Life with Fenix

Hello, my name is Tahnee Marie, I am a wife to my red bearded man and mama to Fenix (3) and Emery (1). I love Jesus, Harry Potter, all the foods, and snuggling with my babies. Bear with me on the not so cute layout. I am on borrowed time while our daughter naps and I am hoping to have it looking cute soon! I have always enjoyed blogging and have done so on and off for 10 years. I have never been consistent, mainly due to self-doubt. I felt like, everyone has a blog and is doing it way better than I ever could hope to, so why bother? Everyone has something to promote, is super crafty, takes perfect pictures of their curated life and they usually look like they walked out of a J Crew ad and their homes look straight out of Pottery Barn. I can’t compete. So I would stop blogging.

I think one of the reasons that I love blogging so much is that typing my feelings through my keyboard gives me a little security and allows me to sit and really think about what I want to say, and of course going back and editing tidbits is always nice too. When it comes to our son, there has been so much that I have wanted to say but I also felt restricted by small paragraphs on Instagram and I wanted a little space of my own to put my feelings in.

I tried taking Fenix to the doctor about 4 months before his diagnosis because I had quite a few concerns about our boy. He hated sand, refused to get dirty, would not wear any hats, would absolutely freak out over the smallest issue, he wasn’t talking that much, his eye contact wasn’t great either, he wouldn’t respond to his name, and he was the pickiest eater I had ever seen. Everyone I talked to, family and friends, said he was fine. We started calling him a quirky guy because that best described him. Our pediatrician agreed that he was totally normal and all of his reactions are normal too. I wanted to believe her and a part of me did feel relief but the other part of me was not so convinced. As a mama, I knew that this intuition and gut feeling that something was wrong was there for a reason.

One day, we went out with friends for some doughnuts in the morning. On the drive back, Fenix’s sandal broke. He LOST it. He was hysterical, screaming and crying. He just kept saying, “shoe! shoe! shoe!” I could not understand why something so trivial could produce such intense emotions so quickly. He cried for over an hour over his broken shoe. It was heartbreaking to see your child so upset and nothing I did could calm him down. I knew most people might look at the outburst and label him as a brat but I knew there was so much more going on. So I made another appointment with his pediatrician and I was not going to walk out of that office without getting referrals for an evaluation.

I don’t know what the doctors were going to say about our boy. I was desperate for answers and help. I felt like a terrible mother for not being able to help Fenix and I was at the end of my rope. I know Fenix felt the same way. He could not effectively communicate which seemed to result in many tantrums and tears, from both of us.

About a week before Matt’s birthday, we went to meet with a team of doctors: 2 psychologists, a speech and occupational therapists and another doctor that would facilitate everything during our meeting. We filled out form after form and I checked off a lot of no boxes which made all of my fears get worse and worse. We watched as the doctors tried to engage with our boy and it wasn’t working. After about 3 hours we left and were told to return in 1 week and that they will all meet and give their evaluations. That was the longest week of my life.

When we went back, we had the kids with us during our meeting. We sat in a room with a huge table and the doctors sat across from us. They had huge stacks of papers that they all had written their evaluations on and I knew that was not a good sign. They diagnosed him with ASD, or Autism Spectrum Disorder. They also said that he would be more on the mild-moderate end but that we won’t know fully until he receives therapy and we see how well he progresses. Then they started going more in depth on their interactions with Fenix and using terms that I did not understand and it honestly felt like a blurry dream. I was present but mentally and emotionally I was gone. One of the many things they said that I actually understood was that any children we have after Fenix will now be at a greater likelihood of also having ASD. We all looked at Emery who was about 6 months. She was a happy little butterball looking at everyone and smiling.

We left the office with tons of paperwork, including things like contacts for support groups for parents with kids of ASD. For 2 weeks we were in a fog of depression and sadness. I look back and it reminds of Harry Potter and any scene with a dementor, who come and suck all the happiness and hope from those around them. That is what it felt like. We had absolutely no idea what the road ahead looked like and we felt so unprepared and unequipped.

I started a private blog for family and close friends shortly after Fenix was diagnosed to give them updates on everything. After he was diagnosed, I didn’t want anyone else to know. I felt like we were keeping some sort of secret. The main reason we only told our immediate family and closest friends was I didn’t want anyone to treat/look at Fenix any differently. I was a super crazy mama bear that was trying to protect her cub. I felt like a raw and exposed nerve that would cry at any given moment. I was on an emotional rollercoaster that I could not get off of. Grief, sadness, loss and a pain in my stomach that I never experienced before. I would sometimes just stare at our beautiful and perfect boy and cry. What was his future like? I had so many questions and no one could give me any idea on what we could expect for our journey ahead. I felt so isolated and alone. The hopes and dreams that I had for our son were slipping away and I was devastated.

The reason why I wanted to start blogging again, particularly about our journey with ASD, was to give people hope and insight on what our life is like. The spectrum is so vast that kiddos with ASD are hardly alike. They may share common traits but you will be hard pressed to find someone just like Fenix. I want other parents to know they are not alone and that it is okay to feel those negative emotions that we were once drowning in. This diagnosis is life changing and requires you to completely change everything about how you parent that child and to humbly admit that you have no idea what you are doing. I am not an expert in any way, in fact I am just scratching the surface on everything autism related. I am simply a mama bear that loves her cubs so fiercely that I would give my life for them in an instant. I am committed to doing everything in my power to give Fenix every opportunity to succeed in life. This road so far has been messy, stressful, and heartbreaking but my gosh has it been beautiful. Our boy inspires me every day and I am so dang blessed to be his mama.

I know this post wasn't super uplifting or rainbows and sunshine but it was a time that was super important and critical. It is okay and completely normal to go through that stage of grief and it is a part of our road to healing. Pain and heartache are a part of real life and I feel like without acknowledging it, I am not giving an accurate portrayal of the process as a whole. There will be a lot more posts dedicated to the amazing things our boy can do and I can't wait for all of you to get to know one of the most interesting person I have ever met.

 

I hope this blog and our boy inspires you too. To not let others tell you what you can or cannot achieve, to face your fears and overcome them, to push yourselves to the limit and to dream BIG.

Thank you from the bottom of my heart for reading this.

xoxo Tahnee