February 4, 2020
by marfmom
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Following Your Child’s Passion

Most of us, when we envision having kids, picture them having similar interests to us. Maybe you were a dancer, and so you eagerly await the time when you can lace up your toddler’s ballet shoes. Or perhaps, like my dad, you start your child watching baseball as soon as they come home from the hospital.

Life doesn’t always work out that way though, since of course the little people we’re raising are actually people in their own right, with minds of their own. My liberal arts family was shocked to have an 8th grader (me) who went to the state science fair and later pursued a graduate degree in public health. Mom joked she didn’t quite know what to do with me!

All this to say, last year I found myself requesting tickets to….a toilet convention.

Ok, Mark is quick to correct me whenever I say that. It’s not actually a toilet convention. It’s called the Waste and Wastewater Equipment, Treatment, and Transport Show (WWETT Show). So basically…a toilet convention. :-p

Menininho has had a passion for bathrooms since before he could talk. For his 3rd birthday, long-time readers know I made him a hand dryer cake. At 10 years old this love hadn’t waned at all. I mean, we watch home remodeling shows on Netflix just for him to critique the bathrooms. So when I learned that the WWETT show would be within driving distance, I knew I had to get him a ticket. It turns out that tickets are not available to the public. Thankfully, after an email from me explaining the situation, we were gifted two tickets to the expo center.

Mark, being an engineer, had the honor of actually accompanying Menininho. “There were port-a-potties, pipe socks, shower trailers,and giant, giant trucks. It was AMAZING!” sighed M.

He came home with a bag of brochures and magazines and more facts about the industry than I care to know. Unfortunately, over the course of the past year some of the paper products were destroyed by little sisters, or had water spilled on them, or were worn out from being carried around every day. It wasn’t a surprise then when I asked him recently what he wanted for his 11th birthday, and M requested another catalog from his favorite company.

And that’s how I found myself emailing a portable toilet company last week, explaining the Menininho’s passion for toilets, how he came to love their company after WWETT, and asking if they could send us a catalog since I couldn’t see a way to join a mailing list from their website. I didn’t hear back and didn’t think anything of it. After all, direct mailings aren’t popular and how many companies would want to spend the postage on a pre-teen who isn’t going to actually buy anything from them?

Turns out, PolyJohn, that’s who. I got a UPS notification Sunday that something would be coming our way, and yesterday evening M came home to a package. It exceeded anything I could have imagined. They wrote him the kindest birthday note and enclosed not only a catalog, but some gifts as well. (The video is worth the 1:30 it takes to watch it, seriously!)

He is never going to (willingly) take off this hat. We’ll see how long his teachers let him keep it on today…

I would never in a million years have dreamt I’d have a child with an intense affection for toilets. I can’t say I understand the appeal at all. But, some people search their whole lives for their passion, and M has found his. That’s pretty amazing! So this birthday, I’m grateful for a company that went above and beyond, and that I get to have a front row seat to my kid’s joy.

February 1, 2020
by marfmom
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Keneisha and Chaiyoni’s Story

Hello, my name is Keneisha. I reside in Lancaster, Pa. with my two children Nashawn and Chaiyoni. I cannot forget our newest member Nova! Nova is our 9 month old teacup Yorkie.

When I found out I was pregnant, before I knew the sex, I was scared. I was unsure if I wanted to continue with the pregnancy; I lost a son on June 6, 2008 due to aspirating in his sleep. My son was only 3 months old. His name was Jachai. I tried performing CPR on my own son even when I knew he was gone. Losing a child is something that is indescribable! It changes you; can’t say for the best or worst. But for a long time I was angry, and depressed. I became a workaholic to ignore the pain. Just when I felt like I could move on, 7 months later I lost my brother due to being a victim of homicide. So, to find out I was pregnant in Nov. 2009 I was nervous…anxiety kicked in. Instantly the thought of abortion came to my mind, and adoption. But something changed my thoughts. I seen my baby on 3D/4D ultrasound and I knew this child would bring back happiness into my life. She was the reason to live.

On July 26, 2010 my baby girl was born. My beautiful baby girl came into this world yelling, with a head full of hair, and big brown eyes. Since I lost my son and brother, I wanted to honor them. My mom and I came up with her name. My son’s name is Jachai and my brother’s name is Kenyon. With us combining their name, hers is Chaiyoni; it is pronounced (Ky-yauhn-ee).

When you think your life is starting to go in the right direction, things are looking up for you, it’s not. I used to take Chaiyoni and Nashawn to the Boys & Girls Club after school 3 days a week. One day an America’s Best Eye Associate came in and gave all the kids free eye exams. Whether or not your child passed the exam, they gave all the children vouchers to go into their office. So, I made an appointment for the kids there. At this time Chaiyoni was 6. One by one they go into the room to have their eyes checked. The lady asks me, “has she ever worn glasses?” I reply, “no she has not.” She says, “we want to do more further testing with her.” At the end of the appointment the eye doctor says she will order her glasses but wants her to do a follow up with an ophthalmologist.

Again, I make another appointment. Again, they do the same tests and the same question is asked, “she never wore glasses or complained?” I reply “no she has not.” The ophthalmologist says to me, “I will put these drops in her eyes, wait a few minutes and i want to show you what i see.” He asked me to look in the microscope. He said, “do you see this string under her left eye?” I said “yes.” Then he says, “I’m no genius but I believe your daughter has Marfan Syndrome, have you heard of it before?” He goes on telling me all of these things I need to do, and as he is going on talking, I am trying to fight back my tears. He asked me to go back into this small waiting room while he changes her prescription for her glasses. As I sit in the waiting room, I am googling what is Marfan Syndrome? Google: People with Marfan syndrome are tall and thin with long arms, legs, fingers, and toes. I’m digging deeper and deeper as I am waiting in the waiting room. Immediately I called Chaiyoni’s family physician.

I go home and I am still doing research about this Marfan syndrome. I start to cry. I make a post on Facebook and ask for prayers. My sister in Christ inboxes me and tells me to take I go home and i am still doing research about this Marfan syndrome. I start to cry. I make a post on Facebook and ask for prayers. My sister in Christ inboxes me and tells me to take Chaiyoni to Children’s Hospital of Philadelphia. First, we have a conversation with her family doctor. She wanted to refer me to a cardiologist in my city. I told her “no, I want Chaiyoni to get into CHOP.” She says, “If you can’t get in, I can make this call to the one here.” I wasn’t trying to hear her. I told her “look nothing against you being her family doctor, but after losing a son and feeling like my voice was being overshadowed, I have to make this decision on my own.” And a week later, my mom and I were on our way to Philadelphia. They did the exam, including measuring her arms and height, looking at her fingers and feet, etc., and told me Chaiyoni had signs and symptoms. They did the genetic testing, and we got our results back a few weeks later.

Chaiyoni was diagnosed with Marfan. Once again, my anxiety kicked in. I started to think about my son Jachai.

My mom looked at me and said “Keneisha, this is where your faith kicks in! Do you trust him? Keep praying, keep fasting, keep reading your bible.” I kept telling myself, “have faith as small as a mustard seed.” Although, I doubted God and asked him “why me?” The doctors tell me Chaiyoni has all these restrictions: no contact sports, no instrument that requires you to blow in it, wear this, less sandals, more sneakers, make sure she still continues to do kid things but make sure she don’t do this and etc…I found the Marfan Foundation website, and from there I found the Marfan syndrome support group. I have gained a connection with others who are going through something similar to my daughter. This has allowed me to have a peace of mind. To let me know that I am not alone. And there is a big Marf family out there. I have made great connections.

I can’t promise to fix all of my daughter’s problems she will face, but I can promise her that she won’t have to face them alone. I am on this journey with my daughter, from childhood to womanhood. I could not be any happier and honored to be her mother. I thank the Lord for blessing me with 3 amazing children. Although my son’s life ended so sudden, he’s our Angel watching over us.

Thank you listening to my story, my journey, our beginning!

January 23, 2020
by marfmom
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Wheelchairs Aren’t a Second Best Life

I’ve seen this meme on Facebook a few times. If you can’t see the graphic, it’s a man underwater, standing beside an empty wheelchair. The caption reads “The power of water. The most beautiful picture you’ll see today.”

People share it because it feels inspirational that water is an equalizer, allowing the man to be “free” from his wheelchair. The media loves a good “overcoming the wheelchair” photo/story!

I’d challenge you to reconsider how you view physical disability though. Many wheelchair users don’t see themselves as needing to be fixed. As one writer said, words are what confine and limit us – not our chairs, which are actually pretty great. How might society’s attitudes about disability change if we worked towards celebrating people as they are, instead of viewing physical disability as lesser-than? We’d see less pity and more accommodations, more accessible venues.

Now, I’ve been guilty of this. As you know, J uses a wheelchair part time. We used a stroller for years, past the age most kids stop. When he outgrew his umbrella stroller, I started looking into a “special needs stroller.” I remember discussing this with another mom in the physical therapy waiting room one day, and she asked why I didn’t just get him a wheelchair. I was worried about being judged for having a child in a wheelchair that could walk, I said. In my head I thought, he’ll be judged for using a chair; people will see him as “less than.” And though I didn’t say it that day, if I’m being completely honest with myself, I didn’t want to see my child as “disabled enough” for a wheelchair. A special stroller seemed less…serious somehow?

But her words stuck with me, and I broached the subject to J’s physical therapist during the Marfan Walk, as Mark pushed J in one stroller and I pushed Miss R in another. His physical therapist agreed, and about 15 months (and so much insurance headache) later J had his wheelchair.

I’d thought of the chair holding J back, until the first time I saw him maneuver in one at the wheelchair clinic. It was then I realized that the chair is what’s allowing him to move forward (no pun intended). In a stroller, I always had to be there, pushing J along. With the new wheelchair and his Smart Drive, J can get around all on his own. With the chair, he doesn’t have pain stopping him from participating in activities. His peers are very understanding of the wheelchair, too (if not overeager to push him). The chair makes him free.

J doesn’t see using a wheelchair as a “second best” life. Recently when someone at church suggested that he’ll be able to walk in Heaven some day, when his body is made perfect, he was hurt because his body is perfect now, just the way it is.

As parents it’s painful to watch our children go through hard things, and I can appreciate that able-bodied people may have a hard time understanding that disability isn’t inherently bad. When you see a meme like this, consider what it’s actually saying about disability before you share it. Remember: your kids are watching and listening to you, and the way you talk about their bodies is going to set the tone for how they see themselves. Don’t let them think you believe their bodies to be anything less than perfect.