Friday, September 11, 2009

Climbing Out of the Pit

I'm going to be gone for a couple of days so I won't post again until Monday or Tuesday. This is going to be the beginning of a series. I feel compelled to tell the story of how I learned to live with an unwelcome guest that came to live in my house. His name is Autism and he showed up to steal a beautiful little boy away from me. This will be the story of how I fought I still fight today for my son and others just like him............

The last couple of days I seem to be reminiscing with other parents of "special" children. People who walk in my shoes friends! God may have allowed Autism to hit my house, but He gave me awesome friends to help carry me down the road.

Anyway, been reminiscing. Going down the long road that I started three years ago. Back to the really scary days.....the first days when the doctor blew up my whole world. I have been thinking of how it felt to hear the words.......your son has Autism. I remember crying in the office.......just staring at my sweet little boy. Waiting for time to pass, for the words to disappear.

I got home from Phoenix and started running. I DON'T RUN! I put my IPod on and started hoofing.....not going anywhere in particular......just running. Crying, and running just trying so hard to run away from my pain. We all know that you can't.

I let myself grieve for two weeks.......

Then, with the determination of a Pit Bull, I dug in. Nobody was going to tell me my boy was lost forever.....nobody! I spent HOURS on the computer and at the libraries. I didn't sleep or eat much. I just searched for answers and cried out to God. I cried enough to fill buckets and kept thinking of how God counted all my He cried with me. Still, I searched in desperation for someway to bring my son allow him to live in our world. It was truly the darkest moment of my life. Even darker than when I had cancer. Black.....Dark.........

I followed this path for about a month. Then, in His time......God began to open doors for me. I met people that pointed me in directions that ultimately led me to Dr. Cindy Schneider. Here was my lifeline. She is DJ's autism doctor and in many ways my friend. I had already put DJ on the "diet", and started supplements before I first met her so we were ready for the long haul........

The point of the story is that I fell in a deep pit. The pit of desperation and despair. Ever been there?? Think we all have. The pit is deep and seems insurmountable. Little rays begin to shine down on you down there in the pit.......rays from heaven. You hold on and reach for the light and stumble many times. Eventually, you crawl out one agonizing step at a time. Hand over hand....dirty, muddy, crying, screaming, fighting every step. Finally, you haul yourself out. You lay on the ground just grateful you made're totally exhausted. Then, the hard part starts. You start living all over again.

Thursday, September 10, 2009


We have all been tested in this recession. My family has been especially hit hard. I quit working three years ago to take care of our son and instead of cutting back we incurred DJ's skyrocketing medical bills and have had to assume tremendous debt. We are even at a point where we aren't sure how to pay monthly bills. Scary times for folks that were once debt free and didn't buy anything until we could pay cash for it. My paycheck often went to weekends out of town, shopping trips, and my savings account. Thank God, Joe had the mindset to save all these years because it kept us debt free until the last year.

Still, through the hardship and pain, lessons have been learned.

I first learned how much I can live without. My car is pushing 120K and I pray that it holds together. Just two years ago, I pestered my husband almost into fits to buy me a new Chevy Tahoe. I am embarrassed to admit that I thought I couldn't live unless he bought me a forty thousand dollar car. I'm SO glad he told me no....the last thing we would ever need is a huge car payment now.

I buy my clothes in Sam's club and second hand stores. I honestly can't remember the last outfit I actually tried on! I don't even buy much to begin with.....mostly I shop for the kiddos. I've learned that being in style is not all it's cracked up to be. My daughter constantly jokes about me being a prime candidate for What Not to Wear!!

Everything, and I mean everything in our budget goes for necessities and DJ's doctor bills. It's so hard to be frivolous when your child needs so much.

Becoming financially strapped has taught me to be humble. I never thought a forty-two year old woman with a Master's Degree would be applying for retail jobs and substitute teaching. I'm not proud, I just need to take some of the burden off my husband. Unfortunately, I am trying to get back into teaching at the worst time......schools just got rid of teachers, and they surely don't want to hire me at a higher pay level than someone brand new. It hurts sometimes because I don't even get job interview calls. Talk about your confidence shaker!! Still, I press on and try to contribute the best I can. I know God will give me the job I'm supposed to have.

I have also had to ask my parents for help.....OUCH! It's easier for me than my very proud husband. I just thank God they have helped us as much as they have. It's not what I had envisioned, but at least God gave me such amazing parents.

I have learned most days to walk in faith. The blind, stumbling in the dark kind of faith. I believe that when you are pushed beyond your limits that is when you truly let go. I can't do this without God........ I just can't. We still have our house, and the necessities. I truly appreciate my friends and family. These are the things I value now on this earth........ These are the things I hold on to in these perilous times.

Tuesday, September 8, 2009

Please.......Remember Me

Parenting a special needs child isn't for the faint of heart. It takes a real warrior to face the obstacles of doctors, therapies, government programs, insurance claims, public perceptions, schools, daily care living tasks and then the actual parenting. Then, you can throw in a husband, and a couple of "abled" children, and be totally at your wits end.

I bring this up because a good friend of mine called me last night and shared a heartbreaking story with me. Anne is the parent of another special needs child. Different disability than my child ........but equally as challenging. It seems that after an incredibly LONG week, she decided to make arrangements to attend a Praise and Worship service at her church. She got someone to watch her three other children and headed off to the service with the disabled child in tow. An exhausting feat all by its self.

She explained to me how moving the service was. The message seemed directed toward her. (I love when God reaches us this way!!) The music was powerful and she really felt God's presence with her there. She shed tears of anguish and joy as is often the case when you have our children. I was so excited just listening to her tell of her experience. Then............

It was time to pray in small groups. Her group prayed for many important things, political leaders, marriages, the church, missions...........but they didn't pray for her. She was there, holding an obviously disabled child in her arms and as she stated........."wiping tears and snot with the sleeve of her shirt." But, no one comforted, nobody prayed..........

Why?? Maybe they didn't see her pain, she didn't speak up and specifically ask for prayer. Maybe, they were embarrassed and felt the situation was too uncomfortable to reach out. I'm not sure why no one spoke up or reached out........I'm just not sure.

I know the pain and isolation my friend felt. I know because I live it too. It is so hard to reach out to others in your community when you have given everything you have just to meet the needs of your special child. Then, you still have to push on to meet the needs of your other children, and husband. There's not much left of you at the end of the day. It can be a very lonely existence.

We are called to serve and serving doesn't have to be complicated and become cumbersome. Serving can mean a five minute phone call.....a positive email.....a quick card in the offer to drive a child to an event........a hug and affirmation that the person really does matter. We all want to feel included and accepted because God meant us to live in communities. We sometimes just need a gentle reminder to step outside of remind those around us that they are indeed important and remembered!

Sunday, September 6, 2009

They Remember What You Are

I often think back to my childhood. This seems to be a consequence of becoming a parent. Most of the time I think of how I wouldn't have ever back talked to my parents or behaved badly. Mostly due to fear of my father's wrath. It is amazing how time can cloud your memory of what a pain in the behind I actually was.........time does that.......clouds your memory.

Sometimes though, I think of the kind of people my parents actually were. They weren't perfect in any way shape or form, but they loved us kids pretty much unconditionally but with many boundaries. I learned how to be a person from my parents.....most especially my dad.

My dad wasn't a man of many words. He was a respected teacher and coach at the local high school. You learned early that your word was a bond and actions always speak louder than words. He knew the meaning of hard work.....he was the oldest of ten children and had responsibility thrown on him at a very early age. He left home to go to college and never had any help from his parents mostly because they were too poor.

You learned from my dad by watching. He put his personal stamp on everything........his job, coaching, the yard work, and his children. Embarrassing my dad publicly was probably the most heinous thing we could do. This infraction incurred the worst wrath! Still today, I think of what I do to make sure that I never bring any embarrassment upon my parents.

Still, who I am is the man I watched. I am honest, and forthright in all my dealings. I don't commit lightly and consider other peoples feeling before my own. My word is the same as a contract and I will overextend myself to make things right. The worth of a day is often gauged by how much I got accomplished and I often expect the same from my children. I feel like my father's spirit walks with me daily helping me be the person I am.

I ran across a quote the other day from Jim Henson. You know, the Muppet guy. Here was someone who took imagination and hard work, shook it together and created brilliance. He said, "The attitude you have as a parent is what your kids will learn from more than what you tell them. They don't remember what you try to teach them. They remember what you are."

What am I? Do I yell to much?? Do I make enough time to listen?? How often do I lecture? The quiet simplicity of my father reaches to me at these times. I learned so much in the silence.....just watching.

What do our children see in us.....beyond the lectures.......when we actually live life? How have we served in our role as parents, teachers, guidance counselors, and cheer leaders? I can't answer this one yet. I am thinking today though of how my actions are interpreted by my children. I hope they see me as God's servant and someone who lived with integrity.......only time will tell.