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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Parenting with MS

By Matt Cavallo

Watching my oldest son, Mason, turn and walk into Kindergarten for the first time sent a flurry of emotions through my soul. I was feeling both proud and incredibly sad knowing that my baby was now a schoolboy. The sadness came from deep inside remembering back to how hard it was for my wife to conceive due to issues I was having as a result of my Transverse Myelitis and MS.

The pride came from thinking back to a childhood friend. When I was in Kindergarten, I had a friend in my neighborhood named Conner. His mother had Multiple Sclerosis and she was confined to a wheelchair. Even now, I remember Conner’s strength and the sacrifices he made as a five year old to care for his mother.

When I was diagnosed with MS, my biggest fear was that I was not going to be able to be the dad I had always dreamt of being. Deep down, I didn’t want my child to have to care for me in the way that Conner had to care for his mom. Now, eight years after my initial diagnosis of Multiple Sclerosis, I proudly walked my Mason to his classroom, hand in hand.

As he let go of my hand and I watched him walk into a new chapter of life, I knew that his understanding of the world was going to grow each and every day. With his new understanding of the world, comes a new fear. How do I explain to him that his daddy is different from the other dads? How do I tell him that I have a neurodegenerative disease and that the big, strong guy he knows might not be that way forever?

As a young dad with a chronic disease, I have been looking for a way to talk to my boys in words they can understand. Especially for Mason who now has more questions than ever before. One of this resources that I have found in my search is, Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s MS. This is an illustration book for younger children that helps explain MS in words they can understand (don’t Matt and sonworry, moms – there is a Mommy’s Story too). With this resource, I am able to have a conversation with my boys and answer the questions that they have about my condition.

Knowing that there are resources to help me talk to my kids about my MS in a way that they can understand has helped to mitigate my fears and focus on the pride I have in raising two people who are loving and caring individuals.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

 

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