Nurturing Your Roots

By: Shannon Loftus

I have MS. While I am many things, a wife, a stay-at-home, work-at-home, home-schooling mom, it is that last word that reigns supreme over me. I am a mom. I am a mom who has MS. So, this month, I want to share with you how I made it over the hurdle of educating my son about my illness, and my personal thoughts on educating our children, particularly our little ones, when it comes to our MS.

I was diagnosed, finally, when my little guy was 3. I am of the opinion that my health issues are mine, and mine alone. I believe that there is no reason to burden my little guy with my dealings with MS (or the epilepsy, or the spinal stenosis). So, I had made the choice to not tell him until he was old enough to understand what it all meant. I never hid it, but I never went out of my way to chat with him about it. He is my son, not my “bestie.” He looks to me for leadership, and he does not want to be my sounding board. He wants the strength of a parent, not the venting-session of a buddy.

I had had this discussion with a member of our local support group, who always seemed to want to know when and if I had told my son. I always said no, not yet. He came to group with me, and still does, but pretty much spends his time in the venue’s play area. In 2012, at the age of 7, I attended a group meeting and was deep in discussion with another member. Out of the corner of my eye, I saw this person (the one interested in my telling of MS to my son), talking to my boy, and giving him a coloring book. I thought nothing of it. On the way home, he starts asking me; Mommy, are you going to die? What is MS? Why do you have it? Will I get it? I asked him why he was so upset (he was crying by this time). Then he shows me the coloring book. It is a coloring book/activity book/educational book, for children, put out by another organization, and while a fine product, well-written and engaging, I did not think it the right fit for my family, particularly given my son’s age, so I had foregone its use as an “educational tool” or “discussion starter.” I was mortified that another adult had taken it upon themselves to introduce my son to my illness, and in such an impersonal manner (yes, I addressed it with that person).

So, my cresting of the “discussion” hurdle, when it came to educating my son about my MS, was not some heroic event, but rather more of a giant face plant, courtesy of another person’s interference. My son, husband and I made it through what became a mud-run obstacle course of questions and answers, crying, full of hugs, and a little guy being scared his momma was gonna die. He is now just shy of 10, and he does not know all the details of MS. That will come with, according to his interest in learning about it, and ability to understand the science behind. Right now, he just knows mommy is ok; mommy is sick and some days her legs don’t work right, or her eyes hurt, or she is really tired and hurting, and she is definitely forgetful, and sometimes she needs her cane, or even her pirate eye patch. With that latter one, I can still get him to wear one, and it helps to take the edge off of his nerves and we laugh ourselves silly.

You see, I had read the children’s book before, and I knew it was inappropriate for my son, at that age, and what my husband and I were then forced to deal with went beyond MS education or simple family discussion. It became crisis management. Not the desired “teaching moment.” I find tools like that to be a one-size-fits-all approach, and let’s face it…how many times has the one-size ever fit you? It is always too big, too small, too short, too long, and never just right.

Children are like trees to me…they need strong roots to support them as they grow. So, teaching your child about your MS, really needs to be like watering that tree. It needs to be done with care. You don’t just turn a hose on a tree and walk away. You can drown it. Or your hose might be defective and your tree thirsts to death. Our children are the same. You can overwhelm them with too much information that they cannot adequately process in terms of their emotional maturity. You can underwhelm just as easily and then they may think you are keeping something from them (like the water for the thirsty tree).

I still sometimes stress out about my MS and discussing it with my boy. He still has questions. I stress out about not being the physically active mom that I dreamed of being. I look at other moms and dads playing hard with their kids in parks and I am not capable of that. I relayed to my husband once about how much it hurt that I couldn’t be a normal mom of a young boy. He looked at me, and he said, “But you are. You are his normal. You are what he knows, because you are all he has ever known as a mom.”

Those words were priceless. He was right. So, I now relay them to you. You are your children’s “normal.” Given that, you know what information your child needs, wants, and can handle about your MS. You may need to have a talk with them now, or you may not. The children’s book might be the perfect tool for you, or it might not.

Most importantly, don’t not talk to your children. Educate them, make them aware, but do it on your terms, and look to what your “normal” is. In this way, your leap over that hurdle will be magnificent and filled with a sigh of relief. It will not be an echo chamber of a collective gasp of horror. Trust me.

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My Life with MS

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

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