Balance

I am the oldest of four children, three girls and a boy.  My siblings and my parents live in Kentucky, so I don’t get to see them as often as I’d like.  Yet, we are all extremely close, particularly my sisters and I.  We come from very strong stock, and my sisters are amazing women.  They both work and have young children.  I think they let me go through parenthood first to see if I’d survive before having kids of their own. My youngest sister Stacey, works from home for an insurance company, dealing with the aftermath of catastrophic weather. She has a 6 year old son Garrett, who is a human tornado.  There’s no other word for him.  He is mass in constant motion.  Inquisitive, determined, inquisitive, loving, and did I mention inquisitive?  Lesser humans would buckle under the pressure of such a ball of energy, but we’re talking about my sister.  Did I mention she’s amazing?

For the moment, Stacey is, in essence, a single parent.  Her husband, a former Marine, is working as a government contractor fulfilling a year long assignment in Afghanistan.  He’s been home for just a few days in the interim.  She has become both mom and dad, good cop and bad cop, lawn mower, dish washer, homework checker, house repairman, cook, laundress, and all the other things that go into running a home and family. 

With the recent hurricane, she found herself working crazy hours to deal with all the claims as a result of the storm.  Recently, she made the comment that she loves her job, but could do without another storm this season, as she hates being torn between her child and her job.  It got me thinking…what is balance, and how do we find it?

We’ve convinced ourselves as women that we can have it all.  We can indeed, as long as you’re realistic in your definition of “it all”.  There will be moments that you’ll miss, but there will be bills that are paid.  It’s a trade-off.  There will also be moments that you get to treasure, because perhaps you passed up that big promotion that involved extensive travel.  It all comes down to finding a balance, and more importantly, being okay with it.  I work full time, my children know without a doubt that I love them.  There are football games that I miss after school, but my son knows the minute he gets in the car when I pick him up, that I will want to know every detail, every play, even if they lost.  And I’d like to know the name of the cute cheerleader making goo-goo eyes at him. There are times I get to see the last few minutes of the game, and I love those moments, even if he’s not on the field.  I try to make one on one time for each of my kids each week, even if it’s just sitting on the couch catching up on school events or a silly TV show.  It doesn’t always happen, and I’m okay with that.  I know that if the schedules are to crazy, we have next week to make it up.

My sister worries about not being there for everything.  With her husband gone, there are going to be times that she’s not.  But I see my nephew look at her with adoration, or stop what he’s doing to just run to her and claim his hugs, and I know that he feels safe in her love.  I know she cries sometimes when she’s frustrated or tired, but I know she also lets Garrett know it’s okay to be sad or upset.   I see how she juggles 25 spinning plates to make sure she’s at his t-ball games, or lets him take her to dinner with a gift card from Daddy, and I know that when he’s older, he’ll understand what a strong woman looks like.  She looks like my sister.  She looks like all of us striving for the best, but knowing sometimes that all we have is “our” best.  We need to trust that’s enough.

Karen Cluxton lives in Hatfield, PA, and has three teenagers – Halle 16, Owen 14, and Grace 13. Between shuttling kids to soccer, baseball and physical therapy, she trains in Mixed Martial Arts.

"Making a Difference" with Guest Contributor Karen

As some of you may have read, my youngest daughter Grace had major surgery last Friday at DuPont Hospital for Children in Wilmington, Delaware.  The surgery was a huge success, and her body is now doing things that it’s never been able to do before – like giving me a two handed hug for the first time…ever.  It was a stressful week with emotional ups and downs, but this child is a fighter, and fight she did.

Across the street from the hospital was a Ronald McDonald House.  While I didn’t need to stay there, as the hospital allowed me to stay in the room with her all week, it was nice to know that a facility was available for family members.  However, part of the Ronald McDonald House was inside the hospital, in the form of a Family Resource Center directly across the hall from Grace’s unit.  This housed private rooms where a parent could grab a few hours of uninterrupted sleep, private showers, a kitchen area with coffee, tea and snacks available 24 hours a day, as well as several computers with internet access and a resource library.  There was a family room style set up with TV’s, video games, and laundry facilities complete with laundry detergent and other supplies, all free of charge.

The goal of this particular blog entry is to encourage you to consider the Ronald McDonald House if you are looking for a place to make charitable donations.  If you have a Boy Scout or Girl Scout troop needing a service project, a classroom looking to make a difference, or anything along those lines, I’d like to give you some suggestions that are easy, but make a world of difference.

Upon entering the Resource Center to grab yet another cup of coffee on Valentine’s Day, I noticed the counters were lined with beautifully decorated large white lunch bags.  Handwritten on the back was “Lovingly prepared for you by the second grade class at St. Joseph’s School.”  Unbelievably sweet – each bag was labeled “Meal to Go” and filled with a bottle of water, a container of Easy Mac, an applesauce, and a pudding cup.  Perfect for the middle of the night when my daughter was finally asleep, and I needed simple comfort food. 🙂 This would be a great project for kids. 

Another idea would be a collection of bath essentials.  Unfortunately the towels provided were small, thin hospital towels.  I was lucky in that I knew I’d be staying and packed my own big, fluffy towel.  But I felt bad for the 6’3″, 250 lb dad who looked at the small square of cloth and asked for several more (which he was given with a laugh!)  Some ideas for a service project would be fluffy towels, travel size shampoo, conditioner, body wash, shaving cream, razors and deodorant.  Toothpaste and toothbrushes would be useful too.  For those of us who know our children will be staying overnight, it’s not a huge issue.  But for kids that come through the emergency room and stay for several days on the floor, parents are often times caught off guard.  Having something as simple as shampoo and conditioner would go far in helping a parent by giving them some of the basic comforts of home.

Slipper socks!  Always a great idea for kids and parents. 🙂 Not to mention video games, new or used.  If you’re like me, your child has gone through several dozen games, and once finished the thrill is gone.  Donate them!  Siblings can play them in the resource room, or patients can play them in their rooms.

And lastly, hug a nurse, doctor or therapist.  These folks have a huge responsibility with our kids when they’re admitted.  I’ve seen therapists cry at a child’s progress, nurses stay after their shift to rock a child whose parents weren’t there, and doctors take off the white coat and put on the friend sweater to sit and take the time to comfort a parent.  I’m humbled at the generosity of spirit these professionals have, and grateful that my daughter was a recipient of such gifts.

Be well, hug your kids, and be creative in ways to teach them to help others.  To those that receive your gifts, it means more than you will ever know. 🙂

Independence for Grace Guest Post by Karen Cluxton

So, I’m writing again about Grace, since I’m pretty much consumed by what’s coming up this week for her. Friday she’ll be having major surgery at DuPont Hospital for Children to address several issues. Her adductor muscles (located at the inner thigh) are so tight due to her Cerebral Palsy, that they have rotated her hips to the point that both have partially dislocated. The surgery will address the adductor muscles themselves, the dislocation of the hips, and the tone issue. She will have both femurs broken near the hip, with the ball and socket of the hip joints shaved so they fit as they should, and then they will all be pinned back together on both sides. At the same time, they’ll lengthen the adductor muscles in order to in order to allow her more range of motion. They will also be placing a Baclofen pump in her abdomen with a catheter attached to her spine, so the medication can be delivered directly to where it needs to be. She has been taking Baclofen orally for two years, and its purpose is to reduce the tone in her muscles which make them very tight. The pump will greatly reduce the amount of medication she takes (from 1.7 milligrams to .4 micrograms) per day. This will relieve the lethargy she experiences as a side effect of the medication. She’ll be hospitalized for five days, and home from school for six weeks.

She is aware that she is having surgery, and I’ve given her just enough information to satisfy her curiosity, considering the fact that she obsesses about things that make her nervous. This sets off a whole new set of medical issues that are not conducive to the surgery itself. What I’ve told her is that this surgery will make it easier to move her legs, reduce the pain she sometimes experiences in her hips, and the best part…she won’t have to take her medicine anymore. She seems okay with that. For now…

What I DON’T shield her from however, is the valuable experience of taking charge of her own medical appointments, to the extent that she is able. At 13, and remarkably verbal in the last few years, she has her own questions to be answered, and a keen understanding of just what it is she deals with medically. She may not understand the causes or the implications, but she has been empowered to voice her opinion and concerns when it comes to her treatment. It very often surprises the medical staff, particularly if it’s the first time they’ve met her. For instance, she’ll meet a new doctor, and the majority of them begin the appointment by asking me questions about Grace. She has become very comfortable saying “My name is Grace, and I have CP. It means my arms and legs don’t work like yours, but I can use my left hand more than my right. “ The doctor at this point, generally gives me a wide eyed gaze, and more often than not begins asking Grace questions without missing a beat. She corrects the nurses all the time. “No Miss Jackie, you’re not giving my arm a hug, you’re taking my blood pressure. So, what is it today?”

This past Friday, she had a pre-op appointment at DuPont, and asked the nurse “So, what exactly is going to happen when I come in for surgery?” The nurse explained to her “We’re going to give you some giggle juice, and then you’ll go to sleep. There will be no ouchies while you’re awake, but after you’re asleep we’re going to take something that looks like a tiny, tiny straw, and put your medicine in your arm through the straw.” Grace sat back and laughed, and said, “You mean the catheter for my IV? Just make sure you put it in my right arm, since I need my left arm to write.” That’s my girl. J

So much of what I (and her team of therapists, teachers, aids and doctors) do for Grace is to help her become empowered and independent. Her medical appointments should be no different. Unfortunately, there will come a time when I can’t accompany her to her appointments, or be able to help her understand her care plan. By allowing her to navigate that journey now, while I’m still around to help, my hope is that she continues to be pro-active in her treatment throughout her life. I think often times this aspect of raising a special needs child is not given the importance that other areas of fostering independence are, but I truly believe it’s as vital as getting a child into appropriate therapies.

My advice to anyone raising a special needs child, is to let them take ownership of what they are capable of dealing with. Let your physician know that your child may have questions for him that your child would like to ask all by themself. If communication is an issue, use whatever means in whatever medium is available to you. If your child signs, let them actively ask in sign while you translate. If they use a communication device, pre-program the questions into the device so your child is ready to fire away at will. Make it a positive experience that leaves your child feeling validated as a patient and a person. You’ll get it wrong, and you’ll get it right. But either way, you won’t regret the life lessons.