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.

I quit for a good reason

Today was Martin Luther King, Jr. Day. Living in Savannah, GA, this day is definitely observed and celebrated. Growing up in Dublin, TX, we finally got a day off of school when I went to Jr. High School, but we got the day off for Stock Show Day, not MLK, Jr.

 I’m glad my children are growing up in a place where this holiday matters and they get at least 2 full weeks of lessons in school teaching them the importance of Dr. King and his journey. They have learned the importance of sacrificing a bit of their own happiness to ensure others have the freedoms and opportunities in life that they deserve. While we didn’t do anything significant to celebrate this day, something did happen that will make this very special to me.

 Veronica sat in her bedroom this afternoon and took off her shoes, leg braces, and socks all by herself for the first time ever today. For most people, taking off shoes and socks is a mundane event that happens several times each day. But for an 11-year old girl with a disability, taking off socks and shoes on her own is quite a challenge.

But I have to be honest—Veronica should have been doing this on her own long ago. Before her last foot surgery, she was taking off her tennis shoes and one of her leg braces on her own. But the surgery slowed her down and I have been doing this task on command ever since.

To sum up, I have enabled her to remain disabled and completely dependent on me. Why? I have no idea except to say that I wasn’t strong enough to do the right thing.

Robby and I were talking this morning before I left his house. We always spend our weekends together either at my house or his and saying goodbye gets more painful with each week. This morning we were doing our usual pep-talk that gets us through another week apart.

We realized that we have a little over 4 months until we move in together and begin our new lives as a family.  To me, 4 months is not a lot of time. I began to flip through the tasks in my mind that I wanted to complete before we move in together—making sure my children are independent was #1 on the list.

I realized that my original plan with going to graduate school had been that I would receive small alimony checks for 2 years. During that 2 years, I would try to live off of that money while I earned  my master’s degree, started my new career, and became completely self-reliant financially. During this time, I would also help my children to get used to the idea that I was not going to be around every day after school to cook their meals and help them with homework.

The big idea in my head was to get Veronica completely independent before I joined the workforce. Two years seems like a long time in the beginning. Now my two years has become 4 months and I still haven’t enabled Veronica to figure out how to get her shoes on and off on her own—I began to panic a bit when Robby held up 4 fingers and said, “We only have 4 more months until we are together all of the time.”

 

I let her master archery,
but not shoes?





During the drive home, I zoned out in my head and thought about what I needed to do to get Veronica more independent. I realized that she wants to be independent, but I wasn’t helping her. She wakes up in the morning and gets dressed on her own—something she has only done for the past 3 months. Once she puts on her socks, she screams, “Mom! I need my shoes on now!”

I don’t miss a beat in dropping everything to put her shoes on her feet.

At the end of the day, she enjoys taking a long shower. Again, she has only starting bathing on her own over the last few months. But before she can undress, she sits on the toilet and screams, “Mom! I need my shoes off!”

Again, I drop everything to squat down and pull off her tennis shoes, leg braces, and sweaty socks. It’s tiring and I have been frustrated with the task—never sure when it would ever end.

So today, I handed her the dressing stick and reacher and told her that she needed to try to get her shoes and socks off by herself. This suggestion was met with a tantrum. “What? You know I can’t do that by myself!” she screamed.

Veronica's tools--reacher, dressing stick, and sock tool

I calmly said, “I need to put your brother’s clothes away. Why don’t you see what you can do while I do that and then I will come back and help you.” I walked out of the room while she continued to scream and throw her fit.

I stayed in Jude’s room and listened to her cry and shout, “Mom, please come help me! I can’t do this!” I hung up Jude’s clothes in his closet while she continued with, “Mommy? Mommy? Please help me! I need you, Mommy!”



If you have a disabled child, then perhaps you have been through this tug-of-war. The only thing worse than having to ignore your child’s pleas for help, is knowing that you are the reason that she cannot do most normal tasks on her own. On my drive home today, I realized that I was the reason Veronica wasn’t putting on and taking off her own shoes. I can blame it on her disability, but the truth is obvious—she is capable of so much more than I allow her to do.

Gearing up for zip line at camp--
I let her fall from sky but I didn't make
her take off her own shoes?

As tears streamed down my face in Jude’s bedroom, Veronica’s pleas began again. I heard her beating her dressing stick on the wall in frustration. I heard her banging her head on her metal bed frame. I heard her gasp for air as she cried in frustration—but mostly I heard fear.

After her father left several years ago, the realization that her mother might one day leave her became a fear in the back of Veronica’s mind. What would she do if she didn’t have me around to dress her and bathe her?

Not forcing this child to man-up and conquer this fear was one of the worst mistakes I have ever made as a mother. I kept hearing the voice of a friend who had to overcome her own disabilities—“She is mad at you now, but one day she will thank you.”

Veronica’s screams began to slowly subside and I heard her begin to try to take off her shoes. I heard a shoe hit the floor and she let out a deep breath. Then I heard the steady rip of her Velcro straps on her braces. I heard her gasping for air and pushing with all of her might.

She can scuba, so shoes should be no problem

I finally walked down the hall to take a peek at her. She was sitting on her bed with no shoes or leg braces on. She was pulling off her socks with her dressing stick and refusing to recognize my presence at her door.

She can dance in public,
so shoes should be cake

After the last sock was off, she looked up at me and said, “There, that wasn’t so hard after all.” We both laughed through our tears.

She stood up on her shaking weak ankles and hugged me tight. She buried her head in my chest and wrapped her thin arms around my waist. “I’m sorry, Mommy. I love you.”

I kissed the top of her head and said, “It’s okay, baby. I love you, too. And I’ve never been more proud of you then I am right now.”

I told her that she is one of the smartest people I know that she is capable of so much, but that she will never know what she can do if she never tries. “And trying is not the same as giving up quickly and making me finish the hard work for you.”

She seemed to get it and she walked down the hall to the bathroom to take her shower on her own. I left her wheelchair in the bathroom and I told her that she would have to get out of the shower on her own and get herself dressed. She groaned a little as I walked out of the bathroom.

She got dressed on her own and even tried to put on her shoes by herself. She said her goal is to be totally independent by summer. I think she will be independent before summer.

I let her hit the slopes but not attempt a shoe change? Why?

And a part of me is happy but a larger part of me is struggling to figure out what my role will be if I’m not the person she is dependent upon for everything.  Taking care of Veronica and knowing that her shoes are on her feet correctly gives me great peace even though I know it is wrong.

I feel like one of those mothers who is overfeeding her fat child because food makes her baby happy and hunger makes her cry. But it’s wrong. It’s wrong to make your child disabled because you can’t stand to hear her cry. I admit I was wrong. I was addicted to helping my daughter. I didn’t know how to stop. I didn’t want to hear her cry. I didn’t want to admit that my time as enabler needed to end. I didn’t want to feel unneeded.

But my job is not to raise a child—it is to raise a woman. I want Veronica to be a strong and independent woman who can go and do whatever she wants whenever she wants and not be tied to me. And today I made the decision to let her go.

It hurts a little to know that I have spent the past 11 years doing everything for my little girl and now that must end. I have no doubt that Veronica will know exactly what to do with her new-found independence. I just pray that I can continue to be a good mom and enable my child to grow up.

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.