A letter to my son

I am thinking of giving my son this letter on his 21st birthday, which is a couple months away. As ever, I am grateful for this space, where I can process my thoughts and let them simmer, while I mull things over.....

To my son, my first-born child,

When we first met at your birth nearly 21 years ago, I dreamed of a special new life; you, your dad and I, all happy and rosy together. I never imagined the kind of journey we would travel together as a family. We have come a really long way.

I had experienced several problematic health situations within my family, such as a brother with severe depression that emerged in his college years, a grandmother with OCD and hording behavior, a brother-in-law who lived with paranoid schizophrenia. But even though these situations were very large in their lives, they never touched me the way your medical and mental health challenges would.

You were born bright and beautiful, a miracle after a very challenging and precarious pregnancy where I nearly lost you at week 21. Your health at birth was an amazing blessing.

When things began to get rough in your early school years, I made the decision to quit my job and work at home so I could watch more closely the ways in which you needed help. Ever the independent and resourceful child, with a quick, bright mind, I watched as situations at school whittled away at your self-esteem, and soon escapism and protection became your daily goal. Feeling helpless to know how to navigate the systems in place that were meant to guide you successfully towards adulthood, I stood by watching my beautiful child fall apart in front of my very eyes. I felt I was powerless to change how you felt, powerless to make those who interacted with you on a daily basis understand the complex yet magical child you were.

When addiction and severe depression with suicidal ideation made its way into our lives in your 15^th year, we realized your challenges were more than we knew how to navigate. You seemed to be at your lowest low, yet placement in an RTC setting, while helpful in reestablishing you to a place of health, still couldn’t help you manage the need to self-medicate. A frighteningly near-successful suicide attempt was your way of speaking out, but it left us feeling as helpless as ever. Nothing we did ever seemed to bring you out of the roller-coaster of frustration, depression, and self-loathing you seemed to wear daily. We tried our best as a family to love, support, and encourage you, which always seemed to work in the moment, but sooner or later you would always return to self-defeating behaviors. We tried our best to make you aware of how much brighter our lives were with you in it, as we stood by helplessly not knowing what we could possibly do to help you feel better.

Finally, we learned the basis of your illness was caused by a partial complex seizure disorder, where two areas of your brain suffer from microscopic seizure activity. Medication allowed you to process learning in a new way and your brain to function more normally. Therapeutic sessions helped you learn to process your actions over the past several years. Even though you still struggled with a major drug addiction, we could finally see the depression lifting, and finishing high school was finally a possibility for you.

Today is a brighter day. It has been more than a year since we brought you back into our home, and with proper support, you are dealing with your anxiety and addiction in a more healthy, controlled way. Even though I am sure some days are quite a struggle for you, as a family, we have realized the best way to support you is to have you at home with us so you can continue to mature and grow at a pace that is right for you.

21 years ago, I was a girl who thought I knew what it took to become a mom. I was not ready, nor was I equipped to handle mental illness or a co-occurring disorder. I was not able to handle the backlash of community stigma towards behaviors society deems objectionable. I was unsure how to negotiate with a child who exhibited dangerous or self-destructive behavior. I didn’t know how to stand up to an entire school district or a national insurance company to make sure my child’s health needs were met.

Today, I am a woman, I am your mother, and I have learned how to stand up and fight for your rights and needs, especially when you could not fight for yourself.

When you were born, I knew you were different. I was right. Because despite the battle you have walked through personally, you still manage to be the magical person I’ve always known you to be. Despite your medical and mental health challenges which our family has walked through together, you have taught us all how to navigate walking an uphill battle with grace and fortitude, sometimes with great effort, and always with strength.

For you, I am so grateful.

With love,

Your mom.

Recovery Tools

This is me today, however I haven't always been this way. Most every day finds me with a kind heart. When I take care of myself properly, my mind is unstoppably fierce. And brave spirit... well yep, I can call myself that now.

I didn't always have a brave spirit. I was so meek and mild growing up. But I did have one part of me that felt very brave. Once I figured out I could take that part and rely on it, I finally learned that many more parts of me were braver than I thought. Now, I see that braveness can seep into every aspect of my character and finally I am proud to call my spirit "Brave" :o)

In advocacy, I have learned a big dose of being Brave. Once I learned the tools to advocate successfully for myself and my family, my Brave qualities have grown exponentially. Even though I am still working on this in my professional life as an artist, I know in my heart I will get there one day. Of that I am sure.

I have had people tell me I am the bravest and strongest person they know.  I wasn't always like this, let me tell you! How do we get to that Brave Place when we are struggling deeply? My "Tools" are what I use to take me from a place of fearfulness to a place of strength.

How do we get these "Tools"?  

First, we have to put a name to our needs. For me, it was learning as much as I could about my son's disabilities. From there, I did many google searches so I could understand complex terminology and workings of the brain. One thing would lead me to another. Information gathering became the first tool in my tool belt. Even today, I may learn a new piece of information that tags onto old learning. I never waste the chance to stop what I'm doing and check into this new piece of information. Informational gathering takes us from a place of hopeless mystery to the place of knowing.

Second, we have to align ourselves with the right people to help us navigate this new path. I don't take this tool lightly. I firmly believe that in asking, we receive. So, put your desires out there. Name them by speaking them aloud. Write them down, or talk about it with someone you trust. Pay attention to the answers you receive. Answers can come in all forms. Opening a magazine to a page that totally touches on your dilemma is one example. Meeting someone new that is (unbelievably) struggling with your same dilemma is another. Do not cast aside freak experiences to chance! When you ask for answers, you will receive them if you are truly open to finding them.

Third, support groups are your friend. That is were you will meet those people we talked about in Tool 2. Locate support groups that cover your particular situation. Even if you are not sure if it's a good fit for you, go. Sometimes, the group might not cover your exact situation, but someone there might know of a new group for you to try. Other times, you might stumble upon a wealth of information. What is one evening, or 1-2 hours of your time when you could potentially learn so much about how to deal with your dilemma?

Fourth, take a class. This will help you get to the nitty gritty part of the learning about your dilemma. Some classes are free, like NAMI's wonderfully supportive Family to Family class. Other courses might have minimal charges. Contact the website for the cause you are concerned about and ask about any classes they may offer. Consider taking a class offered by your local community college. Can you believe there are organizations that are funded by the government that will pay for you to take a class? Free, people, that means free!

Fifth, don't be afraid to pick up the phone and call. I do want to caution you about saving this step until you have completed Tool 1 (information gathering) and possibly Tool 4 (taking a class). I have picked up the phone and asked to speak to the head of Neuropsychology at a Children's hospital. I have tracked down the top decision maker for my family's insurance company. The most important consideration before doing this is making sure you have full comprehension about your family member's situation. If, for example, they start speaking about a particular brain situation, it would be best that you know a little bit of what they are talking about. You want to use as little of their time as possible, but you want to get your questions answered.

Sixth, speak out. Don't be afraid to share some of what you've learned with others. In our NAMI Family to Family class, we tell our class participants that they are all an expert in what they have had to deal with in supporting their family member. So, that goes for you too. Yes, you. You are an expert in your situation and you can help others with your lived experiences. In my case, I tell people I am always happy to talk with someone who is struggling and help out in any way I can. People helped me when I was first navigating this path, and I was so grateful. It is the least I can do to give back, and help out someone who is just getting started in their information gathering period, or Tool 1 as I like to call it :o)

What tools have worked for you? I'm sure there are so many more. Please post a comment below if you have something to add, so others can hear your voice in all of this as well. And, thank you in advance for caring enough to speak up.

PS. To get your own version of the wonderful print at the top of this post, please visit this link: http://etsy.me/1ZYx4pk