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!”

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.

God, you knew this would make me mad at you



Veronica getting ready for ropes course

Things have changed drastically since my last post. While in Texas, I took my daughter to Peaceable Kingdom Retreat for Children (if you have money then give it to this place) for Camp Just Like Me (also needs money). This a camp sponsored by Texas Scottish Rite Hospital for Children in Dallas, TX  and is for children with Arthrogryposis (if you have more extra money then give it to this place, too).

To say that Veronica and I love this place is a total understatement. This was our third year as campers and it has changed our lives.

For one week, we get to forget the outside world. Veronica gets a chance to be the “cool kid.” And I get a chance to just be a regular mom with a regular kid. Veronica was able to SCUBA, do a high swing and zip line, watch movies in the private theater, play unlimited air hockey and arcade games, swim, practice her archery, and make friends that will undoubtedly last a lifetime.

The last night of camp Veronica fell on stage during the talent show and broke her left knee and fractured her right leg. I cannot even begin to describe this nightmare.

Veronica getting ready for archery

I sat in the audience and watched the entire scene unfold. When you have a child that is prone to bad falls, you quickly learn that she needs a lot of open space to walk. I guess everyone got caught up in the fun of watching these children shine on stage and forgot to clear the stage.

I knew the set-up on stage was a mistake from the start. I got that feeling in the pit of my stomach that things were getting out of control too quickly. I watched Veronica and her best friend walk too closely to each other and then I did something—I lowered my video camera and watched the horror unfold in slow motion.

The girls fell and Veronica’s legs got pinned underneath her. She began screaming, “Oh my Gosh, oh my gosh!” I don’t remember much after that. I ran onstage and grabbed my little girl and I could tell her little legs were twisted in an unusual shape.

I held her close to my chest and whispered in her ear, “it’s okay baby, Mommy’s got you.” I looked over her shoulder and mouthed the words, “her leg is broken” to the nurse—she nodded in confirmation.

Veronica's SCUBA lesson

All of the sudden I realized that everything was very quiet and everyone was looking at us. The young camp counselors seemed to be in shock. But the parents in the room seemed to know exactly what was going on—this scene was all too familiar to them. We all know what it is like to watch your child fall down and break an arm or a leg or both—their joints are static and it leaves them vulnerable to these types of injuries.

I have been told that I have an amazing ability to appear to be a very composed and rational person despite the fact that my world is constantly throwing me curveballs. For some reason, I was able to keep my composure again despite the anxiety. But for the first time in a long time I wanted to hold my child to my chest and scream at the top of my lungs.

Veronica's first catch

At that moment I hated God. If he had been standing in front of me I would have told him to “fuck off.” I would have asked him, “Is this some sort of sick joke?  Has this child not suffered enough for you?”

But I kept my wits and held in the tears and waited for our ride to yet another emergency room. The camp is in a rural area of Texas, so I had time to calm myself on the 30 minute ride to the ER. 

I kept thinking, “Why is this happening? What will I say to Veronica?”

While Veronica and I were hanging out in the back of the ER waiting to see the doctor, I felt it was time to address the reality of the situation.

“Honey, I’m not sure if your leg is broken, but you have obviously done something bad to your knee.”

She began to cry again. “Mommy, why does bad stuff always happen to me?”

I held back the tears and took a deep breath, “I don’t know, sweetie. But I do know that everything happens for a reason so let’s try to look at this situation and see what God is trying to tell us.”

We sat silent for a moment and then I said, “Sweetheart, you want to know what I think? I think it’s time that you and I come to terms with the fact that you are disabled and that falling and hurting yourself is just going to be a fact of life. But you can’t let this destroy you—you have to find the strength inside yourself to overcome this pain and frustration and become a bright light in a dark world.”

Dinner in the lodge

Veronica sat quietly in her wheelchair for a few moments—she seemed to be soaking in my words. “I guess, but I’m just so tired of all of this. I just want to be normal.”

“I know you do sweetie, but you are not. You are special for a reason and you have to keep on living so you can find out what your purpose is.”

She nodded. “Don’t worry, Mom. Even if I never walk again, I will still be okay because my friends from camp will always like me just the way I am.”

I held in my tears until I got back to Savannah. Robby picked us up at the airport. After he hugged the kids, he turned and looked me in the eyes and hugged me. I cried like a baby. It felt good to let it all out.  He whispered in my ear, “it’s okay baby, I got you.”

Veronica having fun at camp

I’ve learned something from this tragedy—it’s okay to be mad at God. He knows that I am mad at him right now and that I don’t understand why my sweet baby has to have 2 broken legs after she has finally recovered from a very intense foot surgery.

He also knows that one day all of this drama will make sense to me. But until then, I will be mad at the world and he will just have to be understanding of me for a change.