My baby is going to be two soon and I get tired of hearing about the “terrible twos” or the look of remorse on people’s faces when they find out I have a two year old. Two can be a trying age for parents, but imagine what it’s like for a two year old. These little ones are growing and doing so much for the short two years they have been alive. I feel blessed and honored to have her so I wrote a post of what a two year old, like my daughter, may say to their parents if they could.
I am not a nuisance.
I want your attention because I need you.
I am learning.
I have to test what’s around me to find out how it works.
Let me drop things and make messes.
I won’t know how messes are made until I have made some. (Oh, and I don’t understand gravity.)
I need to explore.
I won’t learn or understand if you contantly yell at me for exploring my environment.
I will throw tantrums.
The world can be overwhelming for someone who’s only been in the world two years. I also don’t understand all of my emotions. These things aren’t easily understood by adults either.
Don’t expect perfection out of me. I can’t be held to an unrealistic standards unobtainable for even you.
I can be demanding.
I get mad when I don’t get my way and I think everything is “mine!”. How do I know who is in charge and how to share unless I am taught those things?
I need a nap!!!!
I’m learning a new language and how to use my body. I’m also growing very fast. All of this makes me tired! Please, give me a break and let me rest!
The world is a very big place for me and I need a break from it.
People and places can overwhelm someone as small as me. I often need to spend time in a familiar and comfortable place.
Don’t forget that everything around me is four times my size.
Sometimes it’s nice for me to be in a safe environment just the right size for me. Why not buy me my own chair or a toy at my height? It helps me learn how things work at my own level and it makes me feel special.
I spend lots of time climbing.
I have to climb to use those big things around me but keep a close eye on me because I think it’s my job to conquer everything in the house!
Stop acting shocked when I’m upset when I don’t get the rest I need.
I’m too little to keep up with your pace. My emotional state often reflects my physical state. I feel better when I can rest when I’m tired, don’t you?
Look at how much I am doing AND I’M ONLY 2!!!
I am an amazing work of art, sometimes you just have to stand back and look at how beautiful I am!
In my two years of life, making you happy is the greatest thing! Let me know you are happy with me.
I like attention.
I’ll behave well or poorly to get it, so you may want to recognize the good things I do to get it.
You are my whole world!
Really, you are. There is a reason I want you to give me all of your attention. You are my first true love!
I was thinking about what Rheumatoid Arthritis (RA) has taken from me today. It has taken many things; my peace of mind, health, mobility, strength, and much more. It has been hard to accept that just a couple years ago I didn’t have to worry so much about my own health, the peace of mind about being able to take care of my own children was secure, and I knew I had the physical and emotional strength to take on whatever life threw at me. Now most of my day is centered around pain. I ask, if I stretch, exercise, or take the right medication or supplements, can I relieve this pain? But the day usually begins and ends the same, in pain.
I am certain I can handle what the disease takes from me, what I don’t like is what it takes from my kids. Above, I posted a picture of me holding my youngest daughter. She is our surprise baby; you know, that baby who comes along and yells “surprise” a week before a scheduled hysterectomy. My husband and I determined we were finished having children and I needed to have the surgery to take care of some health issues that have plagued me for many years. These problems were so disruptive, we are lucky to have even one child, we have four. When our youngest snuck in under the radar we were very excited. We were shocked and thrilled when we finally conceived our first and every child thereafter was equally, maybe even more exciting.
I think I do alright as a mom. I love and have loved every stage of their lives thus far, but I especially love the toddler years. I personally think too many people focus on the possible tantrums or stubborn nature of a toddler and miss all the incredible things they are learning and accomplishing in the first short years of their lives. I was always the proud mom to carry her babies around on my hip. The first three were glued to my hip as long as they’d allow me to pick them up and put them there. Unfortunately for my fourth, she hasn’t had the same. I am unable to pick her up, let alone carry her like I could with my other children and that just makes me mad. She is frequently raising her arms to me and saying, “up” and I have to say, “Sorry baby, mommy can’t pick you up right now”. Yes, I know I can find other ways to pick her up and I know it isn’t a necessity but I want to do it! I hate that my RA has taken this simple joy from me. I have accepted and smiled through many things that have spewed into my life but I am neither going to smile or accept this one.
As you can see, I try to pick her up as much as I can, pain or no pain and I often try to take a picture. I want to remember that I was blessed to have had babies on my hip. I am privileged to raise my children and I will keep doing my best despite what this awful disease does to me. I will pick them up (try to put them on my hip), hug them, kiss them, and smile at them, even if the entire day is experienced in pain. When I think hard about it, my life isn’t about me, it’s about who I have been gifted to love. The love of a child is far more powerful than any pain some awful disease tries to throw at me.
Spend more time praising me when I do something right rather than solely scolding me when I do something wrong. Praising me when I do well teaches me that you are paying attention. I learn that positive choices mean positive results and I have the ability to make others happy by my good choices.
Let me spend time independently.
Don’t hover over me. Let me wander around a safe environment. I need to learn that I can do things on my own and feel the accomplishment of doing things independently.
Allow me to fail.
I need to know life isn’t always fair. I know you love me but let me fail so I can learn to try again and not give up. I will grow faster than you realize and I need to be able to graciously accept defeat when necessary and know failing isn’t the worst thing that can happen to me.
Remind me that you are looking out for me.
Remind me to zip up my coat, clean my room, and do my chores. Keep after me because I expect you to. Be my parent first and then my friend. I will have a lot of friends in my childhood years but you will be my longest friend, just give me time to grow and realize it.
Make sure I know you love me, even when I fail, refuse to listen, or disappoint you. I’m not perfect. I will never be perfect but your love for me through anything feels pretty perfect.
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.
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.
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.
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!!!”
Lately I have been wondering if I have been truly in love with something or just the idea of that something. For example, I decided at our last monthly grocery run that I wanted to try to be a coffee drinker. It isn’t that I haven’t had coffee before, I was one of those people who got a coffee maker for a wedding gift ten years ago and used it maybe twice. I love going to our local specialty coffee shop and indulging once a year but making my own wasn’t anything I was ever interested in. Now I thought I’d give it a try for a number of reasons; I would rather get a small boost of caffeine from a small cup of coffee versus pop first thing in the morning, my RA has had me running on fumes, and I love the smell of coffee. I have been spawned by long and large group of coffee drinkers. I would smell the lingering aroma of it from home to the home of a relative, and every Sunday morning at church. The Baptist couldn’t wait for a coffee fueled sermon followed up by coffee fueled fellowship. The thought had occurred to me that I had an emotional attachment to the smell, and not the taste. It’s probably true. We were between housing when we lived with my eighty-something year- old grandparents who brewed coffee in the morning, reheated it in the afternoon and anytime they got a chill, which was quite often for my late grandfather. I miss him dearly and my decision came upon the heels of a year since his passing.
So we’re at the grocery and I stopped and stood in the coffee aisle taking in my limitless possibilities. I admit that I was a bit shocked by the number of choices I had and I am not a decisive individual. My son cheered me on as any bad influence of an eight year-old would. Apparently drinking coffee is a huge thing for third graders at his school…. So after telling him to stop taking out every interestingly packaged coffee and coffee mug for his new habit, I chose a very girly vanilla cupcake flavor coffee. Heaven forbid my coffee would actually taste like coffee. One package of coffee filters and a over indulgent container of chocolate caramel creamer later, we were headed home.
I returned home more than eager to brew my first cup, but where was that coffee maker? I had a frightening thought that I may have pitched it in our last move. Why not? I never used it anyway. I kept frantically searching as I secretly began to repremand myself for throwing it out. I don’t like throwing anything out for this very reason, I’d have to buy another one and I know that wasn’t going to happen anytime soon. Finally, I found it! But then I didn’t know how to use it. Luckily the people at the girly coffee factory want to make sure all of us novice coffee drinkers could make a cup so we could thus get hooked. Great idea! I got it ready and began to unload groceries as it brewed. My husband thought I’d surely made it wrong when it only took a few minutes to brew my quarter pot of coffee. Then I had to find a cup to put this newly acquired liquid gold in. I certainly had some coffee cups as I am avid cocoa drinker in the winter months. One coffee cup is all I found. Darn. Then by chance I found an awesome mug fit for a coffee pro. I washed it, poured my first cup, and it was weak. I made it too weak. I was going to need more zing than that keep me going during the day. The second cup was amazing and I felt special sipping out of my fancy cup. For the next few mornings my coffee was already auto brewed by the time I came downstairs. I had a bit more zing in the a.m. and I began to see why people insisted on starting their mornings with this stuff. Then the disappointing happened, I started having terrible heartburn. I cringed when my mom suggested it was the coffee. After all that trouble, it was causing me heartburn that could be mistaken for a heart attack.
This afternoon rolled around and in the true spirit of the Midwest, it was below normal temperatures and a hot cup of coffee sounded great. I brewed it and it is still sitting there an hour later. I haven’t touched it. Do I dare chance the feeling of looming death for my newly acquired taste? Today I may be satisfied with my emotional attachment to the smell.
I am more disappointed that I once again can’t be like all the other “cool” people and start my day off with a jolt of girly coffee goodness. I can live with reducing my consumption but what about that smell? It reminds me of home, loved ones, and a church family that felt more like my real family. Maybe I need to think a little harder about sporadically falling in love with an idea because it seems like those ideas for me don’t pan out in real life.
My daughters have been playing together more as my “baby” is now a year and a half of busyness. She follows her big sister with her ride on toy, they play with the tea set together, and they frequently say “Bye!” as they leave for their pretend jobs . It makes me wonder what it would have been like if I had a sister. I have been in love with the idea of a having a sister forever. I have seen cute little posts on social media comparing a woman without a sister to one without an arm or some other nonsense. Like I had a choice about how my family dynamic played out. I hoped I’d someday have that faux sister that I could go shopping with, call on the phone, and we’d celebrate all of life’s joys together. But from what I see, it isn’t as glamorous as I had imagined. Sisters fight. I don’t like to fight. But I still wonder.
And then I wonder about all the things I may have missed out on; a college degree, a full time job, and all the dreams I watch others live out. Those notions are so much harder to live out than buying a four dollar package of coffee off the shelf. So I learn to accept life as I have it. I have notions about what I think life is all about and no one knows what my life is really like. So I keep dreaming about those little things. Are they what I really want or do I just like the idea of it all?
I am awful good at looking idealistic. I often seem like a pillar of strength or maybe a beacon of hope, but I complain about the circumstances out of my control just as well as the rest. Why does my coffee have to give me heartburn? Why am I not worthy of meaningful friendships with other women? Why am I sick? Why are we drowning in medical debt? Why are we not living out this dream life? And on and on….. The truth is, things aren’t easy. We spend time doing a lot of things we’d rather not. Last night we spent three hours preparing and sorting paperwork to fight social security. Yes, they want to take back payments from two years ago just in time for the holidays. My desk is full of paperwork only special needs parents or the chronically ill can appreciate. “Here is your half ton of paper work Mrs. M.! Good luck with all of that because life understands how easy you already have it.” Yes, nothing is easy or as it seems. I can be joyful in the face of adversity but I can be equally as disappointed in those things beyond my control. I just keep trying. I keep smiling and I try putting my faith in things that have a special place in my heart whether it be a friend as close to my heart as a sister or my husband who spends three hours on the floor digging through paperwork. As for the coffee, the trouble was almost worth that smell of home but then again I guess I can find a candle for that.