coping

This begins a series as we prepare for the next step in the care of our special needs son. He is being referred for brain surgery in the next few months. To follow our journey, I have decided to express my thoughts about the process through letters I will write to my son. This is the first of hopefully many over the course of this scary and hopeful journey.

Letter 2:

Dear Little Buddy,

We are still waiting for the call to schedule your visit to the neurosurgeon. The longer we wait, the more I ponder the impossibility of this trip. There are so many things to consider; the expense, the logistics, the care of your siblings, and the possibility of being away from home for a considerable amount of time. I am very saddened that your declining health has made it necessary to go to this extreme but it’s not your fault and I don’t want you to feel bad. It can be easy to carry guilt when you need help due to your disease. I know because I also have a disease that has made it necessary for me to ask for help on occasion. I have a disease called Rheumatoid Arthritis and it has changed my life in many ways that mirror how your life has been effected because of your disease, Tuberous Sclerosis.

Since I found out that I have this disease, I have needed to take different medications, some very similar to medications you are or have already taken. One of my medications could effect my vision and I have to it checked every three months. It wasn’t that long ago when we were taking you to the optometrist for the same reason. Although our specific medications are different, I also take an anti-epileptic and a medication that is used to treat cancer in high doses. I look in the mirror and see how the appearance of my own face has changed just like yours did as an infant when you took a medication that I am taking now. The physical changes we both have experienced doesn’t end there, we are both weaker than we were a year ago. I have benefited from a rollator and we will be meeting to fit you for a wheelchair next month. It could all be a coincidence but I think it’s more. Through my struggles, I get a rare chance to understand you more.

It is also through these similarities that I can sympathize with the side effects of your medication, the frustrations when your body feels the effects of failed medications and therapy, and the never-ending rotation of doctor appointments. Unfortunately it also means all of these things double for our family. We spend twice as much time waiting at appointments, twice as much money on medications, therapy, and surgery, and double the worry over getting through each day. Those are big issues for us, but we care about you above all.

We are always thinking about how to make your life a bit easier. It is in these thoughts where I have struggled to help, and sometimes, understand you. You have done things that seem irrational; sometimes you scream, hit your face, beat your head on the wall, or you will hit me or someone else in the family. It wasn’t until I too started to feel quite irrational that I began to understand you. In the last few months I have had to start numerous medications and I didn’t anticipate the variety of side-effects I began to experience. Unlike you, I have a full understanding of what is happening to me and yet I still cried and wanted to shut down. Since you don’t understand your situation as I, it must feel like your life and/or your body is out of control. How can I expect anything but an occasional meltdown or outburst from you? I have nights where I can’t verbalize my own emotions, yet I have expected that from you. I have expected you to do more than I have been able to do myself, and for that my little buddy, I’m sorry.

I am sorry for all the times I haven’t been patient and understanding. I am sorry when I haven’t searched beyond your anxiety and outbursts. I am sorry when I haven’t been a safe place for you to fall. I know I have needed a safe place where I can have no fear rejection or judgement. You deserve the same. It has been hard for me when you have had terrible days and have taken it out on me. It’s hard to be hit or kicked by someone you love. It hurts my heart because I want to spend my time enjoying you, not fighting with you.

Don’t forget that little buddy! You are amazing. I may wish we could enjoy our time together without the some of the bad things that come our way, but I will take you and our situations just as they are as long as we can be together. I am also thankful for my own struggles that bring me a closer understanding of you. It makes me a better person and a better mommy. You have taught me a greater compassion for others and the value of patience. I also promise I will do my best to remember you are doing the best you can despite the mountains that stand before you. You have prepared me for all the difficulty I personally face because you have been an example of bravery. Yes, you are brave. You don’t have to know you are brave to be brave.

Thanks for being my companion in a journey two people rarely get to have together. I look forward to climbing the next mountain……together……because bravery doesn’t mean you have to do it alone.

*d*
(Mommy)

☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆

Dear Little Buddy,

It was about eight years ago when we found out that you were going to come into our family. You weren’t planned, but most miracles aren’t planned. You were born on a beautiful July morning. You were perfect. We brought you home and I imagined a bright future for you but some of those dreams quickly became lost. You were three months old when you had your first seizure and the words Tuberous Sclerosis Complex came into our lives. A few short weeks later and we learned you had also developed a rare and catastrophic form of epilepsy called Infantile Spams. These innocent looking seizures made it a very real possibility that you would experience developmental and physical delays. It was hard to imagine the same bright future as we did the day you were born. We were so very sad and the future looked as gray and solemn as our broken hearts. We had never heard of this disease and here it had changed the way we looked at you.

Yes our hearts were changed. We loved you even more and we were more determined than ever to help give you a wonderful life despite this new knowledge. Your disease was now a part of our family because it was a part of you. You weren’t the same kind of perfect we once thought you were, you were a unique and special kind of perfection. You see, sometimes the world can have a different definition of what perfect should be but that isn’t how we define it. We want to love perfectly with all our imperfections because none of us are perfect. Because you are loved so very much, this letter is now going to be even harder to write.

After seven years, we have been unable to control the seizures that are a biproduct of your disease. Daddy and I have tried very hard to get you every resource possible to help you in your fight. We made big changes when we decided to take you to a clinic that specializes in Tuberous Sclerosis. We did this so you could be in the care of neurologists that are the best at treating others just like you. We have spent the last seven years exhausting every avenue and turning over every stone to control your epilepsy and help you make the most developmental progress possible. You have worked very hard too. You have been in numerous therapies since you were a baby. You have fought hard after every seizure increase and every regression that happened as a result of those increases. We have all fought so hard together for a very long time. I am so sorry that we couldn’t make it all better. This reality makes me sad when I see the look in your eyes during a seizure. You want Mommy and Daddy to make it all better and we can’t. All we can do is be strong and comfort you.

Because of all of this, a big decision had to be made. We know the last few months have been hard for you. Your epilepsy has been making you weak. On school mornings, I see how hard it is for you to walk down the steps and up into the bus. I see how hard it is for you to do so many things that were simple to you just a year ago. I cry at night because I know it’s been harder for you to understand and communicate with me. I see all the terrible things epilepsy has done to my wonderful boy. But I know there is still fight left in you, I can see it. I see your fight every time you get angry and scream in frustration or have an outburst of anger. I cannot imagine how difficult it is to have so many things going with you and to you while having no control over what happens. I try to remind myself of this every time you get angry with me. I try to remember that you need me to be strong because you are still so little and you really have no way of understanding what has been happening to you. I will continue to be strong with you because we have one more fight we need to face together.

We are going to see another doctor in another hospital that may be able to give you another chance at living a life free of the seizures that done so much to you. He is a neurosurgeon. He may be able to get to the root of the problem and remove what is causing your epilepsy. It is a long trip and we may be gone a long time but there is hope. This is just the beginning of a long process and we have no idea how we are even going to make this happen. The wheels are in motion and it began with a referral to this hosptial. There are still a lot more details to work out and a lot of people want to help you little buddy. Many, many people would like to see you seizure free and making developmental progress.

Remember when I said you were a miracle? Well, you are for many reasons. At one time I thought a lot of good was gone from this world. I had lost a lot of faith in myself and in others. Then you came along. In the middle of all the tears, worry, and sadness surrounding your life, many people came to help. Friends and strangers alike reached out to give us hope. When we needed hope and love, someone was always there to show us that there was indeed good still left in this world. You taught us many wonderful things too. You changed the person I am and who I want to become. You make me see that every single day is a gift. Through you, I have a daily reminder that I can only appreciate those things that are here today. I wanted so badly to live in a future made up of my dreams. When you were diagnosed, I could no longer do that. At first I was sad that I could no longer clearly envision your future, but now I see the true blessing of living for today. Your life is a miracle because of how you have changed lives just by being here. You may be small, you may deal with more than most do in a lifetime, but you are capable of doing even more. We may be in charge of seeking the best help possible and doing it in a big way, but in the end, you will have the victory because you will win this fight.

I know I may never read this letter to you. I really don’t know if you would understand. I’d like to think that despite your developmental delays, you do hear and understand more than I know. So we will talk about the next battle we will face together. I will remind you of how strong you are and how much we love you. Your daddy and I would give all that we have to help you. It seems like an impossible journey but we will get there one way or another because you are worth it. Don’t ever forget that. Even when you have had the most terrible day and you take it out on one of us by hitting, screaming, or spitting, or even when you have a terrible meltdown because life is overwhelming, we still love you. We see the hurt under it all and we want to help. No matter what happens, you will always be our little buddy and you will always be loved. Remember this when the next leg of our journey becomes difficult. Sometimes we must decide to take the most difficult of roads because they lead to the most hope. I pray we get there and the best is waiting for you at the end.

Love,
Mommy
(*d*)

If someone were to walk in my house, they may be tempted to say, “Wow! Her house is so clean and organized, she must have herself together!” And that’s exactly what I’d want you to think. The honest truth; what is going on inside of me looks nothing like what I allow to show on the outside. In fact, if I kept my house in the same condition as my mind, I’d be the next to appear on a television show that exposes hoarders. I can imagine a host strolling up to a tiny little door and hyping up the audience at home by saying, “This will be the worst hoarder ever exposed on television!!” The door opens and there I am in my ratty pajamas standing knee deep in the dark and dirty crevasses of my mind. Spiderwebs hanging where a college degree should be, rodents are gnawing holes in the time I take to care for myself, and I’d be balancing knee deep in the garbage of disease. Behind him come all those shocked faces of my family and friends who thought they knew me better.

As sad as that exposition would be, it wouldn’t be too far from the truth. I admit that I am sometimes a prisoner to my need to keep the world around me in order. If I know someone is coming over, even if I know they won’t be coming into the house, I straighten it up. I make sure I include cleaning the house as part of my afternoon routine. I squeeze it in between baths, making supper, starting homework, and all before my husband gets home. I’ll even do it if I am already running on fumes. He never asks to have the house clean when he comes home and he knows the mess I can be on the outside and inside but I still want him to know I am trying. I still want to feel like I have a purpose despite my disease or difficulty.

I have been this way for a long time, way before my son or I was diagnosed. It started with a family saying, “Everything has its place, everything in its place.” I think I was told this every time my childhood room looked like a disaster, and that was most of the time. I had the smallest room in the house and the most junk. Trying to keep it organized and clean was like trying to take out the weekly trash in a lunch bag. No matter how hard I tried, I never could get it clean. I eventually mastered the art of making things look clean when they really weren’t. I learned many tricks to accomplish this task, there was stuff the closet and hurry up and shut the door before it all comes out, shove it all under the bed and leave the comforter hang over to hide the mess, or my least favorite, don’t play with anything. I never really dealt with the mess, I just mastered how to keep it looking like I didn’t have the said mess. I was a kid, I hated getting rid of anything. I am still that way. I won’t get rid of anything that could be of use to me someday (yes, this thinking has come in handy). My house has refurbished decor of all kinds. I use and reuse things when I can. I don’t like to re-purchase something I once owned.

I get my hoarding tendencies honestly. My paternal grandmother is known for her need to collect things she sees as valuable. Anything antique is her specialty. I admit, the older the better when it comes to many items I wish to collect, but with limited funds and space, big or expensive items are not for me. I, like my maternal grandmother, find value in the little sentimental items that are easily collected and easily hid. My attic is full of school papers and artwork of my children that I don’t want to let go of. This spring I bought two extra large three ring binders and filled them with my favorite papers that the boys brought home from school. I filled up both binders right away. I know I should let go of certain items, stop cleaning my house to portray a less than chaotic life, but it’s how I cope.

Everyone has their own ways of coping with life. Some people shop (yes I have been known to do a bit of that when I have been depressed), my husband prays, some people drink, and other shut down. The list is limitless. It is important to cope with the difficulties of life in a healthy manner. Poor methods of dealing with these issues can lead to further destruction. I don’t know of any cleaning anonymous groups out there but if my habits were going to further stress my life, I’d find one. Thus far, I take the hurt or negative energy and channel it through a can of dusting spray or a vacuum cleaner. A can of cleaner is the only thing that has to worry about meeting my angry or distressed hand. At then end of my cleaning rage I can look around and feel a small sense of accomplishment. I know that sounds silly. There are many things in my life that feel out of control; my health and the health of my son, his autism, and our mounting financial concerns worsened by the burden of our diseases so I keep trying to do my best at those things I know I am good at like loving my children, trying to be a good wife, and yes, keeping our home kept nicely. It reminds me that I am still trying my hardest despite my difficulty. Since my job is to be a wife and mother, I’ll do the best I can at what I have been given. The day of concern will come when my house really does look like it should be on a hoarding show because that will be the time I have given up. Sadly, the illusion of a put together life is the only thing that sometimes holds me together. There are so many days when I feel like I can’t give anymore and any bit of accomplishment is a big deal.

I am continuing to work on those areas of my life that seem out of my control. Every day is a new chance for me to clean up those tattered crevasses of my mind and not just my house. Someday, I do dream of having the confidence of being able to open up my mind without fear of the mess inside.

*d*

CrossRoadTrippers

When where we've been intersects with where we're going

Letters to My Son

The Clean that Holds the House Together