Mr. EHarmony.

It’s been 7 years since I met my husband online. And while taking a second stab at marriage has turned out to be one of the best things I decided to do, each relationship always seems to provide its own set of issues.

We all know that no marriage or family is perfect, but we make other people think our lives are really better than they are, with staged pics on social media or the way we clean the hell out of the house before company arrives. I’m guilty of it even though I try to act like being human doesn’t bother me.

Being human sometimes can take its toll on the best of us. I’ve had many moments of being human from raising a special needs child who can’t go to the birthday parties with the bouncy houses and having to act like it’s fine because we “already had other really cool plans.” Or acting like I liked being alone on holidays or Valentines after I was divorced because I was “so much happier alone.” The time I had to go on government assistance so I could take care of my children after my divorce or trying to keep up with my richer friends in my old neighborhood and acting like I had other plans when I had to turn them down for vacation offers or weekends on the beach.

I hate for people to feel sorry for me. I hate that "pity" look you get or the way people try to “help you” by bringing over free food and clothes or offering to do something cheaper so you can join along. Over time, things like that usually mean less to you—if you’re lucky enough to learn that life is so much bigger than you and those little things don’t really matter.

And it’s the fact that I’ve always tried to avoid the pity that makes what I’m about to talk about so hard. But if I’ve learned anything through this blog, it’s that when I’m honest, I’m better and I always connect to someone else who understands how I feel. So hopefully I can do that with this.

When I met Robby 7 years ago, I learned—right before our first date—that he has end stage kidney failure and does dialysis every night at home. We joke now about how difficult it is to bring up kidney disease in a conversation, but damn it’s hard.  There are few conversations in life that can seamlessly lead to “I have end stage kidney failure.”

But, during one of our many phone calls when we first connected online,  I told him about having a daughter who has a rare disease called Arthrogryposis and how she has bilateral clubfeet and joint contractures and it makes it hard for her to walk. He said, “I understand that. I also have a hard time walking.” And I stopped talking. I was not expecting that. See, when you do the online dating thing, you do that thing where you put your best face forward. It’s part of what make the stories of online dating so funny because we’ve all had that person we met who looked nothing like the photos that were posted or who really didn’t enjoy all the activities they listed on their profile. 

So, I asked Robby what he meant, and he explained his kidney disease and the type of dialysis he did. After we got off the phone, I looked it up. I had never known anyone on dialysis. As far as I knew, it was a death sentence. I read for hours about what causes kidney disease—is it curable? Can you do dialysis forever? Does it get worse? Will you die soon?

And the big question I had to continue to ask myself as I got to know Robby better—is this something I want to take on in my life? After everything I had already been through in my life, did I really want to make a life with a person who was already on dialysis?

But as I got to know Robby and we began to fall in love, I made the decision that it was something I could take on. He takes care of himself and his medical needs and wouldn’t need to depend on me for that.  And he never has.

I had already learned that life was a gamble. There was so much about my ex that I didn’t know when I married him that came out later and ruined our relationship. With Robby, I knew right up front what to expect. There were no hidden surprises—and there are no guarantees in life. Life can change at the snap of a finger. You can avoid having a really loving relationship with a wonderful person because you’re scared his kidney disease is going to end his life super early or become this constant issue that makes your life really hard. Or you can do your research, learn the facts and move forward.

I had to make my decision before I let Robby meet the kids. I had to be really OK with the kidney disease. I knew that. I told a few people and their reactions were what I expected—Are you sure you want to bring that into your life? And I was surprised how OK I was with saying, “Yes. I am OK.”

Along the way, Robby’s kidney disease has really not been the big dramatic factor in our lives that I think most people think it would be. He has his dialysis handled and we live like a pretty normal, boring family. It does make it hard when we want to travel, and Robby can’t travel overnight on his own. But we don’t have many opportunities to travel any way.

There are days when he has no energy and just sleeps and there are times when he gets really frustrated with the whole thing. And sometimes it wears on me as well. Some days he cries. Some days I cry.  

Which is why Robby has decided to make the move to get a kidney transplant. Here is his announcement: https://theafternoontide.blogspot.com/2018/03/help-robby-richardson-catch-kidney.html?spref=fb

Right now, he is hoping for a live transplant but he’s keeping his option open and just seeing where this whole process takes us.

And while many people keep saying, “Oh that’s great. Congratulations!” It’s not really a “great” thing and it’s hard to explain that to people. It reminds me of when Veronica would have surgery and people would say, “That’s great—so now her foot will be normal?” It’s like some people believe surgery can fix everything and make you “normal.” There are some diseases that will just keep you from ever being "normal" or living a pain free life. 

And Robby has had a hard time dealing with the whole thing because it means he has to depend on another person to have surgery and give up one of their organs to help him. That can really mess with your mind. I know there are times when he feels like maybe it’s just too much to ask and he should just keep with the dialysis and see how long he can live.

We are trying to figure out how in the world we are going to pay for all of these trips to and from the hospital. How much work can we afford to miss? What happens when our insurance quits paying for the anti-rejection meds after 5 years? Who is going to help us with the kids? What happens if the transplant is rejected?

But, we are reasonable people and we know that things will work out the way they are supposed to work out and hopefully this time next year, all of these questions will be past memories and new chapter of our lives will be in full swing.

Sometimes when I’m having trouble figuring out things, I try to imagine that I am someone else and I try to think about the advice I would give that person. If we were someone else, I would say, “You have to go for it. All of those other things will fall into place. But you can’t live forever on dialysis and if you wait too long, you won’t even be eligible for a transplant.”

So, here’s to taking risks, moving forward and letting people help us. And if you end up feeling sorry for us, that’s OK.  Being human can make you do that, too.

The road to Texas is paved with beer, bbq and gas station burritos

I didn’t sleep well last night and I’m up way too early, so I thought I should do something more productive than reading random posts on Facebook and write a blog post.

They tried to act like they wouldn't
 miss each other at camp drop off

My little girl is finally on her way home and she’s flying for the first time—yes, flying on a plane, 30,000 feet in the air-- without her Mama. She’s 13, so I guess it’s time to let her spread her wings a little more but I’ll be glad when she’s on the ground and back in our home.

It’s been a crazy summer this year, full of the usual drama and even fuller of new experiences that make me rethink almost everything I thought was true about myself.

Some good, some bad, but all those experience have made us all grow as a family, in a good way.

Being away from the children for almost four weeks was almost too much for me to handle as a mother.   It was hard hearing those little voices on the other side of the phone and hearing the words, “I miss you” and “I want to come home” and having to just say “I love you” and not jump in the car to go see them.

There were times when I didn’t think I would ever catch my breath or stop feeling so sad. But they are back with me now and I guess we all have grown in our ways from that experience.

Once the kids got home, we all packed up and drove to Texas—and yes “all” includes my dear hubby who is happy to stay parked in Savannah.

Robby has never been to Texas with me before and I wasn’t sure what was going to happen when I gave him front row tickets to a part of my life that he has never seen.  But in true Robby fashion, he embraced the adventure and kept me laughing the entire trip.

Had to introduce Robby to Tractor Supply.

Something happens to me every time I get to Texas. No matter how long I’ve been gone, I seem to slide into this rhythm and relax a little. I get to really relax—my mom does all the shopping, cooking and cleaning and my dad takes the children and keeps them occupied with some of the weirdest babysitting techniques known to man.

My brothers make their way down to Dublin and it’s just like old times. We’re laughing, drinking beer, eating around the table, and telling stories that make my side hurt from laughing.  My kids idolize all of my siblings and can’t get enough of stories from our childhood.

Even though Texas holds some not so good memories, it also holds some of the best memories of my life. 

There are times when I think about moving back—what it would be like to be around my friends and my family instead of the new friends and family I’ve made here in Georgia.

If I’ve learned anything these past years, it’s that I know better than to say “it’s never gonna happen.”

The reason for the trip to Texas was to get Veronica a checkup at the hospital in Dallas with her foot surgeon. When you have something as rare as Arthrogryposis, you find things go better when you have a special doctor for each part of your body affected by the disease.

So, she has a knee guy, a shoe guy and a hand/arm guy. Unfortunately, two of those guys are in Dallas, but it’s worth the trip to get the job fixed right the first time.

Then after four fun filled days in my hometown of Dublin, we returned to the hospital and  dropped off my princess so she could ride a bus to go to summer camp with her other Arthrogryposis buddies at Camp Freedom in the Texas Hill Country for the week.

Love Uncle David and Uncle Luke

She has gone to that camp since she was 6 and she knew almost every kid going—I can’t wait to hear all her stories when she gets back.

And since she’s set for another foot surgery this fall, I have a feeling some of those friendly faces with show up at the hospital to see how she’s doing.

Life is weird. You never know who is going to walk into your life one day and become one of those people that you can’t believe you never met.

I look back one these past several years and wonder how I got to where I am today. I never would have thought I would have the job I have—I said I would never work at a newspaper again.

I never thought I would stay here in Savannah for so long or bring Robby home to Dublin for a visit—I said I would never get married again.

I never thought I would be sitting at home waiting for my little girl to get off a plane by herself and walk herself and her bags to her gate on her own—the doctors told me she would never walk on her own when she was a baby.

My "little" brother Luke

I guess the point is that we never know what tomorrow will bring. It’s easy to say “that will never be me.” But we all learn that it can so easily be you in the blink of an eye.

It takes mere seconds to meet someone that will change your life. It takes just a few more to make friendships and memories to last a lifetime.

But it also takes a lot of work and patience to make those relationships really good and even more to make them last.

I guess the big thing I’ve learned this summer, is that healthy relationships are worth the time and effort in the long run. Everyone gets busy and tired, but some people are still really good at making sure they stay in touch and take the time to make relationships work.

I realized I need to work harder on maintaining my old relationships in Texas. I’ve avoided them because I get so homesick sometimes and I don’t want to admit I miss a crappy little place in the middle of nowhere that serves the best damn gas station burritos in the world.

I realize I’ve been stuck in between Texas and Georgia for a while now—both pulling me in different directions. I’ll never leave Savannah; I’ll never move back to Texas. Why say never? Why not find something in between? Why not make more of an effort to have both?

It’s easier to watch life pass by on Facebook than to make the effort to get up, get out and embrace the people and places that make you happy. It’s hard to get passed the hurt and let people love you and take care of you—it’s hard but it’s not impossible.

Starting over doesn’t mean I have to close the door on the past. Starting over means I get to pick and choose who I want to come along on my second chance at happiness. It means I get decide and I get erase the dreaded “never” with “maybe” or “yes!”

Who wants a boring life?

Okay, so I only have five more days to go until I get my children back home with me. It's like I have a clock in  my head and I can hear the click, click, click of the seconds slowly passing by.

I got to have them for two nights for the 4^th of July. I just couldn’t soak enough in. Dropping them back off at their dad’s was harder than I thought it would be and I didn't think I would ever be able to catch my breath again.

It’s been a series of trying to keep busy long enough to take my mind off things so I can breathe for a minute without feeling like I’m going to start crying again. Just breathing is hard sometimes. It's like a huge piece of me is missing and I feel panicked. 

It’s not that I just miss them—there is a lot of other emotions and thoughts going through my head that make me worry.

But, during my time with children on July 4^th we had some awesome moments when I got the confirmation I needed to know that my children are going to be okay.

Jude took charge of setting up the canopy Robby bought. He helped carry heavy bags from the car without complaining too much and he gave me enough hugs to last a week. 

Veronica told me something I didn’t know could come from a teen girl’s mouth—she’s happy with herself just the way she is. She is planning to go to camp in a few weeks—it’s a camp just for children with Arthrogryposis, which is what she has.

She loves that camp because she gets to be herself while she is there. No one asks why she wears leg braces or what happened to her. They are just kids for a week getting to have a normal camp experience.

At the end of camp, there is a ceremony where the campers write their name on the camp sign and they get to make a little speech if they want. Veronica told me she already had her speech ready and she wanted me to hear it. So, while I carried her on my back to take her back to the car after fireworks, she recited her planned speech in my ear.

“People always say I have a good attitude and they don’t understand why I’m not mad about my legs, but I’m happy with being different. I like being different. I don’t want to be any other way.”

I was stunned. Most people go their entire life and never have that sense of clarity about their self-image, self-worth or self-esteem. But at 13 years old, she gets it.

It seems simple when she says it—“I’m glad I’m different. I don’t want to be like everyone else because that would be boring.”

Yes, it would be boring and sometimes I have to remind myself that while I may think I would like to have a boring life without all the drama, I know that a life worth living has to have the lows so you can truly cherish the highs.

This isn’t so much a low point for me right now—it’s just a place I had to be in order to truly treasure those little moments and hear what is going on around me. 

While it may sound creepy, I watched my children sleep the morning before I to dropped them off again. I watched their chests rise and lower with each breath and I felt comfort in their peaceful faces. I haven't had a moment like that in a long time--a moment where everything just stopped and got quiet and I took in the reality of the miracle of their lives and mine. 

And yes, I’m really mad and sad sometimes, but I  thank God for giving me those little moments of clarity to see what truly matters and to never take this crazy life  for granted. Because crazy can be good--it's not boring, and as my daughter says, who wants to be boring like everyone else?

I'm not wanted

It’s been a while since I wrote a blog. I am swamped with life and it seems to be catching up with me a little more each day. But I guess that is the way it goes for a newly remarried mother of two who is also a full-time graduate student and freelance writer—did I mention it’s summertime and my school-teacher-husband and both kids are still out of school?

I also slipped away to Texas for a week to take Veronica to Camp Just Like Me. The camp is sponsored by Texas Scottish Rite Hospital for Children in Dallas and it is just for children and teens with Arthrogryposis. Yes, it's also the same camp where she fell and broke both legs last year. But she loves that camp and wanted to go back. I agreed that she needed to go back, too. That camp seems to bring out the very best in her and it’s always a life-changing event.

But this year was different than previous years. I had this weird feeling from the moment we got there that things were “off.” After the first day, I thought the difference was the change in ownership of the camp.

The family that used to own the camp is no longer there. It left a huge hole that was obvious from the moment we walked in the front door of the lodge—no big hugs from Scott and his family and no dogs running around outside. And not only were they not there, but there was a new group of camp counselors and a new group of staff from Texas Scottish Rite Hospital.

By day two of the camp, I began to realize that the change in leadership and counselors didn’t seem to make that much difference. We did pretty much the same activities. Everything was still fun. All the kids and parents had smiles on their faces. I thought maybe I was just tired, and for the first time ever, I was homesick. I finally had someone at home who missed me, and I could tell he missed me. I just wanted to be at home with my husband.

By day three I finally realized why camp didn’t feel right. I realized that there was no reason for me to be there this year. This was the first year when I didn’t need to dress Veronica. She didn’t need me to push her wheelchair. She didn’t need me to bathe her or fix her hair. Quite frankly, she made it very clear that she didn’t want me there when she asked me to not sit with her at dinner.

At first I was hurt. I mean, I spent all this money for travel and I took an entire week away from home and I had to use every free minute we had at camp to finish homework and keep up with my classes. I thought this trip would bring us closer, but I never felt more useless as a mother as I did sitting alone in the cabin while she was playing at the pool with her camp friends.

I’ve noticed that life has a way of slapping me in the face with reality just when I need it. On day four of camp, I went for a run before breakfast. I came back to the cabin to take a shower. The cabins have a large bathroom with 2 toilet stalls and 2 showers that face each other so that you are facing the toilet stall when you step out of the shower.

As I finished my shower, I pulled open the shower curtain to reach for my towel and dry off. I noticed a typical scene in the bathroom—4 feet showed at the bottom of the stall. At camp, it is rare to ever see the children in the bathroom stall without an adult helping them. Most of the children cannot use their arms very well, and they need help pulling their pants up and down or wiping themselves—some of them cannot get on and off the toilet without assistance. When you're a toddler, it's not that big of deal. But when you are a maturing young lady or man, it's uncomfortable at best.

Instead of feeling sorry for myself, I realized that I should be down on my hands and knees thanking God for helping my little girl to get to a place in her life when she doesn’t need me to do those things for her any more. Last year, I had to pick her up and place her on the toilet and help her with her pants. A lot of times I had to help her wipe herself, too. There is no privacy for these children. Nothing is sacred when you are disabled—you don’t get the privilege to say, “I want to go to the bathroom by myself today” or “I don’t need help putting on my panties.” Puberty makes things even more complicated--especially for girls.

I spent the rest of the day keeping a lot of distance between Veronica and me, and I felt great about it. And if I wasn’t smiling, it was because I was too emotional. I cried on and off all day long, and I didn’t try to hide it from the other parents this time. No one asked me why I was crying—most of the parents cry at some point during the camp because it is such an emotional feeling to see your child “acting like a normal kid.” And for some of us, this camp is the only place we ever get to see that.

On the flight back home to Savannah, Veronica asked me if we were going back to camp next year. “Probably not, sweetie,” I said. “What? Why?” she asked. I leaned down to her face and whispered, “Because you don’t need me to go to camp with you anymore.”

She didn’t seem too upset by this. I know she doesn’t want me to go to camp with her anymore either and she can’t go to Camp Just Like Me by herself until she is 13 years old. “How about we find a camp for you next year where you can go by yourself and then you can go back to Camp Just Like Me the next year?” I asked. The thought of sending her to a “normal” camp made my stomach churn, but I know it is the next step in her journey to become independent.

She shook her head and thought about what I said. “I guess so, but where could I go?”

And quite honestly, I didn’t have an answer to that. I don’t know what is going to happen each year—I never know what new obstacle will be thrown at Veronica. I know that she will never be “normal” and I’m okay with that. But for the first time in my life, I know that she is going to be okay. She is going to be able to live in the “real world” and survive without me. Life is always going to be hard for her, but I know she can handle it.

She will always be that sweet little baby who smiled and played despite the long leg casts and painful therapy. She will always be that sweet little girl who stood in front of her first grade class and said, “Hi, I’m Veronica and I have arthrogryposis.” But most importantly, she will always be that young lady who got up one morning at camp and dressed herself while I was in the shower and said, “Mom, can you please stay in the cabin today?”

And trust me; staying in the cabin alone is just fine with me now. I couldn’t be happier.

Arthrogryposis Awareness Day

Today is Arthrogryposis Awareness Day. If you don’t know someone with Arthrogryposis, then you probably have no idea what I am talking about.

My daughter Veronica was born with Arthrogryosis. It’s a congenital condition that causes the joints not to form correctly. Considering the fact that the body has over 300 joints, there are many variations of this disease.

Despite the fact that Veronica has a hard time walking and bending her knees, her case is actually quite mild compare to most of the other children we have met with the disease. When Veronica was born, she had clubbed feet, her left arm didn’t move, her hands her pulled toward her inner forearms, her head was cocked to the left side, her knees didn’t bend, and her hips were dislocated. I was told she would never walk.

But after the hell I had been through with trying to diagnose her, walking was the least of my concerns. I just wanted her to live.

Veronica scuba diving

And boy has she lived. There is something very unique about all the Arthrogryposis children I have met at different children’s hospitals and Camp Just Like Me. They seem smarter than most children and they have an amazing sense of humor. And it’s not just my motherly pride talking--I’ve had doctors tell me that they have observed the same mannerisms.  Their smiles are inspiring and they grow up to do amazing things as adults.

I have been extremely lucky with Veronica. When she was first born, we lived close to Seattle where they have one of the few Arthorogryposis clinics for children. Veronica was seen by their doctors when she was 5 days old and I believe that is the reason she can walk and use her arms today.

Veronica at Camp Just Like Me

We are also lucky that we have met other children and adults with Arthrogryosis. Some people live their entire lives without meeting anyone just like them. It is a relatively rare disease that occurs in about 1 in every 3,000 births. I had never heard about it until the day the doctor told me my baby had it and even the doctor couldn’t pronounce it correctly.

I have also been very lucky in the fact that I had insurance when Veronica needed it. There was about 8 months after my ex-husband left that I couldn’t get insurance for her and my ex-husband refused to provide it. You see, Arthrogryposis is one of those pre-existing conditions that private insurance companies refuse to cover--that is why I support the Affordable Care Act. No one should ever be stuck without health insurance like I was. Not being able to take care of your child’s health is a nightmare, and people need to understand that anyone can end up losing their health insurance at any time.

But I think everything happens in life for a reason. It’s hard to raise a special needs child but compared to most parents with special children, I have it pretty easy. Veronica has never been on the brink of death. She is very intelligent. She has a lot of friends and she is very social. Sure we have spent a lot of time in the hospital and it’s frustrating to know that there are things in life that she will never be able to do like run or wear sandals, but I can live with that.

I do know that I find myself in situations where I get to be the person in the room who has advice for parents like me. I get to take all the knowledge I have accumulated about doctors, hospitals, physical therapy, dressing devices, leg braces, special tennis shoes, wheelchairs, and health insurance and share that knowledge with people who need it.

A few days ago, I got a call from a woman who needed help writing a thank you letter to the newspaper. Her son was diagnosed with a rare brain tumor and he didn’t have health insurance because he chose to become a youth minister and the job didn’t come with benefits and he couldn’t afford private insurance. The community has rallied behind her son to help raise money for his care which must be paid prior to his treatment, and she wanted to write a letter to thank everyone.

I would have thought that she just needed my help writing the letter, but she really needed something else. She needed another mother who could understand what it is like to want to help your child, but finances and health insurance are holding you down. I told her about how I lost my health insurance when my former husband left the military and took a new job without adding the children to his new insurance plan and how humiliating it was to tell hospitals that I didn’t have insurance for my children. I tried to get a private plan that would cover Veronica, but there aren’t any. I couldn’t get her on Medicaid, because I wasn’t legally separated and my former husband made too much money to qualify and he refused to sign my papers for separation.

I told her something that I wish someone would have told me, “Never feel ashamed for not having the money you need to take care of your child. We all do our best, but sometimes things become too much and we fall short. These moments make us stronger and you must hold your head high.”

I also gave her some advice about how to get around certain hospitals with key phrases like “what is your quick pay charge?” I also admitted to her that I still didn’t have health insurance for myself. “I can’t afford it right now and I don’t have a full-time job that gives health benefits.” She looked at me and said, “You need to fix that as soon as you can so you don’t end up like me.”

As I drove home, I called Robby. “I need you to add me to your health insurance plan.” I realized how lucky I am to have that option now.

No matter what your political views are, we all have to agree that the health insurance system in our country needs work. We have the best medical care in the world and it is a shame not to give access to the people who need it the most. Should it be free? Of course not. But it should at least be accessible when you need it—especially when your life depends on it.