My Story of my Daughter’s MS Diagnosis

My Story of My Daughter’s MS Diagnosis

I got the call at the end of my daughter’s second week of her freshman year in college. She told me that her feet and legs had been going numb. Knowing my daughter doesn’t complain when she’s hurt or sick, and that she is very independent, I knew something was not right. Read more

Why I Go to Therapy: It Helps

Why I Go to Therapy: It Helps

This week we’re sharing another post by Jessie+Luke‘s oldest daughter Isabella.

Hi it is Isabella again! Today I want to talk about my experience with therapy. I started going to see a therapist after my mom got sick and it helps me a lot. Sometimes I do not want to talk to my parents about my feelings because I do not want to add to their stress. It hurts a lot when you have a sick mom or dad. I could not do anything to help make her better. I sat and watched her getting sicker from chemotherapy and I did not understand why the medicines made her sick when it was supposed to make her better. I watched my dad get sadder every day because of it. I thought she was going to leave me and I cried whenever I was alone in my room. My dad cried a lot too and that made it even harder for me to think that she was going to get better. Read more

The Special Needs Mother Who Wasn't

The Special Needs Mother Who Wasn’t

Several months ago, a rather popular blog was posted about what defines a special needs family. While I respect the author’s opinion that special needs should be defined by something in the family requiring additional attention, I was left in complete shock at the acceptance and encouragement that this blog received. How could anyone judge what they do not see at home? How could anyone assume that a child who has lost a parent does not qualify as special needs? Special needs are not only physical but also psychological, and intellectual. Autism is not a physical disability, but would anyone question that autism is not a special need? Autistic children suffer from a form of retardation. That itself is an intellectual disability even when taking away the social aspects. As a psychiatrist who works as a therapist with abused children, a parent who has special needs children, and as a parent that has that child that lost a parent, I found this blog extremely upsetting. I respect the opinion to say there should be a need. However, it should not be assumed that those children do not suffer any number of emotionally driven mental conditions that the mother did not disclose to you upon saying there wasn’t a household disability before her husband’s passing. Read more

Married to Cancer Part 3

Married to Cancer, Part 3

Living with an SCI is hard enough right? No apparently it’s not, so let’s add a sick wife to plan and a pack full of small needy children to your life plan and see what kind of NBC comedy develops. It is definitely not easy to manage my own problems and my wife has been my number 1 supporter through this crazy journey. Then it became my turn, and honestly I wasn’t sure that I could handle all of the pressure. My own issues are often enough to push me over the edge of sanity dealing with my PTSD. I’ve already detailed my wife’s journey through cancer and now I will tell my side. Read more

Disability, Depression, and Suicide

Disability, Depression, and Suicide

September is Suicide Awareness Prevention Month. In an effort to end the stigma surrounding suicide and mental illness, we will be publishing several first hand experiences and promote information and resources available to those in need. Trigger Warning: This post contains details about mental illness and suicide attempts.

Being happy with yourself is something that everyone struggles with whether or not you have any type of disability. We all have things we’d like to change and how you view yourself is crucial to your own mental health. Mental health issues are quite common in people who suffer from a physical disability with depression over their situation being the most prominent. It’s also quite common in spouses who are also caretakers of their loved ones. Read more

A Child’s Perspective: Parents with Disabilities

A Child’s Perspective: Parents with Disabilities

This week, Jessie+Luke‘s oldest daughter Isabella has shared her thoughts on what it’s like to have parents with disabilities.

Hi everyone. It is Isabella again and this time I am going to tell you what it is like to live with parents who have disabilities. I want to write this for other kids who might have parents who get hurt or sick and are scared like I was too. I want to write that my dad is not different because he can not walk. I want to write about what it has been like to live with my mom fighting cancer for me and my sister. I really want other kids to know that it is ok to be mad sometimes even if it is at God. I love my mom and dad and want everyone to know how great they are too. I guess I will start with my mom. Read more

Jessie's Multiple Sclerosis

My Multiple Sclerosis

My battle with multiple sclerosis began several years ago with several battles of optic neuritis. I was misdiagnosed many times because MS is not usually diagnosed in your 20’s. I was a few years too late and a few years too early for my doctor to want to consider it as a possibility for my situation despite my other symptoms. I know that I am overly educated in my own health and what symptoms could be caused by this or that and I’m very vocal with my doctors about my concerns, I suppose I came across as someone who has spent too much time reading on the internet and convinced myself that I had MS. I demanded to be sent to a neurologist. That doctor sent me for an MRI the same day and there was my diagnosis. I’m fortunate that I have a very mild case of Relapse Remitting MS at this point. It’s a bad year if I have a flare more than twice, and my symptoms are not severe. Honestly I can’t blame my doctor for not being overly concerned, because my symptoms were and still to this day are very mild. If you’ve ever googled your symptoms wondering if you had more than a simple cold you’ve probably learned that the almighty internet will diagnose you with one of four things. You will have MS, lupus, cancer, or AIDS. You most likely suffer from health anxiety and not a serious health concern if you’re googling symptoms continuously. I unfortunately suffer from MS, lupus, and cancer. I call my body the human game of Jenga, where one illness keeps the other one in check, but I’m waiting to topple over at any moment. Read more

Cancer, a Wheelchair, and Screaming Children

Cancer, a Wheelchair, and Screaming Children

People often look at my life and wonder how I am not completely insane because of the amount of chaos I deal with on a daily basis. They ask why we’ve chosen those adopt and have more children when we are already facing many long term health problems. It’s hard to look at that and not respond with the same level of ignorance and lack of respect that they display towards my family. Although I owe no one an explanation, I instead pray for patience and guidance and attempt to educate them on my life and why and how it works. Read more

Dealing with Multiple Special Needs in a Home

Dealing with Multiple Special Needs in a Home

Living with any type of disability is never easy. When it comes to dealing with a house full of disabilities it can be pure chaos. My husband is a lower level paraplegic, suffers from a TBI, and has severe PTSD with generalized anxiety disorder . My oldest daughter is a high functioning autistic and is also a young teenager. There is a special type of angst that comes from parenting a teen and it has nothing to do with any disability. My toddler was been left unable to speak due to throat cancer she suffered from as a baby, I myself have MS, scleroderma, celiac’s disease, and to top it all off I am fighting against cancer once again. I am also an abuse survivor and struggle with severe depression at times. Did I mention we also now have a new baby? Talk about a life full of unexpected surprises! What can you can do about it? Absolutely nothing except to enjoy the good times you have together as a family. Read more

Handicapped Parking: Why are people so hateful

Handicapped Parking: Why are people so hateful?

I was having a conversation via text message with several of my friends today about the struggles of handicapped parking. I want to know what makes people so damn crazy over a parking space. Before you go on about AB people who abuse the system let me say this, I KNOW! However I do not think that is the biggest problem the disabled community faces. It’s discrimination and it’s coming from the inside people. Read more