Help Super Aiden Soar!

*d* and her family need our help. She’d be the last person to ask for anything if she felt like it was a burden to someone else. Well, I’ve been watching her carry the load for far too long. We all know her little boy and the struggles her family has faced. I can’t imagine the emotional drain *d* and her husband deal with every day. I want to help but there’s only so much I can do to help take away the mental pain, the heartbreak.

And now. Now her little guy is facing brain surgery. The cost will be devastating. So, thanks to the internet and GoFundMe, I’ve started a campaign to help and to let others that love and support her little family to help.

CLICK HERE TO HELP AIDEN SOAR!

If you’ve been touched by something you’ve read here and can spare the funds, every bit helps and is profoundly appreciated. Thank you for reading about us CrossRoadTrippers. Keep *d* and her family in your thoughts and prayers as they stumble through this rough crossroad.

~L~

This is the process they will use to find and possibly remove the tuber(s) responsible for his epilepsy and this is the neurosurgeon her son will see this spring.

Watch “Tuberous Sclerosis Surgery on ‘The Doctors'” on YouTube

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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*)

If a Photo Tells a Story

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Here we are, my youngest son and me. It was as uneventful as it looks. We were waiting in the van for Daddy to come out of the grocery store. My buddy said he didn’t want to go in so he sat with Mommy. He did get anxious while we waited so I decided to distract him with one of his favorite activities, taking his picture. “Cheeeeese!!!” he said while sporting his best cheesy grin. Of course I didn’t like how I look in any of the photos. My hair has been falling out at breakneck speed lately. I also noticed his hair was getting a little long. I am glad his medication hasn’t been doing to his hair what my medication has done to mine. Anyway, he was overdue for his haircut. Although, he’s been doing better at getting a haircut, I thought I’d let him go a little longer before we’d give him one. Autism and haircuts don’t mix well at our house.

That’s how life is for us, things like a haircut that seem simple usually have a story behind it, like this photograph. What you don’t see in this photograph is how swollen and painful my knees were that day and how bad my shoulder hurt. My Rheumatoid Arthritis was causing me a lot of grief. The only other time I had left the house that week was to pick up my oldest son from school. By this time, I was anxious to find any reason to leave the house.

Leaving the house wasn’t what it used to be and I was wondering if I should apply for a handicap placard. You see my cutie in this photo has had a rough life. Here he is at the end of a very rough summer. He has been weaker than usual because his seizures had been increasing. He didn’t want to go in because he had a few seizures that day and he was weak and a bit tired. I wondered if I should get a placard for the times he may want to go in and a long walk to the store would be too hard for him. What about me? Some days I can barely make it down my hall to the bathroom but I worry because neither of us “look” handicap. I had a crazy vision where someone deciding to do their own sort of “justice” was yelling at me for parking in a handicap spot as I unload my kids since I may not give the world some sort of visual confirmation of our need for a placard. There is no membership card for a chronic illness club. I guess it’s best I wait. We’d be okay a while longer, I guess.  I try not to take the kids out alone, it’s too hard on my body. So I thought about another topic; how sad this summer was and how we really didn’t do anything fun. I apparently wasn’t being very positive on this day.

My thoughts were interrupted by my son spitting. Yes, he has a bad habit. I’m not surprised. He has autism and epilepsy, and I have Tuberous Sclerosis to thank for all of that. He does things to make his Mom squirm, like most kids do, it’s just a bit harder to convince him to give up a bad habit. I try to be as patient as I can because I know he has a lot going on. I am not the master of patience yet, but I was getting a lot of practice in the parking lot this day.

He wasn’t interested in much that evening, including his iPad. When we are waiting for a long stretch I usually play a movie for the kids. We got this van specifically for the DVD players. Unfortunately they stopped working. Not great news for me. It’s helpful for times like these when I am at the receiving end of spit. There would be no way we’d be able to fix the DVD system so I tried not to think about it. It would just make me mad. I pulled out the next best thing to the DVD players, my phone. Technology can sometimes be grand and seeing himself on my phone is always grand for him. We took our picture together. We are two peas in a pod, he and I….

The course of my disease is eerily mirroring the one he has already taken. He took a medication that required eye exams every three months to check for vision loss. I am supposed to do the same but we don’t have vision insurance, so I am hoping for the best. He moved on to another medication after that one failed. It is used to treat cancer. He has to have labs done every three months to make sure the rest of his body is okay with the medication. I’m right behind him with Methotrexate and looking to see if I can start, and most importantly afford, to continue to take it after the first of the year. With all of the gloomy thoughts, I’m thankful his smile can put a smile on my face.

I flipped through the photos we took and wondered if my face looked a bit more round than usual. I had been on predisone for a while and I’d rather blame the medication for any noticeable fullness in my face instead of my late night snacking. I noticed how tiny my son looks in the picture. We were at the store so his Daddy could go in to buy him his breakfast shakes. It’s the only thing he will consume consistently. We buy them to supplement his diet. It isn’t cheap but it helps him maintain his weight.

That reminded me to check our bank account. “I hope there is enough in there to buy what he needs,” I thought. I sighed and took a long look at the summer sun. It will be sad to see it go. I wished we both felt good enough to enjoy it. We did miss a lot but we do have this picture together. We can certainly look the part but rarely does anyone really know what’s behind a photo.

There is usually a story behind our photos, as there are stories behind many things in our life that no one knows about. I’m smiling but I am always thinking about our health, money, the future, and sometimes regret. I try not to be negative but it’s hard not to be on occasion. The great thing is that he can always find a way to remind me how to be happy despite the flurry of thoughts that often bring my spirits down. It’s as simple for him as taking a photo with his very best smile. Although it won’t be that easy for me, I am certainly going to give it a try. Someday we may look back at this photograph among others, and I want him to know there was a genuine smile on my face, and he was one of the reasons why. I am blessed for every last moment, even uneventful ones like this time when he and I can take a moment, forget our troubles, and smile. “Cheeeeese!!!”

*d*

A Matter of Perspective

One of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” to “Why is she so anxious during social events?” Parents like my husband and I not only have to deal with issues such as these but we are also trying to understand everything associated with him medically. All these things intertwine like a complex web and pulling at any part of this web will no doubt effect something else.

For example, my one of my son’s diagnoses is epilepsy and when his seizures become poorly controlled, we have to decide the next step in management. Most of the time we choose to increase the dosage of his current medication before trying another medicine or approach. We also know his behavior is directly effected by how much medication he is taking as he has been known to have a low tolerance for anti-epileptics at high doses. This has made finding the right therapy for seizure control challenging. We want control but we also don’t want to see him overly aggressive and causing harm to himself or others.

A few years ago he started a new medication to treat his primary diagnosis, Tuberous Sclerosis Complex (TSC). The medication is normally used to treat cancer but it has been found to be a promising drug to treat TSC. A year after starting this medication, he was seizure free but he also stopped eating. Feeding issues were not new to him but giving up eating was and we became concerned. After asking adults on the same medication, speaking to his clinic and a nutritionist, we have a better understanding of how the medication may be effecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand how to unravel this complex issue. He could be refusing to eat because of his autism, medication, or behavioral issues. We also realize that we could be partly to blame for his finicky eating habits.

These two examples are not the only ones I could list but they are the issues that have caused the most conflict in our lives. It is particularly difficult for us to pull our son apart from his problematic issues and fully understand how to manage them, so trying to explain it to others is almost impossible.

I know my husband and I are not the only parents who are exhausted by the questions and unwanted advice over subjects we are trying to understand ourselves. We started our son in early intervention at four months of age. I have worked with therapist for years discussing his different habits and behavioral issues. We have spoke to his team of doctors, nurses, psychiatrist, nutritionist, and many more to try to give us the best chance of helping him live the fullest life possible. After seven years, there are many questions that we still cannot answer. There are many questions that don’t have answers. I want to share a few insights to what it feels like for special needs parents when conflicts arise over our child’s issues.

1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.
Although we have spent years with professionals to try to help our child work through various problems, there is no magic fix. There will still be times when he will have a meltdown, inflict harm on himself or others, and many other things we’d rather not see. This does not grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we have been working very hard to help our children. Don’t forget that they are often struggling in ways we don’t understand. If you haven’t been working just as hard at helping, then stop the unwarranted advice.

2: Dictating to us about what you think our child should or should not do causes unwanted stress.
We have been there. There is a party and all the kids are lined up, ready to play a game and someone says, “Everyone plays, even (insert our child’s name here)”. We have even been told we HAVE to sing The Happy Birthday song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries but we are also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. If we choose for him not to participate, we have a good reason and if that isn’t good enough, prepare to get what you have asked for, anxiety from our child or a stern “no” from us. Asking before assuming is always the best approach.

3: Pointing out our child’s flaws is very upsetting.
I don’t understand why others feel the need to point out our child’s issues, like we are blind to them. We are obviously aware of these things, it is OUR child. Instead, try acknowledging the good things our child is trying to do.

4: Fixing our child for us undermines our parenting.
Trying to “fix” things, especially without our consent is not welcome. If we don’t offer our child fruit at the dinner table, we don’t want anyone else to either. If our child hasn’t had a haircut for a while, there is probably a reason for it. Don’t try to save the day with these “fixes.” We are not neglecting our child when we choose not to do or offer things that others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture) so unless you are a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”

5:  Ignoring requests associated with our child will indeed causes friction in our relationships.
My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same, he’d scream and hit himself. This never stopped my grandfather, he’d keep asking. This caused us a lot of anxiety because even getting our son to the table was an accomplishment. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather, “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.
Sometimes an innocent question or action could cause anxiety for our child, so we ask our requests regarding our child be respected. Don’t be the reason for additional stress.

The bottom line is this; we need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless too but we are doing our best despite the fact that we don’t have all the answers. We want to be trusted to know what is best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.

*d*

What is Important to Me in the Coming Election

Dear Presidential Candidates,

I would like to be very candid with you about my life because I am a representation of many silent voters who are watching you carefully. I am an American who is living with chronic illness and I am also an American who has a special needs child. It may be rare to have both a debilitating disease and a child with one but here we are and I want share 6 points that are important to me. By the way, I have Rheumatoid Arthritis and my son has Tuberous Sclerosis Complex. Neither disease has a cure so our problems are life long, so we hope for long term solutions to the issues that are important to us.

So, how can my life be important for your champaign?

1: My son collects Social Security Disability Income.
Thus far, I do not. My disease has become more debilitating since my diagnosis and some day I may choose to apply for Social Security Income, but the difficult process is enough to make me steer clear of it for now. Everything I have learned and experienced about social security is difficult. I don’t have to go any farther than my phone to realize how broken our system has become. Don’t get me wrong, I appreciate this vital lifeline but we have developed a love/hate relationship with this program that was supposed to be designed to help children and families like mine.

2: We are directly effected by drug companies charging outrageous prices on medications.
My son was prescribed a medication for a type of catastrophic epilepsy called Infantile Spasms. We saw a huge increase in the price of this medication after FDA approval. He has since started a new specialty medication and because of the price, we are required by insurance to get preapproval every three months. This means I am a sick with worry every three months wondering if they will approve the only medication that has helped my son have an improved quality of life and seizure control. When has it been acceptable business practice to jeopardize lives to make money? The practice of specialty medications being distributed only by speciality pharmacies has also become an issue. The problems some families run into with these pharmacies is inexcusable. These problems range from allowing delay in medication shipment (even if it means the patient will run out of medication) and dropping a patient without proper notification (we have experienced both).

3: I refused medication to treat my own disease because I didn’t know if I could afford it in the future.
In January our high deductible insurance starts a new year and we still don’t know if we will be able to afford the out of pocket cost until our deductible is met. More private insurance companies are offering skyrocketing deductibles with H.S.A. accounts. They try to say we can thus control our own health care with an H.S.A. but this is false. In the end we are paying a premium, pushing money into an H.S.A. account, and we still don’t have nearly enough money to cover these huge deductibles.

4: My son and I have missed out on equipment, medication and therapy needed to help us live the best quality of life.
Everything comes with a price tag and if you have a disease, are disabled, or have been diagnosed with something like autism or sensory issues, expect a huge price tag. My son has needed protective headgear and a bed enclosure for his epilepsy and we needed help paying for these steeply priced products. He have lived without many items that would certainly make life easier for both of us because paying the price for these items would be nearly impossible, even with assistance.

5: Getting help paying for the variety of different needs is complicated.
Life is already hard with these difficulties and so many people have to navigate the paperwork and hoops to try to get what is needed and/or prescribed. How to get help should be clear and require minimal paperwork.

6: Families are choosing between health and cost.
No one asks to be diagnosed with something life altering. No one asks to live a difficult life made harder by the system that seems to work against people like me and families like mine. The government needs to decide if it actually wants to help or just talk about it. Cutting funding for critical needs programs is a low practice that needs to be stopped. In the end, you aren’t messing with dollars, you are messing with lives.

We are supposed to be living in the greatest county but many Americans are without insurance or reasonable insurance plans to pay for their medication and health care. It is a tragedy when drug companies can set their own prices and have no regard to the lives effected when the medication patients need is out of reach. If you don’t believe it, go to the local hospital and ask questions instead of taking pictures. I guarantee parents still have to leave the hospital empty handed and without what they need to take care of themselves or a sick child. The life of the sick should never carry a price tag. How sad. It’s time to consider what life is like for those who need the most help.

*d*

A Brother’s Lesson in Disability

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It's hard to believe they were once this little.

My disabled son is seven and he is the second oldest of my four children. My special needs son was diagnosed with Tuberous Sclerosis Complex at three months of age. A few of his secondary diagnoses include epilepsy, autism, and intermittent explosive disorder. He is considered multi-disabled. As he grew, his delays became more apparent to all of us, even to my when my oldest son. He and my youngest son are 17 months apart and it was very exciting for him to have a little brother of his own. It didn’t take long for him to notice that his little brother didn’t play with him as he anticipated, and that his little brother was also sick.

At four months, my youngest son developed a rare and catastrophic form of epilepsy called Infantile Spasms. These deceivingly innocent looking seizures occur in clusters and are very hard to control. He would have multiple episodes a day and the seizures would be only a few seconds apart and could last up to fifteen minutes. All of our best attempts at controlling the spasms eventually failed. This made it hard for him to reach developmental milestones. His brain was just too bombarded with epileptic activity to make any significant developmemtal progress. So as both my boys grew, the developmental gap also grew. My oldest would be playing ball, stacking blocks, or drawing and my youngest could only watch. His body was weak and he had limited mobility. He also had significant speech delays. It was obviously hard for all of us, but especially for his big brother who wanted to play with the “little buddy” he eagerly anticipated. How could I explain to a three year old why his little brother couldn’t play or talk? How could I help him grasp such a complicated subject in a simple way?

My oldest was very familiar with his room. We spent alot of our time playing there. I first asked him where all of his favorite toys were and he happily showed me. Next, I blindfolded him and asked him to bring me those same items. He did find and bring me what I asked but it took him a while and he needed my help. After that and a few laughs, I explained, “Your brother is just like you, he just sees things differently. It may be harder for him but he knows what’s around him, just like you knew your room even with the blindfold on. And just like you had to take your time, he has to take his time to do all the things he would like to do. You needed me to give you directions on where to go and we have to do the same for him. You eventually got to your favorite things and he will too. You are one of your brother’s favorite things and he will find you. Give him time.” I also reminded him that even though our experiment was hard, we still laughed and he needed to laugh with his brother, even when it gets hard. He smiled and I hoped something stuck but every day from then on I still remind him, and all four of my children, of one or all of these things when life gets hard,  give it time, offer help, give lots of love, and never forget to laugh.

*d*

Wrapped in Rust

In four hours I will hear the familiar rumble of his work car driving through the alleyway and to his parking spot. My husband drives a car given to us by my late grandfather. We inherited what my grandfather referred to as “the sweetheart of the highway.” She is over twenty five years old and past her prime. The cloth headliner is falling down and frayed, the paint is fading, it has crank windows, my husband gets only a.m. radio, and I am pretty certain the heater only reaches luke-warm. It has been vandalized twice (egged and spray pained orange) and the backside of many jokes, but it is paid off. I have asked him to consider purchasing another vehicle once we receive our tax return and pay off our van. I worry because the gas gage plays hopscotch between E and F and we never really know how much gas is in the tank.  The only thing new on the “sweetheart” is her tires. My husband reminds me of how much money we will have once the van is paid in full and how much debt we are still trying to reduce. So he may be driving her for the next twenty five years.

I imagine my husband has been taught to see the value in something when no one else does or he knows we have no choice but to keep it. I know how hard we struggle. Each month it gets harder to pay bills and have enough remaining to purchase groceries. We both have decided to make the necessary sacrifices that allow me to stay home with the children. My son’s medical condition is multifaceted and complex. When we discussed if I should re-enter the workforce, choosing care for him would not be as easy. A caregiver would have to be trained in rescue techniques and medication. After weighing the cost of daycare for multiple children and working, we wouldn’t be making enough to sacrifice our peace of mind.

I did work part-time every weekend for five years. I really enjoyed my job but my son’s health was failing and we both knew it was time for me to care for him permanently. He has since stabilized but spending the past two years at home has been lonely. I know I contribute to our household by caring for the family but brining home a paycheck gave me a sense of accomplishment. I also had a place to socialize and  the opportunity to feel like more than just “Mom.” I had a name and I had a life. Being a parent to a special needs child is lonely. Rarely does anyone care to understand what life is really like for us. We seldomly go out and rarely get asked to do so. Babysitters, like caregivers, are also hard to find.  In addition, we are always tired. I haven’t slept for more than four straight hours in over seven years. The deprivation plays with your head and the loneliness gets to your heart.

I spend a lot of time at home. I miss having an escape from dirty diapers, screaming, autistic meltdowns, and noise. I miss conversations with people my own age. I could make plans after work or do some shopping on the way home. Sometimes when I talk about my situation, others will say, “Don’t forget to make time for yourself.” That is a nice thought but a more productive approach would be to ask, “How can I help?” But with the isolation of my existance comes  infrequent conversations.

So I wait. I wait for my husband in his little white “sweetheart.” I anticipate her rumbling up the alley and a breath of relief escapes from my mouth. I wait for his conversations. I wait for his guidance. I wait for his help. At that moment my lonliness fades away.

It’s funny to think my hero, the Prince Charming of my girlhood dreams, comes calling in a rusty old piece of machinery. He cares not of the eloquence of his arrival but about what he does once he is here. He fills in the empty parts of my heart and the loneliness of my day. He understands when I greet him at the door with my tousled hair and can still imagine what I looked like when I readied myself that morning. He doesn’t worry when I cry about the life I feel like I have left behind. He listens and asks, “What can I do to help?”

My son, like my husband is wrapped in a rough package. My husband would certainly not get a second glance in his run-down stallion. My son sometimes gets a second look, but often for his differences. He is wrapped in a disease that often covers the treasure he is inside. It is nice to know that those with true character often hide it inside.

*d*

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