autism, Uncategorized

Fears for the Future

Noah was officially diagnosed with autism when he was three. I had no idea how much my life would change with this diagnosis. It was devastating in the beginning. It was like I went through a grieving process. I was terrified about his future. We had no idea what to expect. Autism has no two kids alike. They call it a spectrum for a reason because the severity and behaviors vary from kid to kid. The things that you assumed would come naturally were now a waiting game. Sometimes I wondered if those milestones would ever happen. Having a typical kid before Noah meant that I already had my own preconceived ideas of the things he would do as he grew. Maybe it’s my own fault but I assumed he would be a lot like his brother. I assumed he would be athletic and want to play sports but he had no interest. He loved dinosaurs, animals and bugs. I assumed that he would be a little chatter box and talk non stop but instead I was thrilled to get him to say any words at all. The worries and fears that I had for Noah and his future were new territory for me.

How will he be treated by his peers? Will he be bullied? Will he ever have a best friend? Will other kids play with him on the playground or will he even acknowledge them if they approach him? Will he be able to continue to be in a traditional classroom? Will he go to prom? Will he graduate? Will he go on to college? Will he move out on his own? Will he get married? Will he have kids? The list of questions for his future could go on and on. Some days I let these questions and these worries take over my mind but recently I read a quote that helped me change the way I was thinking.

“Don’t let your fears for the future stop your joys in the present.”

It occurred to me that I’ve been letting so many of my fears get in the way of the day to day successes that we have. I’m working on just taking things day by day instead of worrying constantly about what the future holds for him.

Noah has had so many breakthroughs this year. He has learned to ask for help instead of getting frustrated and crying. He has learned to wait (2.5 mins to be exact) before he asks again for something. He has adjusted to being in a traditional classroom. He is making progress academically and has been able to learn in an environment with all typical kids around him. He has learned to look to his peers to do what they are doing if he didn’t understand the directions given by the teacher.

One of my biggest fears has always been him being bullied. We are so lucky that it is not an issue in his class. There are 3 girls in particular that go out of their way to help him. I get emotional when I think about the fact that they have taken on the job of helping him without being asked to do so. Kids can be wonderful, kind and loving little humans.

When the autism community talks about autism awareness and acceptance we want to teach everyone but I feel like adults need the most teaching. Kids model what they learn at home. I’m just happy that we have amazing kids and parents in Noah’s class that practice patience and kindness toward others that are different. They give me hope.

~M

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autism, parenting, Uncategorized

A Lonely Road

April is Autism Awareness month and I’ve decided to share in a few posts about our journey through autism.

It can be hard to explain what it is like to parent a child with autism. It can be quite a lonely road to travel. Maybe it is my own fault for not being more proactive to find more friends with special needs children. I’ve joined a few online groups made up of parents that have children with autism but rarely get anything from the posts or conversations. Some of these parents have very different views than I do. Some have very out there ideas about what caused their child to be autistic. Some parents are very opinionated about medications and therapy. I am non-confrontational and choose not to engage in discussions where I know I will not change their minds nor will they change mine. When it comes to what I believe is the “right thing” to do for my son I don’t need anyone who doesn’t know my son telling me what I should do.

I see parents every day when I drop and pick Noah up from therapy but I have yet to connect with any of them. The brief time that I’m there doesn’t really allow for making friends anyway. The waiting room is a little chaotic. The children there are all very different, some more severe than others. I have so much empathy now for special needs parents who are dealing with their day to day challenges. Some have it much harder than I do and I try to keep that in mind on my tough days. There are children older than Noah who still aren’t potty trained. There are kids that hit themselves or others. Some that are completely nonverbal. I could go on and on. So many parents like me avoid going to crowded and noisy places for fear that their child could have a meltdown. Noah has had those public meltdowns and it is awful. I could see the judgmental stares and see people whispering. Some parents have children that will run away or wander off. Noah wouldn’t run but could easily wander away from me. One of my fears is still that Noah would get lost and not know how to tell an adult my information to find me. We’ve been practicing him knowing my name and phone number for a year but he’s still not consistent in answering that. Noah lacks some of the basic fears that other children have. Noah is generally not afraid of strangers and could easily walk off with someone that just took his hand told him to go with them. If someone hurt Noah he wouldn’t be able to tell me who it was or what they did. It is so incredibly scary to be out where I can’t keep him in a little bubble.

Most of our friends and even our family can’t understand what I go through on a daily basis. They only know what it’s like to parent a typical child. They don’t see the lows and the days that I feel like a failure. They don’t share the same fears that I do for my son. I don’t feel sorry for myself or want other people to feel sorry for me but I do wish it was easier for people to understand the daily struggles.

I often see where autistic parents say the words” I wouldn’t change my child at all”. I know at some point in a post on IG or FB I probably said something similar but I can tell you that I was lying. The truth is that I would change some things. I’m not saying I would change his personality. He is so incredibly sweet and I cherish how affectionate he is. I love that he loves to be outdoors and how much he loves bugs and animals. But despite my love for him I would change a few things. I would want to have just a simple conversation with him. I would want him to be able to understand the questions I ask him and hear his answers. I wish he could tell me what is wrong when he’s upset. I wish he could be able to interact with other children and have friends to play with. I wish I could ask him what he’s thinking when he’s quite and staring off into the sky. I know that he is constantly improving his expressive and receptive language and I can only pray that day may eventually come.

 

~M

 

 

cancer, Chemotherapy, overwhelmed, parenting, Uncategorized

Our New World

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Just weeks after learning Nathan had cancer we were thrown into this new world of treatment. We were admitted into the hospital for his chemo port placement and his first round of chemotherapy. We had so many doctors and nurses coming in to educate us on what we would be going through the next 6 months. They literally gave us a notebook full of information. In it were the names of all the chemo drugs that would be part of his treatment. All the side effects that he may or may not experience. The prescriptions that he would be taking. Lists of the labs that would be drawn each week and the normal range for him now that he will be immuno suppressed.  Despite my 15 years in the medical field all of this information was brand new for me. Especially new because this wasn’t just any other patient this was my son. Being on the other side was very eye opening.

The night Nathan started chemo was scary. I had no idea what to truly expect. Would he be sick? Would he have a terrible reaction? Would it hurt? They started at 6:00 pm and it wasn’t over until 6:00 am. I didn’t sleep much that night. I stayed in the chair next to his bed holding his hand. I had several moments of tears but made sure that he didn’t see me cry. The night was long but he only felt sick a few times and the medications they gave him for that helped him sleep through most of the night.

I think every one has a moment where they wish they could trade places with someone. This was one of those moments for me and I would have given anything to take his place but all I could do was be there next to him. Be there when he needed me. Just be there to hold his hand. As a parent it was a very helpless feeling. I can’t imagine how parents of younger children go through this experience. Nathan could understand what was happening and why it was happening. Thinking about what I would do if this was my toddler laying there helped me to be thankful for that simple thing. I decided that I needed to start finding things to be grateful for throughout this process. So here we were in this new world but I would have a new mantra. “Start each day with a grateful heart.”

~ M

 

cancer, high school football, parenting, Uncategorized

Four Words

Four Words. Your son has cancer. Four words I never thought I would hear.  Four words that just didn’t seem real. Four words that changed our lives forever.

Nathan just turned 18. He’s healthy. He’s an athlete. He can’t have cancer.

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The bright white at the center of his leg is the tumor.

 

Summer 2017 Nathan came home from football complaining about his leg hurting. He pointed out a small knot just below his knee. No big deal, right? I mean he was the kicker for his football team. He was kicking daily and not just a little kicking. He was practicing kick offs, punting and field goals.  Naturally, I assumed any pain he was having had to be caused by overuse. The season gets rolling and he complains off and on about the pain. We would alternate using ice packs, heating pads and give him an anti-inflammatory to help but the knot never went away. Nathan was kicking the ball better than ever. He was starting to get calls and letters from colleges about coming to kick for their football programs. We were excited about the opportunities that lay ahead. The football season came to a disappointing end in the state semi-final round. But even though our goal of a State Championship title didn’t happen Nathan still walked away from the field with so many honors. He was named to the All-State team for Kicking and Punting. He finished in the top ten in the state for most points scored by a kicker. And he was named 2017 Kicker of the Year for Nashville Area All Region. I was one proud mama!

The season’s end was a bitter-sweet time for me because this meant it was time for the littles and I to make the big move to Michigan. We moved Nathan into my parents house and with a heavy heart I left my first baby behind to finish his senior year with all of his friends and classmates. Of course it wasn’t an easy decision to move without him but he was a senior in high school and I couldn’t expect him to leave. Even though I was 550 miles away didn’t stop me being his mama. We talked every day. When we talked he started complaining more and more about his leg. It was swollen and at times he could barely walk on it. He called me in the middle of the night the second week I was in Michigan in tears because it was hurting him so bad. I told him that night on the phone that I would make him an appointment with an orthopedic doctor. I have always been a walk it off  kind of mom but it was past due for him to have his leg looked at.

Just a few days after Thanksgiving my dad took Nathan to the ortho appointment. I waited to get a call to hear that everything is alright but that didn’t happen. My dad called and said the doctor isn’t worried about his knee. He’s concerned about the mass or cyst on his shin. He wants us to go to get a MRI right now. My dad is a preacher and has no real medical knowledge so he didn’t know he should be worried. But because of mine and Les’s lengthy medical background we knew what it means when a doctor says they are concerned. It felt like someone kicked me in the stomach. I was terrified and I already knew this was bad. I called the doctor’s office and requested that the doctor call me personally. Within minuets I received a call. *Yet another bad sign if a doctor is returning your call that quickly.* He told me that there was a tumor on the upper half of his tibia and it was most likely cancer. It could possibly be osteosarcoma due to the location of the tumor. He couldn’t believe that Nathan was able to kick the ball the way he did with a tumor that size in his leg. He said that he was referring us on to an orthopedic oncology surgeon.

When I hung up I purchased one way tickets for the kids and I to go back to Nashville. In my heart I knew we wouldn’t be coming back to Michigan any time soon. I told my parents not to tell Nathan anything yet that I wanted to be the one to talk to him. Of course he knew something wasn’t right when he found out the kids and I were flying back to Nashville after only being gone for 2 weeks but he didn’t know how much his life was about to change. When I got home Nathan and I went to a nearby park and sat at a table in the shade to talk. It was there I told him that what they saw on his x-ray and his MRI was a tumor but we don’t know what type of cancer that it is yet. At first I could see the confusion on his face and then the tears began to fall. He said, “If its cancer does that mean I’m going to die?” I told him absolutely not! That we didn’t know everything yet and that we would fight this step by step together.

The following Monday there we all sat in the doctor’s office to finally get some answers. Nathan’s father, Joey, and my parents came along with Nathan and I for support. The doctor was amazing. She said from the look of the tumor if definitely looked like it was osteosarcoma. Then she went on to tell us that this meant a 2 year long treatment plan that included chemo, radiation, and a major surgery where he would remove half of his tibia and replace it with a titanium bone. It was overwhelming but she explained all of the steps that would follow. Scans, tests and then the biopsy of the tumor to be certain of the type of cancer that was there. Things went really quickly from there. Two days of tests and scans. Then it was time for the biopsy. They took Nathan to the OR and sedated him for this.

The best news we had heard came after that. The doctor came out to talk to us when they finished the biopsy and said that the tumor was very large, 7 cm in length to be exact. It originated in the bone and had now grown outside the bone as well but it wasn’t osteosarcoma. She was almost certain that it was a lymphoma. My question was so this is better right? And her answer was… cancer is cancer but the treatment plan for lymphoma is shorter and means that he would lose the bone in his leg. The downside also means that with lymphoma there is a greater likelihood of the cancer coming back one day. So we waited patiently and finally received the official diagnosis. Nathan had stage 2 non-hodgkins lymphoma.

I will say that I was pretty hard on myself about being the parent that didn’t take their son to the doctor when something was obviously not right. I was so sorry for pushing him to keep playing. Telling him he was fine and that is was probably shin splints. I kept reminding him that if even the smallest thing was wrong and they told him he couldn’t play anymore that his season was over. Telling him how much it would hurt the team to lose him. Ugh! I still have a hard time remembering back to all the times I brushed his pain off. Nathan wasn’t hard on me about it though. He was very sweet and only mentioned once in the waiting room of a scan appointment that this was a little bigger than shin splints. Ha!

~M

cancer, graduation, med school, moving, parenting, Uncategorized

2017 RECAP

Well since I skipped a whole 2 years of blogging I’ve decided to do a recap of 2017 and then I’ll take on 2018 next. I can honestly say that 2017 had more ups and downs than any other year in my life. So many amazing things happened but several lows came my way too. The year ended with one devastating blow pushing it to the top of the list of worst year I’ve ever had. The year got off to a great start. In March Quinn turned two. Her personality grew just as fast as her hair did. Those crazy curls and her sweet smile  She is our little tornado princess. It’s impossible stay mad at her because of how cute she is!

In May it finally happened. Leslie finally graduated from medical school. It was such an amazing weekend full of celebrating all of her hard work. I can honestly say those 4 years were the longest years of my life!

She matched to an internal medicine residency in Warren, Michigan that would start in July. While her 4 years of medical school were over it was time for the next step. Her 3 year residency program would begin July 1st and even though.

We made the most of our summer and enjoyed time with friends and family. I would say that our favorite part of the summer was our week at the beach with my family. We had some great family pictures made. The kids LOVE the water and had so much fun playing in the sand. It was a great getaway for our family.

It wasn’t an ideal situation but the kids and I were not able to make the move with her that summer. We agreed that I would make the move to Michigan at the end of November or early December. Nathan was entering into his senior year of high school with his senior football season starting in in August. This was going to be such a big year for him and we knew that I couldn’t miss it.

We put Noah into a ABA (Autism Behavioral Analysis) Preschool full-time. He made so much progress in there summer program that we decided to pull him out of the public school blended class to be at the therapy center to help better prepare him for kindergarten. In this environment his teachers are trained to work with autistic children and could help shape and change any undesired behaviors this crucial year before kindergarten.

We had Quinn’s speech evaluated after she turned 2. They determined that she had a significant speech delay and would need speech therapy at least 2 days a week. She started speech therapy with the sweetest speech therapist. They encouraged us to have her around kids as much as possible because with Noah being very limited verbally she would benefit being in a environment with typical children to help improve her language. So she continued at her Mother’s Day Out Program twice a week.  She loved being the center of attention there and  she loved her teacher, Ms. Fiona. I think Ms Fiona just might be her favorite person ever. Being with the other children helped tremendously with her speech delay and her expressive language shot through the roof!

Nathan’s senior football season was amazing. I loved volunteering with the other Senior Moms to do things for the boys. I loved every min of watching him play. He was kicking better than ever. He kicked over 70 points for the year. They went undefeated in the regular season making them Division Champs. He was voted onto the All State Team for kicking and punting. He was Kicker of the Year for Greater Nashville Area. I could not have been prouder of the way he ended his high school football career.

I left my job the middle of November to get ready for the move to Michigan in December. I had started working at St Thomas when I was 20 years old. It was my first “real job”. I worked there while I finished school then took a night shift position in the respiratory department after I completed my degree. It was not just a place I worked. These coworkers were my family and my dearest friends. This wasn’t just a job for me because I loved what I did. I loved taking care of my patients in the ICU. I loved the challenge of taking care of the sickest patients in the hospital. To say I was sad to leave was an understatement but it was incredibly sweet of all my coworkers to make sure I knew how much I would be missed.

At the end of November with football season over we finally made the move to Michigan. The kids were excited to be in a new space and loved playing in our new backyard. There was so much to explore. They barely stayed inside for more than a few mins. Noah was able to start into a new preschool after being there for a week. I was super anxious about it but because the class only had 6 students and then there was a teacher and her assistant in the room. I still needed to set up ABA therapy but was happy to go ahead and get him started on a schedule. I had plenty to do to keep me busy around the house. When we got there Les hadn’t done much other than move her clothes into the closet and set up the TV. The house felt like a sad blank space and I needed the house to feel like home as soon as possible. I spent hours unpacking, organizing and decorating the house. Eventually I started to see a glimmer of this being home!

On November 31st I received a call that knocked the breath out of me. Nathan had been having persistent knee pain despite football being over. I scheduled an appointment with a orthopedic doctor. My dad called and said that the doctor isn’t worried about his knee his more concerned about the mass or cyst below his knee and they were sending him for a MRI. My dad is a preacher with no medical background so I called the doctors office myself. Once I was on the phone with the doctor he told me that the x-ray showed a tumor just below his knee and believed it was cancer. When I hung up I started frantically looking for flights and packing bags for myself and the kids. Booked 3 one way tickets back to Nashville for the next morning. Les dropped us off at the airport and kissed us goodbye not knowing when we’d be back in Michigan. Then there we were back in Nashville in less than 2 weeks. Nathan’s father and I sat in the waiting room of Vanderbilt Children’s Hospital with Nathan waiting for him to have multiple scans and tests. I was terrified to put it lightly. Then begins the long story of Nathan’s diagnosis and treatment and I’ll share all about that in posts to come. (The cancer in Nathan’s leg is illuminated in bright white in the picture below.)

But these last photos are of the kids together December 2017. We had no idea how Nathan would feel or how much weight he would lose once treatment began so I had a friend do a photo shoot of them together for me. I absolutely love how they turned out.

Then to round out 2017 I have a few photos from Christmas with our family.

And there it is 2017’s Recap!

~M

parenting, Uncategorized

Keeping my Sanity

Being a mom is an amazing job. Its a very rewarding job. It’s a selfless job with very little recognition. There are no yearly evaluations or raises. I’m lucky enough that I can stay at home with our kids during the week and only work weekend nights.  This is something I have chosen and I know it’s not for every mom. I enjoy it but there are days that it can be a very lonely gig. Sure I have my kiddos but I still long for adult conversation and interaction. I’ve learned over the years that there are a few things that I need to do to keep me sane. 

So here is my short list of things I do.

1. Scheduling play dates are a must. It doesn’t always have to be something big like a trip to the zoo. Even a play date at a friends house is refreshing to be out socializing with another adult. 

2. Rotating toys and books! I keep toys and books out all the time but I’ve learned that toys and books that have been put away for a few weeks are treated like brand New when I bring them out.

3. Taking time for myself when the kids are napping. I used to take this time to get things done around the house but now I take this time to read, do yoga, watch something on the DVR, calling and chatting with a friend without distractions or just enjoy a cup of warm coffee without being interrupted.

4. Letting the kids watch a movie or play on the iPad for a while. I used to feel guilty for putting the kids in front of the TV or iPad but now I realize that if this is something that can give me some time to get things done around the house it’s ok!

5. Getting a babysitter at least once a month so we can go on a date or just go to dinner without the kids.

These are just a few of the things that help keep me enjoying my life of being a stay at home mom. 

~M

Uncategorized

A Diagnosis 

Noah is just a few weeks away from turning 3. We recently had him evaluated for the Metro Nashville Public School preschool program. Talk about overwhelming…in the evaluation there was a Special Education teacher, a speech therapist, an occupational therapist, a developmental therapist and a child psychologist. They all had questions for me about Noah, his behaviors and development thus far. There was also lots of paper work and questionnaires I had to fill out about him. At first they just observed Noah playing alone. In typical Noah fashion he hummed a tune while lining up the cars, the people, the trucks, and then the pizza. Eventually they took him over to a table and asked him to do different tasks. The process took 2 hours but it felt like we were there all day. At the follow up appointment a couple weeks later we went over their findings and Noah was officially diagnosed with Autism. 

This is something that I knew was a possibility but hearing the official diagnosis is still overwhelming. When I first saw the diagnosis on paper my eyes welled up with tears and it was all I could do not to start sobbing right there in front of these ladies. I’m terrified of he unknown. What does the future look like for him. Will he be able to be in a “normal” class later. Will he catch up and ever be on track with other kiddos his own age. I try so hard not to compare him to others but it always creeps in the back of my mind.

The plan is for him to start school when he turns 3. He will go 5 days a week from 8-12. They stressed to me how good the structure of school will be for him. He will continue to receive therapy twice a week while at school in a small group. He will be placed into what they call a blended class. A blended class is made up of some children like Noah with special needs and a diagnosis like autism and the other half of the children will have no special needs or delays. This type of class will help Noah catch up developmentally and socially. 

I know that we are doing all we can to help him. They keep telling us how early intervention is key and I don’t know how much earlier we could have caught it. Of course this doesn’t change how much we love him. He’s still our precious little boy that we adore. Just trying to lay aside all of our worries and fears. I know that we are very lucky that he is happy and healthy. It could be much worse so I am thankful for all we do have. Just taking a moment to let it all sink in. 

~M