We are in a place called Hope

"Momma, where are we?"

This young voice comes from the seat beside me. Raw with curiosity, wanting to understand the journey. I appreciate that today the question is where are we instead of are we there yet?

"We are in Rankin."

On our way to yet another Dr. appointment. One where we are to discuss recent medication changes and how they are impacting behavior. Which has been atrocious for the last three weeks.

Trepidation grips my heart as we search for new ways to help my son grow. Am I making the right decision? Will I be able to reverse this if it isn't the right path for us? What if this leaves a lasting scar on his personality? My inner dialogue often runs away from my rational mind as we determine the best way forward.

Yesterday, at an IEP meeting, the entire team propped up a recent decision we've made that I feel is negatively impacting behavior. It is so easy to second guess myself, to think the decision was wrong. Especially when for the fifth day in a row I'm taking a phone call from the school reporting aggressive behavior towards staff. Maybe we should just quit and go back to the way things were. Reassurances are helpful. But today's meeting with the Dr. will be the gauge I use to determine if I am correct or not.

The visit goes well. We are making good decisions; maybe the problem lies elsewhere? Maybe there is an undiagnosed anxiety disorder affecting his behavior. We walk away with two new therapies to try and a referral to a Carle Developmental Pediatrician for an anxiety diagnosis.

"Mom, where are we now?"

"We're in Mayview, heading to Dairy Queen for Supper. We are going to head home after that."

"Oh great! I love Burger King!"

Yes, son, you do. He ate like a champ, (at Dairy Queen mind you,) until he got a response he didn't like. At which point he turned to me and spit in my face. I don't know how, but I reached for a napkin, wiped my face and stood without reacting. Darrin reprimanded and demanded an apology. An apology that would not be given. We walked to the car. I told him he hurt Mommy's feelings with his behavior. He was sorry. He never apologized, but he was sorry.

"Mom, where are we?"

"Just outside Ogden."

For the next 15 minutes, my poor sweet child babbled in the back seat trying to win me back. I was silent, my hardened heart was closed. I could feel myself not letting him in, but because my bruised ego demanded the words "I'm sorry" instead of this war of attrition he was now waging I stayed quiet.

"Momma, where are we now?"

"We are in a place called Hope."

Those were the words. Those were the words, uttered by me and not him, that brought my walls crashing down. A factual statement about our current location with so much more meaning about our current situation. I started to cry.

"What's wrong momma?"

"I'm sorry I was so upset with you about what happened at Dairy Queen. We all make mistakes sometimes buddy. Can you forgive me for not handling that differently?"

"Of course momma. I love you."

We are in a place called Hope. Some days we just need reminding.

We've come a long way

This morning, I sat down to read previous blog posts, hoping for some inspiration. For me, writing is a form of therapy that money just can't buy. When I see issues in black and white, it allows my mind to organize them, debate them, see different solutions.

As I was looking back, I reread my I would give him everything I have post. I sat at my desk and cried at the raw emotion of that day. It was such a different time for us. My poor son had little control over any aspect of his life or his behavior.

Just before I had written that post, we made a decision to change neurologists. We felt like we weren't being helped, and knew we had to do better for our son. It was the best decision we could have made.

The new doctor listened to our concerns about certain medications we had tried. She scheduled a critical test in such a fast manner I had to pinch myself to believe it was really happening. And when we got the results, which were not what we were anticipating, the response from the Dr. was swift and effective. The medication changes were implemented in a matter of days, not months. The switch was not without its trials, but everything happened in such short order, we were dealing with his changes in a few days time, not weeks or months.

And the changes in him have been nothing short of miraculous. His brain has been reintroduced to its natural curiosity; his desire to learn and inquire has been reawakened. He's asking questions like "How do you spell Coco?". And he remembers how to form the c and o without any assistance from me. He constantly has a marker in his hand, drawing and writing his name. A short 6 months ago, you would have thought he was deathly allergic to any writing utensil. He actually asked me to read through site words the other night. HE ASKED ME TO READ SIGHT WORDS. And he didn't fuss, whine or complain one time as we went through them.

As I prepare for our IEP placement meeting tomorrow morning, I must remind myself of how far we've come. Because tomorrow, I must go into a room of professional educators and listen to them tell me that he has not come far enough to be successful in the public school setting. They do not have the resources to accommodate his needs. And I will remind myself he is the perfect version of Sammy; he is performing at the exact level he is capable of at this moment. I cannot ask for anything more.

Bills, Bills, Bills

My son has considerable medical expenses. Between appointments at the neurologist, tests for his epileptic condition, appointments at the ENT, tests for his ears, appointments at the developmental pediatrician, his appointments with our general physician, the inevitable yearly emergency room visit, and his medication, we are going broke.

And we have insurance. Pretty good insurance by today's standards.

Sammy is at $5415.05 out of pocket on our last explanation of benefits. That's right, out of pocket expenses for medical care. And it's only October. It doesn't seem to matter how much we plan for it, towards the end of the year it always hurts. And that doesn't include any visits for Darrin or me.

The medical bills are always the highest, however, like all of you know, just living racks up its own set of bills. Winter is always a slower time for real estate, so we've tried to save through the summer. But as I'm writing checks today to Carle, Rush, and Christie Clinic, I find myself wondering if we have enough to make it through. And I'm nervous because as Darrin is starting a new position in two weeks; that means a whole new insurance plan, with a new deductible, and new out of pocket maximums. Ugh.

I can't imagine what people less well off than we do about medical bills. I am not starting a political debate here, but something has got to give.

A Full House

My sister and her family have lived out of the area for the past 11 years. Joe, her husband, was active duty Air Force. So not only were they far away, they were regularly moving. They have spent the last two years in Hawaii. The cost of flying my family out to see them was quite prohibitive. And as we couldn't drive, that meant we saw them only when they were able to come home. And Joe stayed behind. And I had to share them with everyone else.

I didn't realize how much I missed my sister. Life has taken a toll on my psyche ever since Darrin and I moved to Florida. I don't know if it was my physical location or the absence of my family that did it, but I've battled ugly demons ever since then, even once we moved back home. Once I realized I couldn't handle life on my own and asked for help, things got better. Just not quite right still.

Being the mother of a child with special needs brings its own set of challenges. That has been my biggest battle these last couple of years.

But this year, the end of May in fact, Suzy and the girls moved home. They, of course, didn't have a house on the mainland and have been staying with me. Joe followed them three weeks later. There have been eight humans, three dogs and two cats living in my house for the past month. And I don't think my life has EVER felt so fulfilled.

There have been minor hiccups in the road, but that is to be expected when so many personalities co-mingle in such a little space.Things have gone so much better than I thought they might, I'm truly shocked it hasn't been harder. Kids, of course, are so resilient. I knew the girls would adjust quickly. And Sammy has never been so alive, he absolutely loves having his cousins here. Suzy has always felt at home in our house, I knew she would adjust too. Joe has always been welcome, but I feel this is the first time he has truly enjoyed staying with us. Maybe it's the lack of worry about a travel schedule. Maybe it's the knowledge that when they do leave us, they will be a short two-hour drive away.

I don't have a single answer as to why life feels so perfect right now. It's a mixture of all the good things going on. But I certainly cannot dismiss the impact my full house has had on my mood. My world feels whole once again, and my soul is at peace. I don't worry or feel (selfishly) jealous when they visit other family members. And when they close on their house and leave us, they will still be so close we hope to see each other regularly, not just once a year. While I know there will be a number of adjustments to be made when they leave, I can't help but feel like my life is permanently better for them being here now.

Graduation

My second child is graduating. In twenty-four hours time, I will be the parent of a high school graduate. Yikes.

Funny thing about this, I have only been a parent for six years. I often joke upon meeting people that I'm an adoptive parent and my first child is six and my second child is eighteen. It usually takes a minute for them to get it, but it always elicits a chuckle.

Bringing a teenager into our home was a rather difficult decision to come to. The circumstances were complicated, to say the least, as I imagine it is for any teenage child who finds themselves in need of a new home. In the moment, you feel like everything will be ok. But going from the mommy of a three-year-old to parenting a fifteen-year-old girl was quite an eye opening experience. Most parents are allowed to grow and adapt their parenting style right along with their child. We were thrown into the deep end.

In her defense, Jess was a VERY, VERY easy teenager. She is graduating as valedictorian of her class. I wish I could say I had something to do with that, but the reality is, it was all her. She was always driven to keep straight A's. Maybe a sibling rivalry thing, Chelle was valedictorian so nothing less would suffice. She is loyal to her friends, but if they wrong her they are out of her life. When we talk about various teenage girl issues at home, Darrin uses a pop culture phrase that sums it up pretty well. Jess and I always laugh because, usually, it is a spot-on assessment of the situation. And she understands in one statement that she is too caught up in someone else's drama.

But in this period of great import in my daughter's life, I can't help but question if what I'm doing is enough. Would things be different for her if her early life were less crazy? The answer is yes, they would be different. But every bad situation, all the neglect, the abuse, every DCFS intervention, it all made her who she is. It created the strength of bond between her and her siblings. It gave her a caring heart and made her want to help others. It made her a fierce fighter, which has allowed her to create the life she deserves. There are times I wish with every fiber of my being I could have shielded her from the bad things that have happened to her. But then she wouldn't be who she is today.

So we love her. We love her the way we feel our child should be loved. We can't change the past, but we hope we help her see the value of family. And help her know there are people she can depend on in her life, no matter what happens, especially as she takes her next steps into adulthood.

Grace

How many of you have ever felt that, despite your best efforts, you are still inadequate in some way shape or form? How many of you try with all your might to make everything in your life work, yet still fall short? I often con myself into a delusion that I have everything together.

In a former version of myself, when life proved me wrong, it would derail my mind for a day or two, sometimes longer. I would wallow in a pit of self-loathing over the fact I screwed up. Or that the world was against me; what other explanation was there for my bad "luck"?

As I get older, I have realized that I quickly forgive everyone in my life for the mistakes they make. When we were younger, my sister and I held epic grudges, forgiveness simply wasn't part of our relationship. Thankfully that has changed over time. Everyone makes mistakes, and it is simpler to rectify, forgive and move on than it is to hold onto the wrong that occurred. Why do I have so much trouble forgiving myself when I make an error?

I tend to ruminate on issues that arise in my life. What if I had done this, would it have changed the outcome? If only I had said XYZ instead, maybe they would have reacted differently. The worse I feel about a situation, the longer it lingers in my mind. It is a form of guilt I carry, that I couldn't right the wrong, couldn't solve the problem.

A technique I try to employ is to think of the issue as a physical entity. A box, so to speak. And when I find myself being tortured with the what if's of a situation, I remember to take the box and set it down. I don't lose it, by any means, but I set it down to revisit it later. I must force my mind to stop thinking about it. And it works. When I focus my mind on other things instead of my problem, I always find the resolution the next time I pick up the box.

A dear friend once gave me this perspective on life: Our bodies have not evolved at the rate of our technology. The human form was never intended to sit at a desk, or stare at a screen, or be in five different places at once. We subject ourselves to unrealistic demands that our species isn't prepared for. It might be a little exaggerated, but it has helped me through a number of tough times.

So when my human mind forgets an appointment, or says the wrong thing, or unintentionally hurts a friend, I must apologize, right the wrong, and forgive myself with the same grace I bestow upon others.

I would give him everything I have

To say this year has been a struggle is an understatement. I'm not sure I could survive outlining all the details right now. On days like today, I continue to play out this idea in my head; I would give him everything I have. But....

I would give him all of my attention. He would be my focus, every moment we are awake. Often even while we sleep. This is not realistic; I have responsibilities, I work, I have another child, I have two dogs who help keep me sane. I have a husband who is most often the one who is neglected. I have extended family who doesn't always receive my attention. I have friends I see too little of. And really, all of my attention does not help him.

I would give him an education. I would learn how to teach him the things he needs to know. To read, to add and subtract, social stories, our history, to sing, to paint. But right now I am not capable of doing that. It would take much instruction for me to be proficient enough to educate him.

I would sell everything I own; all of my worldly possessions. I would buy land and move us to some remote location. It would be just us in nature. This is probably the most tempting of ideas, shielding him from the outside world he has so much trouble operating in.

I would give him all of my time. I would give him every second of every day. I would quit my job, relinquish my real estate business and give it all to him. This is unhealthy for both of us, but I would do it if I thought it would make life ok for him. But it won't. It would simply further isolate me from the rest of the world and it WOULD NOT HELP HIM.

Today was a rough day. The days like today in my life often drag me down and make me wonder what I could do to fix things for him. But I can't fix it. I can't fix him. So we continue to adjust his medication. We continue to struggle through therapy, we continue to struggle through school. We continue to try to keep friends and keep socializing him. And when kids on the playground look at him funny when he is so much slower or he behaves differently or badly, we THANK THE GOOD LORD he doesn't get it yet. And on days like today, I have to remind myself that even though I would give him everything I have, that isn't the answer for either of us.