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!

My First Lie as a Mother

Years ago, I nervously sat in a doctor’s examination room filling out a form. Without thinking, I read through the questions giving the “correct” answer and not the complete truth. I now understand that what I thought was a little lie was actually a huge untruth.

Moments before I became a liar on paper, I was in the waiting area with other patients. There were some women here for the same reason I was, a 6 week post-delivery checkup. On the floor next to me asleep in the car seat sat my first new baby, Jaycee.

During the long wait, I was forced to look at the other moms with their new babies. They were the moms I thought I would be, holding healthy children and gushing with joy. I watched a mother snuggle her new baby nestled in soft pink blanket before happily handing the baby over to her joyous grandma. Another mom sitting along the wall, gently lifted her crying newborn baby out of the car seat. The cries were soon stopped as a bottle was prepared and given to the hungry baby.

Meanwhile, I sat in an uncomfortable chair calculating the number of ounces Jaycee had drank today and how many we had left to go. I worried that the appointment would go longer than expected, messing up Jaycee’s schedule for feedings and medications. I yawned and fought to stay awake feeling totally exhausted by Jaycee’s intensive round-the-clock feeding schedule meant to increase her weight as quickly as possible before her open heart surgery. The longer I sat, the more jealous of the other mothers I became. I willed the nurse to open the door and call my name so I could soon retreat back to my home with Jaycee.

By the time, I finally heard “Evana” I found myself on the brink of an emotional breakdown. The initial assessment with the nurse was quick and then I was handed that form. The screener for postpartum depression was staring me in the face.

I didn’t need a questionnaire to know I was struggling. I had struggled since the day the doctor told me my daughter had Down syndrome, an AV canal heart defect, and was in congestive heart failure. I was expecting a healthy child. As a 25 year old mother, I had no reason to suspect my baby would be born with any problems.

Newborn Jaycee and I during a feeding at home

And there was that screener in my hand. As I ran through the form circling answers as to not raise too much attention to myself, I suppose part of me didn’t want to admit that I needed help. I felt at this point so early after Jaycee’s diagnoses my feelings were normal and would eventually get better.

The doctor made no mention of my screening when she entered to examine me. I suppose I passed it. Just before she left the room, she said something about Jaycee. With a trembling voice, I then told her about Jaycee’s problems before uncontrollably erupting into an all-out cry. All the hopeful memories I had from being in there for previous visits coupled with seeing all the other moms and babies in the waiting room had resulted in this unexpected tearful display.

The doctor, who was clearly uncomfortable with my outburst, asked if I was all right and if I needed medication. When I declined, she told me to call if I changed my mind and left the room. That was how I allowed post-partum depression to grow and grow into something more serious and untamable.

For about 10 months, I struggled. Initially, I cried EVERY time I was alone. Yes, EVERY time! I didn’t want to leave my house more than I absolutely had to do. I was overwhelmed. I was worried. I was stressed about taking care of a medically complex child.

Finally, I was able to pull myself out of that negative and sad world where I didn’t even recognize myself. It is only through God’s grace that I was able to get to a place where my thinking began to change and I could participate in some social interaction. But 10 months in depression was too long.

This year, we celebrated Jaycee’s 10^th birthday. I spent time reflecting on her birth and all the things the both of us had overcome since then. It was then that God whispered something to my heart about that lie in that doctor’s office 10 years ago. I had never considered what I had done a lie. I didn’t even know the questionnaire would be given to me, so I had not planned to be untruthful. Yet, I was. God showed me that by not answering those questions honestly I allowed the depression to take root and grow. There was no one to monitor me but my husband and parents, who were at a complete loss as to how to help me.

The depression was 10 years ago, and I have rarely discussed it with anyone. I suppose I have kept it a secret for the same reasons I did while I filled out that screening form. I was embarrassed that my emotions seemed to be controlling me. I felt guilty that I was so depressed when I should be nothing but happy to be a new mom. I was too proud to admit that I needed help. I was ashamed that I was struggling with depression as a Christian.

And so, 10 years later I confessed the lie that I made on paper that day and asked for God’s forgiveness. I realized how lying about myself and my feelings contributed to some real pain and wrong thinking that would really take me years to overcome.

I can’t go back in time, but I can learn from my mistakes. I can also encourage others too. If you are struggling in this area, get help. You are not weak. Admitting you need help takes courage and honesty. Denying that you have a problem is not helpful to yourself or your family. God will honor your honesty.