Am I Being Real?

"Don't you ever struggle?"

I was surprised I was asked this question, because I thought everyone knew I have struggled. I've questioned my faith, I have fought post-partum depression, and have wanted to throw in the towel. I have cried many tears after every diagnosis my child received, and experienced uncontrollable anxiety in response to some of her delays and illnesses.

I have hinted at some of these issues in my writing. But, I suppose that much of my writing does focus on the positives instead of the negatives. There's a few reasons why I don't often talk about my ugly feelings and struggles that pertain to my daughter's diagnoses. The first being that even though I still have occasional struggles mentally and emotionally, I have grown so much. If I would have been writing during the first 3 years of my daughter's life, I guarantee you that I would have won the world's most depressing blog award. I was completely overwhelmed by Down syndrome, the heart defect and surgery, the medications, the developmental delays, therapy appointments, doctor's appointments, and feeling like I was never doing enough. Yes, I struggled.

My daughter and I have been together for 11 years now. I know the Jaycee beyond the diagnosis. Let me tell you, she's a pretty great child! Initially, I had a hard time finding Jaycee in the all the labels and medical problems at the beginning. But, my feelings are much different now. I am not overwhelmed by Down syndrome, her delays, and her Intellectual Disability. I'm just at a different place where the struggles are not front and center.

I may have dressed up as Barney a few times for Jaycee while she was growing up. That's love folks!

The other reason I don't share all my ugly feelings on here is that I know for a fact that some people who are considering abortions look at my blog. I don't want negative post after negative post on my blog, because I don't think that would represent how I really feel about my daughter. I would choose my daughter a million times over. After all, every parent has times that are hard for their child. A typically developing, healthy child can be bullied at school, be unbelievably disrespectful to parents, and cause all sorts of heartache and headaches for parents. Nearly every parent has some problem with their child, but I do feel that fact is overlooked by some outsiders looking into the world of disability. No child is guaranteed to excel academically, socially, or athletically-Down syndrome or not.

Still, there have been some rough patches in my parenting journey. Sure, it wasn't fun changing a 4 year old's diaper. Yes, I use to break into a sweat with the thought of taking my daughter out in public by myself because she was going to run off from me. And to be honest, the lack of babysitters and respite care has been a real problem for years. Please don't get me started on the medical bills! I think my family could have taken a dozen or so trips to Disney on what we've spent.

So I ask myself, "Am I being real on here?"

If I am not honest about ALL of my feelings, am I alienating some people? Are there some struggling parents who read my blog who think every parent is always happy? Do they read my posts and feel alone? I hope not.

I recall a few years ago being in an online Down syndrome group of moms. One mom commented that she often "forgot her son had Down syndrome." Another mom bravely wrote, "I can think of nothing else but my son's Down syndrome." Then all hell erupted on this online Down syndrome community. Moms took sides. Some claimed that a "good" mother should be able to see the past the diagnosis. Others (like myself) defended the mother because there are some times in life when the diagnosis does seem to take center stage of life though no one intends for it to be that way. The group was never the same after that heated discussion.

That online feud has stuck with me years later. I never want to be the person who causes a mom to feel bad about their feelings. I don't want to come across as someone who seems to say, "I'm doing great. Why aren't you?"

The truth is that I have struggled. I've had moments when I have wanted to throw the covers over my head and stay in bed all day. I've envied other parents whose "big" problems would be a piece of cake for me.

But you know what?

I DO get out of bed every day. I face the problems we have and try to learn something from them. I love my daughter fiercely (and my husband and son). I experience short lived heartache, and then I experience tremendous joy! We have a rough patch, and then we have some very calm weeks and months. I can't imagine my life without her nor do I want to! Yes, there are hard times, but there are really, really good times too.

That is the REAL me!

What is a Woman Entitled to? Thoughts on pregnancy, babies, and abortions

There is a desire within many women to have children. It is a woman's right to have children if they are so able to conceive them. Many of us accept this right. There is no one in America forcing abortions nor are there laws limiting pregnancies or the number of children one mother can have. If a woman here chooses to have a baby, then they are generally supported under almost every circumstance.

Medical advances have even allowed women struggling to conceive to achieve pregnancy when they couldn't otherwise do it on their own. Fertility treatments are accepted in our society. There is support for the idea that we believe that all women should have the opportunity to bear children.

But what happens to that woman after there is a successful pregnancy?

Is it reasonable to expect a healthy and typically developing fetus?

Where do rights end and entitlements begin?

When it comes to pregnancies and Down syndrome, there seems to be a worldview that can't be denied. As I have previously written about, Iceland has a 100% abortion rate when a fetus is prenatally diagnosed with Down syndrome. 100%!

Other statistics also show the majority of women will choose termination of the pregnancy when Down syndrome is diagnosed. I have read many reasons that women give for this decision:
-They believe a child with Down syndrome would not enjoy their life.
-They believe they would not be capable of taking care of a child with special needs.
-The woman feels there is a stigma associated with being a parent/family of a child with special needs.
-Doctors encourage the women that they can easily try again.
-The women believe their child's life span will be shortened.
-The women have great fears about their child's future and possible complications.
-They believe they will be raising this child for the rest of their lives.
-The condition is not reversible and the severity of problems cannot be predicted.
-They believe it is the best thing for their child.
-They believe that raising this child would be too costly.

Beyond termination rates, there seems to be increasing pressures around the world to not judge those who choose termination and accept the individual's choice in the matter. In November of last year, France banned a telecast of a short video called "Dear Future Mom," which showed people with Down syndrome leading happy and productive lives. The Council of State declared the video “inappropriate” for television broadcast because it is “likely to disturb the conscience of women who had lawfully made different personal life choices,” i.e., those who had aborted their babies with Down syndrome. An article on the Huffington Post recently reported that the Netherlands Minister of Health had this to say in regards to Non Invasive Prenatal Testing that will be available to all pregnant women there, “If freedom of choice results in a situation that nearly no children with Down syndrome are being born, society should accept that.”

No ma'am. I will not accept that.

As I have read through many stories on increasing abortion rates in countries who mandate prenatal screenings, I am left with one question.

What are women entitled to?

And that question sparks other questions:

Are women entitled to healthy babies?
When a woman decides to get pregnant, should that mother acknowledge that there is a certain amount of "risk" involved?
Doesn't parenting any child involve challenges and risks?
Is an abortion really merciful if you take away any chance the child had at life?
Should women determine if a diagnosis warrants a death sentence?
How is the proposed worth of life being determined?
Are women who hold strong convictions about equality committing discrimination against their own children when they choose termination?

I realize that these are not easy questions and generate a wide variety of answers.

I do believe though that EVERY fetus has a right to life. That is a right that should not be denied. The idea that should change is a woman's entitlement to a healthy child. That should not be a guarantee because it is unnatural to expect perfection.

When I was pregnant with my first child, I never feared having a child with any problems. I did not want prenatal testing because I wasn't going to terminate no matter the outcome. (That was still true for the pregnancy with my son later.) However, I never thought disability in any form would happen to my child.

When my daughter was born with Down syndrome and heart defects, I did have to work through many emotions and thoughts I had in my life about justice and fairness. I learned just how selfish my heart was. I felt I deserved a healthy child because I was a good person and a person of faith. When my expectation did not match up to reality, I had to come to understand some flawed ideas in my personal worldview.

Through my experience with my daughter, I understood that no one is guaranteed perfection in life. I had no control over the gender of the baby or its physical development. When I became pregnant, there were a million different things that could have went wrong (or right) with my baby. Down syndrome was something that could have happened to anyone's pregnancy, but it occurred with mine. There are no guarantees in life. I was never entitled to a perfect, healthy baby even though the odds were in my favor.

Here's something that my husband and I want you to know:

It is much more compassionate to give your life in service to another human being than to never give that person an opportunity to exist.

Don't be afraid of a diagnosis. Don't be afraid of the life you will lead. You are stronger than you think. Your capacity to love will be greater than you dreamt. You might not have imagined this life for yourself or your child but it does not mean it will be a disappointment.

"A World Without Down's Syndrome"- My Take

Have you ever watched or read something that resonated with you strongly?

That happened to me recently. Twitter was all abuzz about a BBC documentary "A World Without Down's Syndrome." The hashtags #justaboutcoping, #worldwithoutdowns, and #worldwithdowns grabbed my attention. I decided I had to check this documentary out for myself.

Sally Phillips, an actress, screenwriter, and mother to a child with Down syndrome, tries to explain the complexities that arise when countries mandate prenatal tests, which have become more accurate in definitively diagnosing Down syndrome.

I'll be honest, I thought the title was a little attention grabbing when I heard it. There is no possible way that this world would ever be rid of the genetic condition of Down syndrome. Even though, I am aware that abortion rates are extremely high when babies are prenatally diagnosed, I have always felt there would be a pocket of people who could accept a baby with Down syndrome.

After watching this documentary, I felt much less optimistic. In the UK, 90% of mothers decide to terminate pregnancies in which Down syndrome is diagnosed in screenings. In the UK, late term abortions are permitted due to Down syndrome being considered a severe disability. In Iceland, the documentary reports the number of terminations became 100% after screenings were mandated. How is 100% even possible?

When the credits rolled at the end, I wept like a baby. I cried for the ignorance of people. I cried for the injustice of the unborn whose lives are never lived just because a test shows they are going to be different. I shed tears over the fact that people do not want to have a child like mine. I sobbed for the women who are put in this situation to decide. And, I prayed for the people of this world and their skewed definition of humanity.

Surely this documentary was biased right?

I don't want to believe we live in a world that views people with disabilities as "burdens" and questions their right to life. But, then I read other things online too. Take Richard Dawkins, a scientist, who said on Twitter it would be immoral to carry on with a pregnancy with Down syndrome. He offered no apology for his statement claiming that he was approaching this subject in a logical way, and that the woman ultimately has the right to choose and try again.


I had a dozen questions in my mind after watching this documentary such as:
-What constitutes a good life?
-Or better yet...what is the purpose of life? Success? Achievements? Independence?
-Is the termination of a pregnancy confirmed with Down syndrome seen as a mercy for the unborn baby or an escape for the parent who was expecting a child with no disability?
-If Down syndrome is a reason for termination, where is that line for other disabilities or conditions? In other words, what are "acceptable" conditions that termination would seem inappropriate for?
-Should every pregnant woman expect/deserve a healthy baby? Is it a right of the woman to receive a healthy baby?
-Should a fetus only be guaranteed its life when it's genetically perfect?
-Why is disability/Down syndrome perceived so, so negatively?
-Is our world simply chasing after perfection, which will truly never really exist?

These are questions with no good answers.

You see I don't believe God intended for us to make these decisions that science now allows us to make. I fear for those with disabilities who, in my opinion, face the greatest discrimination with smallest amount of advocates.

My daughter has taught me that a world with Down syndrome is not so scary. When we were first told Jaycee had Down syndrome, I knew of 1 person in our community with Down syndrome. One! Since then, I have met other people with Down syndrome in our local community, but we felt isolated for so long.

Because of that feeling of isolation, we made a choice early on to try to integrate Jaycee into the community. She attends church with us. She attends public school. We try to take her to community festivals or parades when possible. I have written a few articles for our local newspaper regarding Down syndrome and have arranged public fundraisers for our Down syndrome Association. All of these are our family's attempts at normalizing Down syndrome in our community.

We have always felt we may never be able to reach the world about acceptance of those with Down syndrome, but we may be able to impact the people around us. Hopefully these people know that we support a world with Down syndrome.

Down Syndrome-Web List

There are many wonderful websites that provide information about Down syndrome. I have made a small list of websites that I have personally used over the years. This is not an all inclusive list; these are just the ones I have referenced most often.

If you need more information on a topic with Down syndrome, check some of these out.


Organizations with general information and advocacy ideas:

The National Down Syndrome Society

The National Down Syndrome Congress

National Association for Down syndrome

Down Syndrome International

Global Down Syndrome Foundation


Websites for the newly diagnosed:

Down Syndrome Diagnosis Network

Down Syndrome Prenatal Testing

Brighter Tomorrows


Websites with developmental & health information:

DS-Health

Down syndrome Org

Talk-DS

Down Syndrome Education International


Have a website you think others should know about? Comment below. (Comments are moderated.)



This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

When My Brave Face was too Brave

2009

I stared out the window as my husband drove. I rubbed my growing belly and nervously shook my foot in the passenger seat.

"Do you really think everything will be fine on the ultrasound?"

My husband reassured me that it would. He had been doing that for weeks. My 20 week ultrasound for pregnancy #3 was finally here. It was a day I dreaded and looked forward to all at once.

I looked back at my daughter smiling in her car seat. I reminded her we were going to get to see the baby in mommy's tummy today. She signs, "Baby."

Baby. Yes, I should be carrying a baby in my arms now and not my tummy. My second pregnancy ended abruptly at 11 weeks. I never knew that baby's gender or gave him/her a name but the loss was real and heartbreaking.

Now, I am well into this pregnancy and more nervous than ever. Is it possible for things to go right this time?

At the ultrasound of my daughter at 18 weeks, I was not worried at all. We found out our baby was going to be a healthy girl.

Imagine my surprise when at birth we found out that she had Down syndrome and a heart defect that would need open heart surgery within a couple of months. My daughter's surprise diagnoses and the miscarriage led me to being overly paranoid about this third pregnancy.

I was not necessarily worried about Down syndrome or a heart problem. I was worried about other conditions, some rare, that I had read about or had experience within my job. I was extremely paranoid. I put on a brave face for most people, including the doctors. My husband, on the other hand, knew every crazy thought I had. Poor guy.

With a million thoughts in my head, I soon found myself on that examination table in a darkened room. After a few minutes into the ultrasound, I marveled at the baby on the screen and looked at my husband and daughter watching too.

I then told the ultrasound technician, "You know you are leaving me in suspense on whether it's a boy or a girl."

The woman in a cold response and judgmental tone said, "I'm more worried about the health of the baby. I haven't even looked at the gender yet."

Uh....did she not see my daughter in the room? Did she not read in my chart that my last pregnancy didn't work out? Did she really think I wasn't worried?

After that, I kept my mouth shut. I was on the verge of a complete ugly, crying meltdown. I wish I would have had the composure to tell her what I was really thinking, but I couldn't put the words together.

I did not have the strength to ask, "Is the baby healthy?"

Of course, I was worried about the baby's health. I just couldn't ask the question. I was too afraid of the answer. If something was wrong, I knew my mental health was going to suffer. How could I go on if...?

Baby boy Elijah on the ultrasound

When she did announce that all was well with our baby boy, I let out a sigh of relief. Most of my worry subsided. The rest of it didn't go away until he was born and I could see him for myself.

All these years later, I remember that technician and her tone with me. Maybe she had seen too many parents get hung up on gender reveals. Maybe some parents were just really annoying at ultrasounds. I am not sure why she got an attitude with me, but it really wasn't necessary, especially given my history.

I am also sure there must be nervous parents who express every fear and worry to their doctor. I was not one to do that, especially with a stranger. Apparently, my brave face was too brave. Perhaps, this lady needed to see that I internally wasn't that brave.

Though that interaction with the technician wasn't the best, I did learn something from it. Medical professionals aren't in my head. They don't automatically know what I am worried about and don't understand my point of view if I don't tell them. Even though it may be difficult for me, I have learned to take off my brave face once in awhile and be the honest, possibly neurotic, parent that I truly am. 

So when I ask our family's professionals,
-If Jaycee's obstructive sleep apnea is getting worse, how great is the risk when her mask slips off at night?
-Is Jaycee going to need this medication forever?
-Is she going to recover from this illness?
-If she is 10 and can only write her name, how far do you think she will go with writing?
-Is this normal?

then you know my brave face is off exposing my fears and worries. It is then that the professionals and I learn from each other and have a better understanding of where we both stand.

To all you other moms out there wearing that brave face constantly, do not be afraid to take it off and reveal what's underneath once in awhile.

Mom to Mom: After a Child's Diagnosis

When your child is given a diagnosis, a mom's life changes. I have found through my personal life and my work as a pediatric speech-language pathologist, any identified problem impacts a mom. Everything from a late talking toddler who needs speech therapy to a child with very obvious developmental delays needing lots of support, a mom worries about their child. I thought I would share some things I have felt and observed over the years.

-After a diagnosis, you feel all sorts of feelings.
You might feel relief to finally know what is wrong. You might be upset, sad, depressed, guilty, ashamed, lonely, worried, etc. I don't know anyone who does cartwheels when their child is given a diagnosis. Let's face it, it's hard. That diagnosis comes with labels, possible limitations, potential problems, and changes to your routine. These are real and it is not easy. As a mom, you love your child. You wish you could spare them from this pain and difficulty.

-It's common to worry about your child's future.
As soon as Jaycee was born, I was immediately thinking about how she may not marry, have a child, and live independently. I worried about things that were days away, months away, and years away. The future seems so hazy and questionable when there is a diagnosis given. Concern for the future is understandable but it doesn't do much good. I wasted too much time grieving things that were years and years away. On the other hand, maybe I have already worked through some of that pain. Remember to take it one day at time because only time will reveal your child's future and abilities.

-Family members are all on their own time table with the diagnosis.
Some people can stay in denial longer than others. You can't rush people into accepting something they are not ready for. Sometimes one parent is ready to get a diagnosis while one is refusing to believe there could be anything wrong. Other times, the parents are both on the same page but a vocal grandparent is not. Provide information, allow people to ask questions, and try to be patient with people. If someone is not ready to accept information, then you aren't going to convince them. Keep the lines of communication open but don't get frustrated with people you can't help.

-People will upset you.
This is a fact! There will be many, many people who will say the wrong thing. They will trigger many emotions ranging from sadness to anger. People don't always know what to say to you. They may end up saying something insensitive, ignorant (from lack of knowledge), or negative that will hurt you. The sooner you learn to forgive and ignore, the better. I have found that I can choose to let things go and not hold hurts, but it is very hard to do, especially in a traumatic time. For all the people that will say hurtful things, there will be a few gems that go above and beyond your expectations for kindness. Hold on to these relationships and cherish these instead!!

-If you are overwhelmed, get help!
The time after a diagnosis is a time of adjustment. It's normal to be upset and even sad. But if you are really struggling with depression or anxiety, seek help from a friend, a prayer partner, or even a doctor. You have to be strong and in a good mental state as the mom, so take care of yourself.

-With everything your child's diagnosis demands, keep the parent-child relationship sacred.
There are many decisions you will have to make for your child's care. It took me years to understand that I'm Jaycee's mom first and not her nurse, teacher, or therapist. Sure, I need to help her learn skills but if all of that learning and work is getting in the way of our relationship, then it's a problem.

-It gets better!
The first 3 years of Jaycee's were the hardest and busiest for me. Having early intervention in the home was extremely awesome, but some days the home therapists was annoying. The multiple appointments each week and people coming in and out was overwhelming some days. Developmental milestones are extremely important those first few years. When your child isn't meeting them at their intended time, it is high lighted by doctors, friends, and therapists. An innocent "Is she walking yet?" from a stranger would make me want to cry when Jaycee was over 12 months. I found that when Jaycee started pre-school and was measured against her own progress, things were easy for me to manage emotionally and physically.

-Understand that love is powerful!
You will have times when you question if you are capable enough. You will wonder if you are strong enough to make it through different trials. Trust me, you will!! Remember your strong mother-child relationship....love will grow and grow from it. You will make it because love is the ultimate motivator for everything you do. The love you have for your child will get you through the hard days and help you look forward to better days.



So, if you are just getting a diagnosis for your child, stop. Take a breath. Look into your child's eyes. Refocus. Every time you feel overwhelmed, look into that sweet face, and know one day you'll have a story to tell just like me. It will be a story full of twists and turns but one that centers around love, hope, and family.

E-book Announcement

I am excited to announce that I am part of an e-book recently released called When a Diagnosis Changes Everything: A Collection of Stories from Mothers of Special Needs Children. There are 11 moms who share the stories of their children being diagnosed with a variety of developmental and medical issues. I share the story of Jaycee receiving multiple diagnoses with the focus on her diagnosis of Wolff-Parkinson White syndrome.

This book was the idea of Kera Washburn, who edited, compiled, and contributed to the book. Kera writes over at The Special Reds.


I read the book in its entirety and feel it's a great read for moms recently experiencing a diagnosis for their child as well as those who are years into their child's journey. It's also a great read for professionals or extended family members who would benefit from personal insights.

You can purchase the book here.

The Power of Love

At church, we often sing about and talk about the love of God. It is described as unconditional. God loves us when we are good, bad, saved, unsaved. His love is always there. It is hard for us to comprehend and grasp this because as humans, we often give love based upon conditions and worthiness.

*******

Sometimes, I think about pregnant women sitting in a doctor's office being told their unborn baby has a problem. Maybe it's Down syndrome, cystic fibrosis, or some other long term, life-altering diagnosis. I think about these women being told this upsetting news by a doctor, who is most likely telling them only negative things about their unborn son or daughter. I feel for these women.

Once in awhile, I will converse on-line or in real life with women who get a prenatal diagnosis. Some are deciding what to do. They want to know what their life will be like, what their child will be like, and if their other children would be hindered from having a sibling with special needs. Of course, it's impossible to predict any child's abilities and weaknesses prenatally with any certainty. If I present 10 kids with Down syndrome to this frightful woman, she would probably get 10 somewhat different pictures.

I try to remember that these are scared women asking reasonable questions instead of feeling insulted that they don't want a child like mine. I feel pressured to share positives about raising my own child who has a number of health issues and downplay any difficulties (i.e. trouble speaking, surgeries, frequent illnesses). I try to find the right words to say in case I can make a difference for that unborn baby.

Lately, I have reconsidered my "selling points." Because, when it all comes down to it, the power of a mother's love is the only thing to tell them: Yes, your child will have bad days, have difficulties, get sick, and sometimes make you feel stressed, but you will love your child so much. You will celebrate their victories and try to make their hurts go away. You will love your child, and you will adjust your life plans and goals as needed because you love them.

I love Jaycee. She's not the greatest athlete or student. Most likely, she's going to need me the rest of her life, but that's ok. I love her. She's my child. Our love and bond has gotten us through some rough patches and seasons. Much like the love of God, this love is hard to explain and describe until you have experienced it.

So, my thoughts about these women who are contemplating what to do with their pregnancy are this: You will be stronger than you ever imagined you could be. And you will learn just how powerful love is.

What Pro-life Should Mean

I'm a firm believer that every baby has a right to life. I know there are many that share this belief too. This is not a post to convert people to become pro-life. This is a post to challenge people who are already pro-life. 

When you believe that abortion is wrong, then you believe that every child born with all sorts of medical and developmental challenges should be given a chance at life. I believe this. I believe the world we live in is full of diseases and conditions that God never intended for anyone to have. Yet, the world is full of evil and bad things because the world is not heaven-it's not perfect. Perfect souls are born in bodies that are imperfect. Regardless of your thoughts on this subject, let's just talk about what happens after a pro-life decision is made after a prenatal diagnosis. Then what....

Raising children with special needs (or special purpose as I call it) is difficult. Outsiders do not often know how to support these families. When my daughter was born with Down syndrome and a heart defect, I got more "I'm sorry" statements then "congratulations." We had a few people literally cry with sadness while seeing our baby for the first time. The attitude of most Americans is basically-anything outside the realm of typical is considered undesirable.

It's hard to know what to say and do in situations when a disability is involved. But I wonder how many people are pro-life champions but go on to look at babies and people with disabilities with wrong attitudes. I think if we truly believed every life is worth something and is a blessing, we would stop saying things like:
-I'm sorry your baby was born with ________.
-I don't care what gender our baby is as long as it's healthy.
-Maybe you miscarried your baby because something was wrong. You wouldn't want that would you?
-Maybe your miscarriage was actually a good thing in disguise.

Instead we would say things like:
-I know it's going to be hard because your baby was born with ____ but your baby is a gift. I'm here to help you.
-Congratulations on your baby.
-I'm blessed to be pregnant and blessed to have any child.
-I'm sorry you had a miscarriage and your baby's life ended abruptly.  How can I help you?

Maybe if people were truly pro-life, they wouldn't stare at people with disabilities. They would teach their children to respect and value all people. They would make an effort to reach out to families who are raising children with disabilities. People in church would be more willing to accommodate children with disabilities even if it's not convenient.