Finding Hope...True Story

Recently, I had a post on the Key Ministry blog called, Finding Hope I Didn't Know I Lost. I'm always grateful to have a post on their site and wanted to share part of it with you: I read the title of the message, Let Hope Arise, on the large screen in the front of the church. “Hope, I got this,” I thought.

After the speaker began, I realized I didn’t have hope, at least not in every area.

I regretfully admit that I felt odd as we repeated the speaker who led the chant, “Something good is going to happen to me.” I don’t think I have spoken those words in years.

Even though I don't commonly profess that good things will happen to me, I don’t consider myself as a pessimist. At one time a few years ago, I was definitely one. After some health scares with my daughter and reaching unprecedented stress levels, life seemed hard as it revolved around my child's daily medical interventions. At that time, I commonly thought:
“I’m never going to live without stress.”
“My child’s never going to be healthy.”
“I can’t imagine my life ever feeling easy while managing my child's care.”

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The School People Assumed My Daughter Needed

"Is your daughter going to attend "B" school?"

People started asking me this question when my daughter with Down syndrome was just 2 years old. The question bothered me for one main reason. People assumed my daughter needed "B" school because she had Down syndrome. That didn't sit well with me.

"B" school is a day school in my area serving people with intellectual disabilities in the moderate to profound range who are between the ages of 6-21. Life skills, functional skills, and tailored academics are all provided at "B" school.

Of course, I knew that "B" school may be a possibility for Jaycee in the future. However, I didn't automatically assume she would go there just because she had Down syndrome. Who was to say that she couldn't be taught in a special education classroom, a communication disordered classroom, or a regular classroom? At age 2 when these questions started, I couldn't predict what Jaycee would need.

Still, some people asked me about this particular school when Jaycee was quite young. You'd probably be surprised by the number of times I was asked about it by strangers or acquaintances. Even a Wal-Mart cashier asked if my daughter, who was shopping with me, attended "B" school. One can only surmise that she asked the question because of her Down syndrome.

Most people who asked me about "B" school had connections to it either by a family member who attended or worked there. Everyone sang the praises of the school and encouraged me to send her there. I was never opposed to it, but I wanted to see what my daughter needed. What did I have to add to this conversation while I was raising my toddler or preschooler?

These are the sort of assumptions that parents in my situation don't like. I have heard other parents tell me similar stories. One parent of a diagnosed child ran into an acquaintance who taught special education. The special education teacher told the parent that she looked forward to having her in the class as a student one day. That comment didn't sit well with the parent and for good reason. When a comment like this is made for a child under 3, one can only assume that the diagnosis is driving the comment. This parent, like me, wanted the child viewed as a whole...not just a diagnosis.

As Jaycee began attending school when she was 3, the staff always looked at all of her abilities and challenges when making placement decisions. Early on, her inability to speak, tendency to run off, and delays in motor skills led her to an early childhood classroom- with increasing time with peers in the preschool room. When she started grade school, she went into a room for children with communication disorders who needed a strong language curriculum while making accommodations for other needs (such as her inability to write). She had opportunities to be around peers too.

As Jaycee has gotten older, I knew "B" school was coming. A battery of tests from an educational specialist showed me numbers and figures about my child that I already knew. Jaycee was eligible for "B" school. Even with her best efforts and many helpful therapists and professionals over the years, "B" school seemed to be the best option for her. Unlike the people who assumed she would need the school when she was a small child just learning to walk, the decision was made on a number of factors...not just on her Down syndrome diagnosis.

In August, Jaycee began attending "B" school. It was a big change for all of us, but we knew it was the best place for her at this stage of her life. She's settled in quite well, made some new friends, and seems to have made some connections with the staff there.

Even though Jaycee ended up at the place where some assumed she would go based off her diagnosis alone, I hope others can learn from this story. Assumptions about abilities shouldn't be made off a diagnosis alone. She's more than her Down syndrome. Ask her new teachers. They'll tell you.

I Hope I Can Love Like My Daughter

My daughter is many things. Most acquaintances seem to view her as a child with Down syndrome who can't speak very well and is often sick. People who know her well often describe her as joyful, friendly, and a girl with a big personality. Jaycee is all of those things and much more.

What always touches my heart the most when I watch my daughter is her ability to love people. She oozes love. She doesn't care if it's a stranger or a familiar person. She is not shy to display her love.

Last weekend, I took Jaycee to a pumpkin patch. As she waited in line to get her face painted, she was surrounded by a few other little girls. A younger child sat in a seat patiently waiting for her turn. Jaycee bent over and kissed her on the head three times in the span of five minutes. Jaycee would smile brightly after each kiss as she looked at the little girl who didn't quite know how to take Jaycee's affection.

Some people may see Jaycee's affectionate displays as inappropriate given her age of 12. She doesn't often go around hugging and kissing strangers, let me be clear. But, she does have moments when she will spontaneously love on people-usually younger children. I don't mind it, because I wish I was more outgoing and loving like her.

Our society doesn't act like her, me included. I don't go around hugging and loving on most people, especially strangers. I hold back my feelings and am more reserved.

I think my daughter loves on people the way God wants us to- holding nothing back. She doesn't wait for the person to reach out to her for love; she gives it away first with no expectation of it being returned. But, that's not the only way my daughter loves well.

Jaycee gets along with people who are sometimes difficult to love. I shared my perplexity to my father over Jaycee's attachment to a particular person. I expressed how I didn't understand why that person responded so well to Jaycee given that the individual didn't often express happiness for most people. My father responded, "It's easy to understand. Jaycee loves everyone with no judgment. That person can feel it."

That made sense to me. Jaycee doesn't have the same views about people. She is able to recognize what's good in people. She doesn't hold grudges. She doesn't get an attitude with people. She is a good person. She loves and loves well.

When I read scriptures about God's love, I know my daughter is closer to walking in that love than I. She's a gift. I hope I can be more like her one day.

³⁴ A new commandment I give to you, that you love one another; as I have loved you, that you also love one another. ³⁵ By this all will know that you are My disciples, if you have love for one another.

John 13:34-35 NKJV

My Book: Badges of Motherhood SNEAK PEEK

I've dropped some hints over the past few months about the book I have been writing. I am stoked to announce that it is finished! I have spent years writing these stories that have impacted me the most as a mother. Sometimes, my daughter's health issues put the book on hold for months at a time, but I began working on the book again when life settled down. It has been a dream of mine to see this thing out to completion, and I'm excited that it is now accomplished.

Badges of Motherhood: One Mother's Story about Family, Down syndrome, Hospitals, and Faith is the story of my life as a mother over the last 12 years. If you are a regular here on the blog, you know a little about my life and my children. If you don't, let me fill you in. I am the mother of two children, Jaycee and Elijah. Jaycee has many diagnoses including: Down syndrome, a twice repaired heart defect, Wolff-Parkinson-White syndrome, GERD, asthma, obstructive sleep apnea, and recurrent pneumonia. When she gets a simple cold virus, it attacks her lungs in unpredictable ways. I have been at her side through many hospital admissions and stays in the Intensive Care Unit.

As you can imagine, the events I have lived through as a mother have impacted me spiritually and emotionally. I have had to understand my Christian faith in new ways as I watched my sick child suffer again and again in the hospital. I have had to work through stress, anxiety, and fear from certain diagnoses. When people said or did things that made our situations worse, I have had to choose forgiveness. My book delves into all of these topics.

In Badges of Motherhood, I move the story from one chapter to the next using the concept of badges. The badges represent the especially rewarding and challenging experiences or emotions a mother has with her child. The first chapter in the book is the Delivery Badge, which tells the story of the births of both of my children. Chapter two is the Diagnosis Badge. In this chapter, I recount all of Jaycee's major diagnoses by sharing how they came about, who gave the diagnosis, and how her life and mine changed as a result of them. From there, we move to the Hospital Care Badge where I describe what it's like caring for a child in the hospital.

In all, there are 17 chapters or badges in the book. The most difficult chapter to write was the Intensive Care Unit Badge followed closely by the Miscarriage Badge. The most revealing chapters into my thoughts and emotions can be found in the Faith Badge and the Stress Badge. Not all of the chapters are serious and intense. The Wish Badge describes Jaycee's wonderful experience through Make-A-Wish, and the Child Baptism Badge tells how I successfully prepared Jaycee for baptism at church.

It is true, Badges of Motherhood, is as much about my daughter's story as it is mine, but our lives are connected and intertwined. She is the person experiencing the illness in the hospital bed, and I am the helpless mother wondering how I can help her. I can't imagine how she has felt as she has endured everything in her life, but I do know how I have felt as her mother.

I know that many people cannot imagine a mothering experience like mine. But, I am convinced that most mothers have their own badges too that make them who they are. It is my desire that readers can reflect on their own lives and appreciate their own badges. I also hope that Jaycee's miraculous story inspires them in some way.

Badges of Motherhood is only available on Amazon in both an eBook version and a print version. The print version is available right now. The eBook will be available November 2nd, but you can pre-order it today too! There are a few more pictures in the eBook version that aren't in the print version, but all the written content is the same. Just follow this link: BADGES OF MOTHERHOOD
Just for you- here's a look at the book's full introduction:

The signs are all there: you get less sleep, your day is centered around a tiny version of yourself, and you look forward to Mother’s Day. Yes, you are a mother. Maybe motherhood has been everything you have dreamed about. Maybe it was nothing like you thought it would be. Still, you find yourself in this unique, yet timeless, role of a mother.

Motherhood has only one requirement: to have a child. That child may have come through natural means, adoption, or marriage. No matter how the child became yours, a new world has come to you that you may have otherwise not have known so intimately.

Once a woman has entered motherhood, she begins learning new skills and having new life experiences, which are referred to as “badges” in this book. These badges tell the story of the achievements and challenges of the mom and her child’s care. The badges are symbolic of particularly special times in the mother-child relationship. Some of these badges are kept throughout a mother’s life, no matter how much time passes. Other badges can be discarded or lost.

There are some badges that all moms will go through like the Delivery Badge. There are some badges that only some moms will receive, such as the Diagnosis Badge. Some badges are highly anticipated (i.e. Child Baptism Badge) while others are not (i.e. Hospital Care Badge). Some badges can be earned multiple times for separate events or for each child, but some badges are earned only once in a mother’s life.

In all, the badges represent triumphs in the mother’s life, hardships that have been overcome, skills that were necessary for those moments, and the basic journey of a mom raising her child.

Since 2006, I have been acquiring several badges while parenting my two children. I had no idea just how much my life would change when I became a mother. Parenting has provided the most fulfilling, beautiful, and challenging moments of my life. I hope you enjoy reading about some of my badges and can value the badges you have earned in your journey as well.

Thanks for reading today's post. If you have a question for me, submit it in the comments below. (Comments are moderated, so they will not show up immediately once submitted.) Please feel free to share this post on Facebook, Twitter, etc. I hope you enjoy reading Badges of Motherhood!

Dear DS Clinic-Here's Why I Won't Be Back

Dear Down syndrome clinic,

Thank you for the reminder to schedule Jaycee's appointment this year, but I regret to inform you that I won't be coming back. I have been bringing my daughter to your clinic for the last 3 or 4 years. We initially switched to your clinic because we were at a loss with our daughter's health. The referrals you made to specialists in your hospital have been enormously helpful, and for that, I'm grateful.

But last year our visit to the clinic was not helpful. The only person who had anything positive to say was the speech-language pathologist (SLP) who was impressed with Jaycee's ability to communicate with her speech generating device. Maybe the fact that I'm an SLP caused this person to be a little more intrigued by Jaycee's communication and attempts at verbal speech. Whatever the case, the SLP interaction went well, but not much else did.

Our individual meetings with the occupational therapist (OT) and physical therapist (PT) consisted of them watching Jaycee make certain movements or do certain tasks. I was asked several questions. The bottom line from both therapists was that Jaycee's muscle tone was very low, and both appeared concerned by the things Jaycee couldn't do. From my perspective, she's been "really behind" her entire life, so I don't anticipate that magically changing as a preteen. I didn't hear anything real positive from either person.

Both suggested that we needed to seek private therapy to help her- aside from her school therapy she already received. I explained how her muscles have been affected by her hospital stays and illnesses. She use to bounce back from being in a hospital bed for a week, but now she needs quite a bit of recovery time. In addition, we have done private therapy off and on in the past that resulted with minor improvements and varying amounts of co-pays with our health insurance. Private therapy is not cheap. When someone suggests it needs to be done for Jaycee, I understand where they are coming from but last year we were paying off a large medical bill. We weren't looking to add to it.

My biggest problem during the 3 hour appointment was the nutritionist. I know I'm overweight, and I know my child is overweight. I blame much of my own weight gain on the stressful events that have occurred with Jaycee. I have had to cope with her diagnoses and her intense medical care and scares on my own, and I often turned to caffeine and food for comfort. In the past, I haven't always fed Jaycee the best. I know I can improve. However, I didn't need the hour long lecture on weight gain, nutrition information, and food facts. The plate demonstration, I felt, was a bit over the top. I have a Master's Degree, and I felt like at some point the whole thing became a little insulting.

When I tried to explain that part of the problem was the regular use of oral steroids (5 times last year prior to the appointment), frequent illnesses that often include multiple treatments a day for weeks, and a few hospital stays, they were immediately dismissed. I get that the bigger issue is me and what I'm feeding her but to downplay all of Jaycee's health issues that affect her everyday life (and mine) was off putting. It is something to consider. Her biggest health issue isn't her Down syndrome, constipation, and slow metabolism. She doesn't fit in the normal Down syndrome box. Her respiratory status is a major factor in everything we do or don't do. Sometimes, she (and I) are home bound for days and weeks at a time juggling treatments and medicines. Getting her to exercise in the middle of that is not a priority nor even a possibility with her labored breathing. In those times, I often feel like I'm in survival mode as the strain of monitoring her breathing weighs heavily on me.

After an hour, the nutritionist finally exited the room, and it was the doctor's turn to reiterate what the others had said. She, too, continued the lecture on my daughter's weight and how it was detrimental. She, too, was not concerned with how her frequent illnesses contribute to it. At that point, I gave up. I knew my role was to be quiet, accept the handouts, and agree to work on her weight.

Before the day ended, we met with a behavioral specialist. This was the person I was excited to speak with because his advice has always been helpful. At first, the conversation was driven by the topic of the day (her weight) and her lack of interest in exercise. He did provide some helpful ways to try to change that aspect. Then, I finally got to discuss the main concerns I wanted to bring up for this appointment- my daughter's increasing refusals, fears, and displays of anxiety related to all things medical. This concern of mine was something that I did need assistance with because it impacts every trip to the specialty appointments. This was my one priority I wanted to discuss that day with the team, yet it was given very little time. Jaycee's anxiety and behaviors have led me to avoid taking her to routine appointments by myself. I can't do them alone. If this would have been listened to, perhaps, you might also understand why private therapy in a hospital setting (which would be my only option given where I live) would be emotionally draining for Jaycee and I due to the fear she has associated to such places.

When the clinic appointment finished, I felt drained as I made the 3 hour drive home. I started to replay some things in my mind, and self-doubt started to creep in. I shed some tears later that night and again the next few days. I felt frustrated by the appointment, the focus on my child's weight, and my parenting that seemed to come into play. I felt like a crummy mother, and I felt that one problem with Jaycee had been singled out with little praise for anything else I do as her mom. I didn't like how I felt after the appointment. I have enough to deal with in her life as her caregiver who helps her daily with her bi-pap, nebulizer treatments, airway clearance, medicines, and homework.

When I read the letter to ask me to schedule a visit, I decided I wasn't going to add to my stress this year. I have made some recent changes with our diet, but I feel like it probably wouldn't be enough to make the nutritionist or the doctor happy. I feel like we are in a good place, but I don't know if it will be good enough. Thanks to a suggestion from my Aunt Sandra, I found a way to get Jaycee to exercise in the past year without much resistance. Headphones and an iPod with her favorite songs did the trick! Still, I doubt I'll hear any accolades. I'm sure no one would want to hear about Jaycee's 4 hospital admissions since our last visit, 4 oral steroid courses this year, and the long battle to get proper foot braces that allowed her to walk without pain. I feel that the focus will be the faults. For those reasons, I will not be back to your clinic. Maybe next year, I will feel differently. But for now, I'll let the six other specialists Jaycee sees be enough. They monitor her weight as well, and I'm aware of the goals we need to achieve.

I hope if I do come back that I will feel acknowledged. I hope that my daughter can be viewed as an INDIVIDUAL with Down syndrome who certainly doesn't fit every characteristic. I also hope my own concerns can be discussed more at length.

Sincerely,
Jaycee's Mom

Diagnosed: 3 Views from the Church Body

Last month, I had a post on Key Ministry called, Diagnosed: 3 Views from the Church Body. I wanted to talk about the way a child's diagnosis is perceived by Christian people, the remarks they tend to say based upon their perceptions, and questions these views have brought me. I've written a similar post on this blog, Does God Make Down syndrome, which has been viewed every week for the last 3 years making it my popular. If you missed the post on Key Ministry, here's the start of it with the link to the full post below.

When my daughter was born with Down syndrome and a heart defect 12 years ago, my eyes were opened to how people within the church view health, illness, and disability. I was always in good health, so I never knew the attitudes and beliefs held by some and how they were expelled in and outside a church building.

After my daughter was born, I experienced how Christian people view and treat those with a diagnosis. It seems that I have encountered 3 strong views among people. Some of these have resulted in positive experiences and some negative.

1. My child’s diagnoses were from God.There are some who strongly feel like those with various disabilities, especially those with Intellectual Disabilities, are special angels sent directly from God. People who believe this say things like: God must make so many people with Down syndrome, and He chose you. God gives special children to special parents. God chose you to be her parents, because He knew you could handle it. Having a child like yours is a special blessing from God. Special kids are special blessings.

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