When I read Ila's blog her story moved me. I instantly admired her commitment and dedication to her husband and family. Ila's husband was diagnosed with MS when she was pregnant. He, almost instantly, began a very rapid decline which I can only imagine was incredibly difficult. My brother-in-laws mother has MS. Before meeting her I really didn't know that much about the effect it has on your body, your life, and the lives of those in your family. This made Ila's story even more meaningful to me. What amazes me about Ila is she has managed to not only keep a positive attitude amidst her trials she has found ways to be inspirational to others. Ila also faces hurdles with her eldest son. Instead of being frustrated or overwhelmed by these she has been motivated to find alternative treatments for her son and to find the good in what they experience.
Here is my interview with Ila. You can read more about her and her family on her blog: hehasMS.com
Please tell us about your family.
We are a family of 4: Marcus (34), Me (24), Cade (2), and Cas (6 months). Marcus also has 2 other boys as well from a previous marriage that live in another state.
Marcus was diagnosed with Multiple Sclerosis in December of 2010. Cade has Rickets and a weird condition that allows for his ligaments to randomly pop out of his elbows at any given moment. We are currently awaiting his evaluation for the Autism Spectrum Disorders in June. Cas is our newest addition and he has a severe allergy to dairy proteins (both casein and whey). Me, well...I'm just me.
Marcus and I have been together for 7 years, with a lot of ups and downs along the way. Despite popular belief, we are not married. Someday, when we do actually get married, the vow "through sickness and health" has already been challenged in our household.
For the most part, we are just like any other family. We just have more medical bills than most!
I can imagine how much of the parenting responsibility falls on your shoulders as your husband has struggled to come back from the initial debilitation he experienced when first diagnosed with MS. How do you keep up your mental strength?
Simple answer to that is "prayer". Also, a lot of research on my part and a lot of trial-and-error; as his disease is considered a "snowflake disease"- every single patient is different and unique in their symptoms, but they share a common ground that makes them Multiple Sclerosis patients (just like snowflakes are all different, but still a snowflake). Basically, what works for one person may or may not work for another. Mental strength for me has always been based on my faith that God is working in every situation, even the situations we don't understand and we don't like.
Your eldest son suffers from rickets and issues with his elbow ligaments, what does this entail for you as a parent? Does it limit what he can and can't do?
Well, his as far as his Rickets... Thankfully, it is something that can be corrected with enough vitamin supplementation. He doesn't have "bowed" bones from it (yet), but it does cause him bone pain. For that, all I can do as a parent is offer a pain reliever safe for his age (Tylenol since infancy and now ibuprofen as well). I can hold him when he cries in pain and snuggle him when he can't sleep because of the pain. There isn't much you can do as a parent when it comes to something like that.
His elbow ligaments...Now for that, when they do 'pop' out, it can be excruciating. He cries and won't move his arm at all. It can happen at any given moment too (a fall, bumping it into a wall, putting a shirt on, holding his hand and he falls, etc.). The very first time it happened, I was putting a t-shirt on him... It is very random. Hopefully he will outgrow this once his bones harden. We have made several trips to the emergency room for them to be manually manipulated back into place; which is really painful for him as well. After all those trips, I have learned to manually manipulate them back into place myself. They "click" back into place, which I can feel them do. It's really hard to see your child in pain, but I always know the relief that will come from manipulating the ligaments back into their rightful place.
Marcus and I really don't limit what he can do because of these things. The pain will happen regardless (Rickets) and his ligaments will pop out regardless of what he does. Like stated before, they have popped out just from putting a t-shirt on him. He deserves the opportunity to play like "normal" kids. I just have to make sure that everyone knows to be gentle with his arms and to just take him to the hospital if he won't move his arm and/or crying in pain.
How has your family acclimated to the newest addition to the family?
Our house is messier!
Actually, Cas came as a surprise, but our family has adjusted very well with him being added to our family. Life is a bit tougher for me as I try to manage a very active toddler and an infant. Needless to say, my Ergo baby carrier is probably the best money I have ever spent.
What are some of your families favorite things to do together?
We like to spend time outdoors. We enjoy going to the zoo, the playground near our home, and playing in our backyard. When weather isn't permitting and when the Summer heat comes around and the heat aggravates his MS symptoms, we like to watch movies indoors or just play with the kids (blocks, couch cushion forts, etc.). In all reality, we probably have boring lives to the outside world.
How do you find time for yourself amidst the responsibilities you have to your husband and his recovery and your eldest's disease?
To be 100% honest, I don't really get much time to myself. If I do, it's when the household is asleep and I spend that time writing blog posts, creating graphic designs for my blog, and answering emails. I do have a membership at the YMCA that allows for 2.5 hours of the kids in the "kid zone"... But, I rarely go. I have too much going on usually. When I do go, I work out during that time and just get 'lost' in my work-out. Occasionally, I get my mom to watch the kids and I utilize that time to catch up on everything I still have to do! As my boys get older and more independent, I will have more "me" time. Right now, they are just really young and demanding; and that is okay!
When did you first suspect your eldest son might be autistic?
I always knew that my little guy was different, but I never thought he was autistic. Of the Autistic children that I have met, my son wasn't like them. I suspected Autism after I was told to screen him and I researched Autism in toddlers.
He has always been "over emotional and dramatic" even as a newborn. His cries were always his pain cry, even if he was just tired.
He hated being confined in swaddles, car seats, baby carriers, clothes, etc.
Since he could walk, temper-tantrums and random melt-downs have happened on a regular basis.
He stopped taking naps at 5 months old.
He has never slept through the night (even now at 2 years old, he still doesn't).
He always has had enough energy to drain a football team.
He has always had a fantastic memory. For example, he would hide things and a week later know exactly where it was.
He has always been extremely destructive, more than usual. I always assumed that was due to his high energy level.
He has always been orderly in a sense that he lines his toys up into perfect rows and he has always chosen particular items to play with (tongs, straws, etc.).
He fascinates himself in an object and never "forgets" about it. Toy rotation is a joke with him because he will search the house high and low until he finds whatever it is that he was looking for.
He stopped eating meats (except the occasional chicken nugget) and is an extremely picky eater. He would rather starve than eat something he doesn't like. I never starve him, just for the record.
He has always "flapped" his hands or twirled them in circles, even as an infant. Now, he rubs his arms and jumps. I never knew this was possible "stimming".
He always "ignores" us and doesn't acknowledge when being spoken to and doesn't look at things that you point to.
He started out having a wide vocabulary, but then just stopped talking & decided to use non-verbal communication instead (drag you by your hand, grunts, clicking noises with his tongue, pointing, and whining).
I talked to his pediatrician about all of these things and always heard, "Oh, that's normal! Some kids don't need sleep. Some kids stop talking, some kids...." You get the idea, his behavior (or lack of behavior) was "normal".
At his 2 year well-check visit, his doctor tried to evaluate his knowledge of animals. He wanted nothing to do with it. He refused to participate, ignoring her. She'd call his name numerous times and he wouldn't look at her. If she DID get his attention, he would say "horse, I done" and would turn his back to her. This was something I was used to, his unwillingness to acknowledge being spoken too. She said his "vocabulary wasn't distinguishable to a stranger like it should be"... She said he should be sleeping. Blah. Blah. Blah. ... She said a lot of things he "should" be doing or "shouldn't" be doing ... Everything, I told her before. Now, she tells me that his behavior isn't "normal" and that he needs to be screened for all of the autism spectrum disorders.
We hear of more and more children being diagnosed with Autism. Parents are really searching for reasons why now. Has it been scary for you to think of the possibility you may be dealing with Autism as well as MS and rickets?
No, not scary. I'm kind of a chameleon when it comes to adaption. I will make it work regardless. He is my child, with or without Autism. I will love him the same. In fact, if his evaluation says he is Autistic in any degree, then I will understand my child on a different level. We always thought he was just going to be a difficult child to raise with a head-strong personality. We just thought he was being stubborn, destructive, and wild. I will have a better understanding of my son's behavior and will be able to manage it better. I just never thought that my child would be Autistic and any fears that I do have aren't because of our family's situation, they are about his future.
As far as families searching for the reasons why... I can tell you that I have read too much about "possible links to Autism" and I refuse to accept any of them. The experts just need to keep looking because the "possible causes of Autism" aren't good enough.
A family member of mine has MS and she is very concerned about holding her grandchildren as babies because she is not as stable as she would like to be. Does your husband face limitations with your children? If so how does your family handle this?
He couldn't "hold" our oldest son like he would have been able to without MS. To overcome issues with holding our son, we would have to prop his arm/elbow up with a pillow and I would place Cade into his arms. He could only hold him for brief periods of time due to pain, but propping his arm/elbow up allowed him to hold our baby boy.
Limitations with our children? Absolutely! It was much worse with our first child because he was literally just beginning his long recovery when our first was born. Cade's "pain cry" felt like a sledge hammer to his head. He couldn't change Cade's diapers at all. He was limited when it came to getting Cade dressed (buttons and snaps + a squirmy baby are a nightmare for someone with MS). He couldn't carry his car seat. He was numb, so he couldn't "feel" if the breast-milk in the bottle was too hot during a "wrist check". I checked it. If I left the house, Cade tagged along. He couldn't chase him as Cade got faster. Marcus can't run, even now. As he got better, his ability to do things got easier but he is still limited.
Right now, he can't run after Cade (who is pretty fast, by the way). He can only watch Cade, not Cas while I am away. He has a hard time changing Cade's diaper, but can if needed. Cade's toys on the floor still make it difficult for him to walk. Cade's non-verbal communication is hard for Marcus to deal with because of his MS. It's hard for him to search for the clues to put into context of what is going on with Cade, to determine what he wants. He gets frustrated easily because of it. Chronic Fatigue is a big set-back for Marcus as a parent because everything "wears him out" and adding demanding children to that only makes that fatigue worse.
Ways we deal with it:
When Marcus got Cade dressed as a baby, and now Cas, it's always zippers! Sleep-sacks have been a god-send for him to dress our boys during infancy. Their shoes don't tie, they slip on with Velcro, and the ones that do tie...I tie them up. They just move to much for him to have the ability to tie their shoes up.
Marcus only keeps Cade (for short periods of time) and I always have Cas with me.
I change 99% of diapers around here.
Marcus takes naps whenever he can (because of his fatigue)
We try to keep toys at bay for the most part
I chase Cade, because Marcus can't run at all.
Overall, the main way we manage life is I am the primary caregiver for our children. I pretty much do everything involving our children's care. Marcus plays with them and cuddles with them to give me a break.
What would you tell families who have a parent with MS or other difficult disease?
Everyone with MS is different, and every household is different. I created my website to help the general MS population cope, but I'd say that one of the biggest things anyone could do for someone with MS or any difficult disease is to try to understand what the person is going through. MS has many "invisible" symptoms and the person may "look" okay, but they aren't. Don't assume they are okay just because they appear to be.
If you are a parent with MS or any other difficult disease, ask for help when you need it! People are more than willing to help, you aren't a burden on anyone who truly loves and cares for you. If you are the spouse/friend/relative of someone with MS (or any other disease), OFFER to help them! Ask them what you can do to make life easier on them. You'd be surprised just how much small things can do to bless a family or person struggling with everyday life. The biggest advice I can give you, as far as MS goes, is that it is an unpredictable disease so you need to enjoy the moments you have with your children and you should look into living a healthy lifestyle to help manage life as it is now. Your children will grow, and what you are going through now will pass in time. Try to embrace the times you have with them now, because they grow in a blink of an eye (or your disease could progress).
How do you find time to pursue your hobbies with two children at home?
I find the time when they are sleeping or I involve them. Cade sits on my lap and "helps" me a lot.
Was it difficult for you to make the choice to be a stay at home mom or was it always your dream to be able to stay home with your children?
Well, I wasn't supposed to have kids, medically. So, when we decided to try for Cade, I wanted to stay home with him to watch him grow (and now Cas too). I want to be there for them for everything that my mom missed out on, because she had to work 2 full-time jobs to support 4 kids and my grandma. The thing is, I want the best of both worlds. I want to be home with the kids, but I also want the financial side of working. So, technically, you could say I have always wanted a "work-from-home" job since deciding to be a parent.
Have you found your blog to be a therapeutic way for you to deal with being a mom and wife?
Absolutely! I love it.
Our readers are always looking for activities for their kids, what is one of your favorite things to do with your kids?
I love doing activities that will instill compassion and a love of nature in my children; as well as a lot of sensory play.
Our favorite thing to do is go to the zoo to check out the animals. Our zoo has so many opportunities for sensory play; including a petting zoo & soon to be a "Wallaby Walkthrough" where they will get to touch wallabies.
At home: Cade loves to draw, so I give him bath crayons and let him draw masterpieces all over my tile walls in the bathroom. For Cas, I like to line up a bunch of objects on the floor (with ample space between each object) to see which one he will "army crawl" to.