Darkness

Have I mentioned I am super optimistic? And happy. Extremely happy. People have said that about me my whole life. And it is definitely an expectation. That I be happy. I’m okay with that. Most of the time. I get it. I really appreciate people being predictable. The people I am closest to in my life are steady. I pretty much know what to expect from them. I am not typically close to someone who is unpredictable…. I never want to have to ask myself, “What version of so-and-so am I getting today?”

Growing up my parents called me their “sunshine girl.” They gave me a sunshine charm that I still wear around my neck to this day. I loved making people laugh. I was notorious (and still am) for giving my sweet dad “the heart attack laugh.” I mean I just really knew how to get him laughing. Hard. He would laugh so hard that his face would turn bright red and he would struggle to breathe. My mom would be like, “Cindy, really, stop! Kent! Stop laughing!” She would get so worried which would only make the situation more hilarious.

My whole life this is what my mom does to me…. We will be in a group of people. There will be an awkward silence. My mom will say (so that everyone can hear), “Cindy, be funny!” Really mom? I am not a stand up comedian. However, I do have some classic “Cindy Stories” that will usually do the trick. I really do love to laugh and make other people laugh.

I think you get the idea. I’m happy. I am most comfortable being happy. It is my homeostastis.

Then, came the darkness. It took me by surprise. I wasn’t prepared. I share this because I hope it helps someone else. Or I hope it helps you help someone else.

It’s a tricky topic. Special needs. It is sort of a blanket term that applies to so many different situations. When you see a person with special needs you probably have a lot of questions. Maybe you feel sorry for them. Maybe you don’t. Maybe you are afraid. Maybe you are endeared. I’m sure you have seen the parents of these special people. When I see a young mother out with a young child or baby with special needs it takes my breath away. I want to run over and hug her…. and that precious child. My guess is, that mama is struggling. Really struggling.

My pregnancy with Caleb went relatively well. I did go into pre-term labor around 30 weeks but the doctors were able to stop it. I had to sit as much as possible for the remainder of the pregnancy but I carried Caleb to term. He weighed 7 pounds 5 ounces and scored perfectly on the Apgar. Family and friends immediately came to visit and it was such a sweet time. Until Caleb was 3 hours old, then my nightmare began. He was blue. The nurses and doctors rushed in. They tried to give him blow-by oxygen but it wasn’t enough. They transported him by ambulance to Children’s hospital. They wouldn’t let me go. I had just had a baby only hours before. I felt like my heart had been ripped out. They agreed to discharge me the following morning (against their better judgement they said).

Ryan had a week off of work and we spent every day by Caleb’s bed in the NICU. It was a really sweet time. Caleb seemed to be improving and we both felt optimistic. When Ryan went back to work I would go by myself to the NICU every day. It definitely got harder but I was still mostly ok. I do remember breaking down and a nurse comforting me. I can still see her sweet face in my mind. I think she knew it was about to get a lot harder for me. Finally, Caleb was discharged after 2 weeks with no answers. He was able to breathe without oxygen and could eat without a feeding tube. They sent us on our way but with a host of follow up appointments with specialists. I wasn’t worried! We were free!

Once we got home it definitely wasn’t easy. Caleb wasn’t gaining weight like he was supposed to and he cried all the time. After a “failure to thrive” diagnosis from Dr. Glover we started supplementing with formula and he gained weight. But he still cried. A lot. And he slept very little. But it still felt very much like typical things you hear about newborns. I figured out that water helped. If I put him in the bathtub he would stop crying. So guess where he spent most of his time?

We had our appointments with all the specialists. Neurology, Cardiology, Opthamology, Genetics, ENT, Orthopedics, etc. No one could really give us an explanation as to what had happened just after Caleb was born. So, I chalked it up to a difficult delivery and just “one of those things.” Caleb was crying less. In fact, he was happy most of the time. He was eating, he was sleeping. We breathed a huge sigh of relief.

Then, we started to notice something. Caleb was a little too chill. At church, there were several babies born within a few weeks of him. At first, they were all doing a lot of eating and sleeping and Caleb was right there with them. Then they started rolling over. From front to back. Then, from back to front. Caleb laid flat on his back. Happily. Then, they started sitting. Caleb laid flat on his back. Happily. Then, they started crawling. Caleb laid on his back. Happily. Then they started walking. Caleb laid on his back. Happily.

Somewhere between the sitting and crawling we began to get concerned. Caleb was nowhere close. We started therapy. All the therapies…. speech, occupational therapy, physical therapy. I started to feel the darkness creeping in. Little comments that the therapists made would play in my head. Then, came the public comments. Everywhere I would go people were starting to say things. They knew Caleb had special needs and of course assumed I was at full acceptance. I wasn’t. I wasn’t even close. I remember one time in particular. I was sitting in the waiting room of an oil change place. This woman came up to me because she knew Jeanie (Jeanie is a whole other story but the short version is that she is an extremely close friend to both my mom and I). So, she asked me how Jeanie was doing, then she started talking about Caleb. I will never forget it. I was holding him on my front and had him turned around where he was facing out. She grabbed his feet and started talking about how special they were. Then she asked me if I was familiar with the special needs program at First Baptist Concord. My head was spinning and I couldn’t breathe. I had to get out of there. I ran to my car, buckled Caleb in his seat, sat in the drivers seat and sobbed. I mean how dare she? Then, I got home and Jeanie called. The lady had called her because she could tell she had upset me and wasn’t sure why. I made a decision right then and there. I was done. I was done with people. They just didn’t understand. I decided to limit my circle to family and very close friends only. I still went to church, but I didn’t want to be there. I tried my best not to look at those show off babies. I tried not to talk to their parents. I tried to get in and out as fast as possible.

The darkness grew and grew. I couldn’t eat. I couldn’t sleep. I couldn’t think. Sometimes I couldn’t breathe. There was a constant screaming in my head. I had to keep going. I felt like a robot. We had a doctors appointment or an orthotics appointment or a therapy appointment every day. Sometimes several in a day. Or I was on the phone with insurance. It was just so much. My heart felt heavier and heavier. I felt more and more hopeless. I felt so much guilt. This had to my fault. I was hurting more than my heart could handle. It was breaking.

I’m not sure how other people perceived me during that time. I know my family was worried sick, but I tried to hide my tortured mind from others. I wonder if they were fooled? Probably not. There are people who stand out to me during that time, they loved Caleb or me the best way they knew how. I am forever grateful for that. Most of them still keep up with us today.

So, how did I come to acceptance? Well, it was a process that I don’t remember super clearly. But, I do remember the moment of complete and total acceptance. Caleb had just turned 3 and Silas was a few months old. Our therapists recommended that Caleb attend Fort Sanders school since they have a wonderful 3 year old program for kids with developmental challenges. So, we had to have a meeting before he started. I dropped Caleb off with Aunt Sassy (my sweet sister) and I took Silas with me. It was my first ever IEP (Individualized Education Plan) meeting. There were at least 6 people sitting around the table when I walked in that room holding tiny baby Silas. I was instantly overwhelmed. Caleb had been tested prior to this meeting. They each launched into their specialty area and explained his scores. My head was spinning. I couldn’t understand exactly what they were saying but I knew it wasn’t good. I knew the scores were very low. Then one of the ladies started using the term “special needs” in reference to Caleb. I started bawling. I mean sobbing. Ugly crying. It all came pouring out right then. All the guilt and fear and sadness. Those 6 ladies just sat there and stared at me. Horrified. Then, Silas who had been sleeping soundly in his carrier started crying. I picked him up and we cried together. That was my moment. Full acceptance. I left there feeling like a new woman. It all started becoming very clear very quickly. God was going to work all this together for my good.

I am sure my life and heart and attitude did not change in an instant, but looking back it feels that way. It was like I got my ministry lenses. I remembered that my life belonged to the Lord and I had all these opportunities to shine my light for Him! I became excited about doctors appointments and therapies. What an opportunity! I tried my best to shine my light so bright. IEP meetings… well, they have never been my favorite but I definitely bring cake pops to each one. I do my best to bring the joy. I think even IEP meetings can be used for God’s glory.