View profile

INTRODUCTION

The day was finally here. We were moving Skyler, my nineteen-year-old daughter, into her dorm at a small private school in the Midwest. After six hours in the car, we finally arrived.

Skyler, my bright, beautiful daughter, beamed as she inspected her new dorm room. My husband and I looked at each other as tears welled up in my eyes. Truly, I couldn’t believe we were here. Skyler was our firstborn. At age nine, she was diagnosed with a pervasive developmental disorder not otherwise specified (PDD-NOS) on the autism spectrum. On paper, Skyler never should have made it to college. Yet we were here.

We were really here.

As my husband and I raised Skyler, we had the desire, like most parents, to set her on a course for success. For us, this included continuing her education after high school. To be there, in that dorm room, helping her unpack her books, posters, and a boxes of mementos from her bedroom at home, was like a dream come true.

This dream of taking my daughter to college always seemed so far away; at times, the road was so bumpy. Along the way, I often wondered if I would make it. When I say “make it,” I mean I wondered if  I was doing a “good enough”  job.  I once heard from a wise woman that most of us as parents do a “good enough” job, and our kids will turn out just fine. I remember hearing this and thinking I wanted to do better than just “good enough.” I decided one day, when I was sitting in a special education meeting for my daughter, that being a passive participant in this process was not enough; I decided I needed to do more.

In my quest to do more and understand how to help my daughter, I also questioned my own purpose. I had been a stay- at-home mom for about fifteen years at this point, but really questioned God’s plan for my life. As the mother of four children, two of which were diagnosed with special needs, it was easy to feel lost. I found a training program to become a life purpose coach, and decided to fly to Missouri, my home state, and train with an amazing coach named Karen to pursue a certification in life purpose coaching. Karen happened to have background in special education; as we were looking at women that would be my “ideal client,” my heart was drawn to women raising children with special needs.

As I started to tap into my “why” for helping moms like myself navigate raising children with special needs, I realized that so much of my journey had been on my own. I felt I was looking for people to help me, and they were hard to find. I decided that in order to be of  the best service to moms, I needed to really understand the special education maze. In 2011, I started a three year master’s degree program in special education, and I graduated in 2014.

With my diploma and certifications in hand, I realized that I had no more excuses or roadblocks as to why I was not ready to help moms like myself help their children with special needs thrive not just survive. I also knew that God expected me to use my gifts and story to help others. Today, I get to walk alongside moms as their private coach and guide them as they hire me for a six-month period to help them navigate their children’s special education journeys, and their own journeys as mothers and as women. What I have realized is that moms underestimate the power their examples set for their children. In my studies to become a teacher, I was taught a great deal about how children model what they see.   At this time, a light  bulb went off in my head: if moms model an inspired and hopeful life to their children with special needs, won’t these same children go on a live their life in the same way?

As I was deciding on the name of  my business in 2015,  I thought about many of the women I have coached and my own journey, as well, with special needs children; I realized it was like running a marathon. Every day is a choice to stay in  a place of feeling inspired and hopeful. We are all yearning to move from hopeless to hopeful everyday. This book is our story, but it is also the story of every mom who has to watch her child struggle to overcome a disability and find a way to thrive.

  

CHAPTER 1

Idealistic Expectations

I have often thought, if you could begin with the end in mind, how easy life would be. If  we had known, when I was pregnant, even, what would happen, “Great! This child is going to go to college!” then we would have known that everything would work out. If we could just begin with the end in mind, all the worries we’d have when we’re pregnant, or getting ready to take on raising a child via adoption, all of it would be alleviated. All that stress. That day, taking Skyler to the dorm, moving her in, and seeing that smile on her face meant more than anything. Skyler hugged us goodbye, and with her hug I felt the words exude from her body: “I got it. I got it. I’m ready. I got this.”

When I look back to where I was almost nineteen years ago, when I first found out I was pregnant with Skyler, it amazes me to see how far I have come. Despite all that she has been through, this is one child who is doing what she’s doing against all odds. On paper, Skyler appeared like one big human obstacle: “She may not go to a regular school. This is wrong with her. That’s wrong with her. She may not ever do this. This. Her IQ is this. She’s average. She is showing delays. Blah, blah, blah, blah, blah!” That’s what it was—blah, blah, blah, blah, blah. Had I embraced those words on her official diagnosis report as who she really was, I would have just shut down.

Our minds are often protected. We don’t see the end. But if I had seen the end, things would have been so different. In some way, for me, it’s God. In some way, I was given a glimmer into what her life would be because I never gave up. I never believed how she looked “on paper” would be her reality.

Even from the outset, as a pregnant twenty-six-year-old, I was optimistic. I had been married three years. Once we started trying, I became pregnant right away. Everything worked out great. Everything worked out the way it was supposed to. The pregnancy was easy. I gained a lot of weight. I was really, really, really fat, and it wasn’t anybody’s fault but my own because I ate a lot of steak. I did everything in routine order. I had my ultrasounds done regularly. It was 1996, so I had the alpha-fe- to protein test done, a common test for the time to measure the alpha-fetoprotein levels in the mother’s blood. I had this test done around twelve to sixteen weeks, and they found out that my levels of alpha-fetoprotein were low. I learned that high levels on the test indicate neural tubal defects like spina bifida and low levels are indicative of chromosomal abnormalities. My obstetrician knew that my husband was in his residency and he knew what was going on. He informed us that we could have an amniocentesis done to see if there was a possibility that our child may have Down syndrome. So I allowed myself to keep my idealistic expectation that everything was going to be fine. Everything was going to be great. There wouldn’t be a problem. We went ahead with the amniocentesis, which was very stressful. They inserted a rather large needle into my stomach. I had heard of women spontaneously miscarrying during an amniocentesis procedure, so I was a little worried. It is a risky thing to undergo. But I did it. Then we waited for two  weeks.

To me, in my mind, everything was fine.

My idealistic expectation kept me in check, yet still the thought that the risks might apply to me entered my mind. Why do we embark on these things? Why are we willing to take chances like this? Was the craving to know so strong that I couldn’t just be patient and discover how my child would be once she was born? I believe it has to do with entitlement. We live in a world where we feel entitled, entitled to know what we want, when we want. If we want to know whether our child will be born healthy or not, then we take the steps to find out. I knew we were entitled to have a healthy child. That was my expectation. “I will have a healthy child. Everything will be great. It’s going to be really easy.”

At four months, I still felt everything was fine. I was right; God answered our prayer and we found our unborn child did not have Down syndrome. Everything was good. Heading into my eighth month, however, I was put on bed rest. I quit working because I had a lot of pitting edema and swelling. I was just one big, swollen, miserable woman.

It was fun, I suppose, to be off work, anticipating the birth of my child. The due date of September 25th  arrived,  and no Skyler. Ten days later, October 5th, I still hadn’t given birth. My mother flew in from Arkansas to help me through the delivery and first days. We scheduled an induction. The night before I was to be induced, we went to a movie. I was still so entitled, thinking, “I want to go see a movie. Everything is fine. Nothing is going to be wrong.”

The next day, I went in, and they induced me. They had to give me Pitocin, as I was clearly not going into labor on my own. By then, I was ten days late. Skyler just did not want to come. Even though they put me in labor, my body seemed to just…stay. I was dilated about three centimeters, and I stayed like that for a while. Still, Skyler was not coming out. A day and a half of labor, no Skyler. Finally, they decided to stop.

“You know, let’s stop,” my obstetrician told me. “Go eat a steak.”

I was worn out from a whole lot of labor with no result. My husband went to get me a steak. It was so good. I felt en- titled again. I felt that everything was going to be good. I ate so much steak during my pregnancy, and there I was, over two hundred pounds, eating steak in the hospital.

The next day, we tried again. Again, they gave me the Pi- tocin. This time, I delivered Skyler. She weighed 8 pounds, 12 ounces. She was 22 inches long. She swallowed some meco- nium at one point in the delivery (swallowing her own feces), which could have been one area of risk. Nothing came back on her Apgar score (an indicator of overall infant health) that was abnormal. Everything came back normal. She looked good. She was normal. She was fine. Everything looked good. She was a great baby. I brought her home.

I thought about this again, later, when we found out there was going to be a struggle with Skyler. My journey was different than that of a friend of  mine, whose child was born with a syndrome that caused severe physical disabilities. She and I talked about this often, that my child’s disabilities ended up being something unseen, so much less obvious than the dis- abilities of  her son.

My story ended up being different than the one my ideal- istic, twenty-six-year-old self, with a beautiful baby, imagined. It could have been harder, but looking back, I felt guilt that I thought everything should be okay because for some reason I was entitled to it, because I believed I was a good person and I should have a healthy baby. I felt guilty that I thought Larry and I were people who did all the right things, and that we de- served this healthy situation.

I learned not to beat myself up for feeling that way. I think it’s part of human nature to feel that way. Now, as a coach, I encourage my clients not to beat themselves up for the expetations they have. Those expectations are often what help get us through times that are challenging. Let’s face it; pregnancy, in and of itself, is challenging. We enjoy it, we go through it, we have all these emotions, then we have this baby, and it might even be right at birth where we see that our child has a physical disability. Missing a limb. Blind. Born without an ear. Down Syndrome. Whatever it looks like, for some of us, our idealistic expectations are crushed from day one. For others, like myself, my expectations became transparent when Skyler was between the ages of two and seven. Don’t sweat that expectation, and don’t feel bad that it was idealistic.

Disabilities and special needs do not discriminate. This can happen to anyone. If we are blessed enough to become parents, whether biologically, through adoption, through fos- tering, or however it looks, and we happen to have a child  that doesn’t fall within our expectations, it has to be okay. It  is where we were in that particular moment in time. It’s okay.  I just wish someone had told me that at the time, because the guilt I felt later was really, really tough to deal with. I just kept beating myself up for the expectations that I had.

It was helpful for me to embrace and recognize that those idealistic expectations are part of the process of becoming a mother. However it is that we become mothers, our expectations define and shape the type of mother we are. At the end of the day, I wouldn’t do it any differently. I’m glad I was idealistic. I’m glad that I didn’t navigate my pregnancy, my journey into becoming a mother, with fear. Had I navigated it with fear, I wouldn’t be able to look back and say that I enjoyed  my pregnancy with Skyler. There’s nothing I would undo. I am so proud that I had her. At the end of the day, she is who she is, and over time, my expectations were met. I don’t think I am alone in feeling this way. I know so many mothers who have told me there is nothing they would have done differently when it came to their children. At the end of the day, we’re talking about our children. No matter what that child looks like, we’re thankful for the gift. For me, this gift has helped me become a better human being. Maybe the gift didn’t turn out to match the idealistic vision I thought I was entitled to have, but it was nonetheless a gift. If that idealism got me through my pregnancy or, later, Skyler’s diagnosis, it’s okay. It is what it is

Subscribe

---

The author hasn't added any updates, yet.