Letters to My Son

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.

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Letter 2:

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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.

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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*)

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Confessions of a Special Needs Mom

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When my children were born, I wish I was also handed a guidebook to each one. “It’s a boy and here is the complete guide to (insert child’s name here).”  The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child. No doubt my special needs child would need at least three manuals. One for his primary diagnosis, one for autism, and one for epilepsy. I would also need some additional emergency booklets labeled, “What Kind of Seizure is This?”, “Why He Won’t Eat,” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist. Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my special needs child. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard to for me to be honest about the mistakes I have made as a parent.

I have made assumptions on the behalf of my child. There have been times that I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist that he does something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.

I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know that I am strong enough to handle whatever might happen.

I have underestimated his abilities. Sadly, I had already determined that he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations and he can independently write his name.

I have played out his worst case scenario. Instead of thinking that he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can but again, I should not set limits on his potential.

I have distanced myself from him. I know this is normal but I have taken his outbursts toward me personally. I frequently forget that he is at the mercy of his disease and the side-effects of multiple medications.

I don’t always let him fight his own battles. I am guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.

I talk about him as if he isn’t in the room. This is something that I promised myself I’d never do. I can’t assume to know that he does not understand what I am saying. I have to be careful not to make him feel like we are not including him in conversations.

I have not always been patient with him. Patience comes with practice and I have had plenty of opportunities to practice it.

I also have failed to be consistent with the way I handle things. I have not always stood my ground when he demands something in an inappropriate manner.

He needs structure and I have not always provided it. Sticking to a routine is hard for me. I have three other children and my special needs son sometimes feels like two kids rather than one.  It is easy to get overwhelmed.

I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what is necessary.

I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.

I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.

I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase or we do a medicine change and he regresses. It is hard to keep trying when we have to keep going back to square one.

I have failed to see the bond our difficulty has formed. Adversity really does strengthen a bond. We have been through a lot together and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.

I have been a “helicopter” mom. There are times that I would sit on his shoulder if I could.

I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t raise a special needs child. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.

I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.

I have to keep reminding myself that his age on the outside does not match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.

I am overly emotional. I know it is hard for other people to understand why it is a big deal when he independently wrote his name or put together a complete sentence but it is for us. Learning is often an uphill battle for him and we celebrate his victories.

My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly, that may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means that I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder, and give him the best of me.

*d*

Life’s Sucker Punch

Have you ever been hopefully optimistic after a long line of difficult days? Some days aren’t easy in my home.

My youngest son has a rare and incurable disease. He is multi-disabled and suffers from a number of different issues because of his primary diagnosis. He has been having a number of good days lately. He has adjusted well to his first year of school and has been gaining ground developmentally. Two of his many diagnoses are Autism and intermittent explosive disorder. Needless to say, he is prone to meltdowns, sensitivity to everyday stimuli, hitting and screaming. Aside from having some neurological setbacks, he has been communicating more efficiently, interacting with his siblings and sleeping better. I have been quite optimistic. This is against my nature. I don’t call myself a pessimist, just a realist. Realistically, life for us will be a bit more difficult. Today snuffed out my recent optimism.

Since having my fourth child, I have been having increased problems with my joints. I have issues walking up and down my stairs and more recently, using my hands for simple tasks. I visited the doctor and my blood was taken. I got a call this afternoon that confirmed my suspicions. I have Rheumatoid Arthritis. It is still sinking in. I keep thinking of a number of people I knew who suffered with RA. They had disfigured fingers and could not get around without some assistance. These people were twice my age. I know this is a progressive disease and I am still young, but I once again can’t imagine the future. How will it be in several years when I will be caring for my son and he will most likely be twice my size? I suppose I must continue to live for today and take steps to ensure a better future.

I tell myself frequently that life is about trade-offs. Some people seem to have it all but those people may suffer deep emotional stress. Others may live without life’s essentials but are full of joy. I sometimes feel envious of the seemingly perfect family pictures on social media. I really don’t know what their life is like at home. I imagine my family can also look seemingly perfect. In this instance, a picture may not say a thousand words, just hide them.

So I ask myself if I can live with my trade-off and if I can once again find joy in what I cannot control. Can I find the purpose in yet another disappointment? I am sure I will, it will take some time. It will take time to once again find optimism. This most likely will happen after adjusting to my new normal. Life will continue to hand out the sucker punches, it is a good thing past difficultly has me prepared.

*d*