Month: February 2020

Motherhood

Our New “Normal”

by Melissa4 Comments on Our New “Normal”

This week is normal; in fact it is so normal that it actually feels abnormal. We don’t  have any doctor appointments, therapies, or specialists. I’m not expecting any phone calls for scheduling or testing or updates. It is just a plain old week. And as much as I should enjoy it, it feels wrong, like I must be forgetting something.

Timothy sitting on the couch smiling. He is wearing a blue sleeper with a polar bear on it.
Smiley Timothy.

Ever since we started this journey with Timothy’s Leber Congenital Amaurosis (LCA) I have gotten accustomed to the busyness of it. There seems to always be something going on whether that be an appointment, or two, a therapy, a new doctor, a follow up phone call. I don’t really remember the last week I had without at least one of the above.

Although this is an unusually quiet week, I can just look at my calendar for the next 6 weeks and realize that this is the calm before the storm of all of the above and then some.

Yet something about the quietness of this week has my anxiety going wild. After shrugging it off as just anticipation for the crazy month and a half that is creeping up on me, I realized it actually isn’t that at all. Instead it is the fact that all the busyness is what feels “normal” to me now.

Having a child with special needs comes with a lot of moving pieces and I have been organizing those pieces into our lives for about 7 months now. In a way it feels like it has become our life. So when we have a chance to sit back and just have a quiet week at home it just doesn’t feel right.

This is a part of special needs parenting that I really struggle with; the right to feel normal in abnormal circumstances.

Hailey holding Charlotte to go down a slide. They are both happy.
Playtime with our girls.

I think it confuses other people who haven’t been in this situation to think of weekly appointments and a lifelong disability as being “normal” but for us special needs families we need to regain a sense of normality in our life after the initial shock of a disability diagnosis.

 I get more comfortable with Timothy’s diagnosis every day.  The little details of his nystagmus (jumping eyes) or him not making eye contact with me have become less obvious and I can go for hours in a day without even thinking about him being blind. He is just my Timothy, he interacts with me how he always has, and he interacts with the world as he always has. And to us that is normal.  

I get used to running around to all the appointments and in a way I enjoy it. Checking in with Doctors and starting new therapies makes me feel like I am doing something to help Timothy thrive.

Yes there are still days where I am completely overwhelmed by my schedule and how I will make it all work, or completely heartbroken over the dirty look Timothy got at Wal-Mart because he was going cross-eyed (which is actually called Strabismus  by the way).

A big part of acceptance and moving forward is finding our new “normal” and being able to enjoy our family fully just the way it is and that is what we are learning to do every day.

So I hope for other special needs families out there, you can also realize that we all deserve to feel normal regardless of if your “normal” is different from others.

Timothy is sitting on the couch. He is wearing a t shirt, a blue batman baseball cap, and black sunglasses. He is smiling.
Our cool dude.

Thank you so much for reading about our journey.

Motherhood

Why Me?

by Melissa3 Comments on Why Me?

Finding my place as a Special Needs Parent.

The first evening after learning about Timothy’s eyes I came home and thought “why me?” now I know that sounds terrible but it’s not what you think.

Melissa in the hospital NICU right after Timothy was born. She is wearing a hospital gown. Timothy is in an oxygen mask cuddled to her chest.
Brand new baby.

I wasn’t thinking why me because I did not want to have a child with a disability, but because I didn’t know if I could be strong enough, brave enough, smart enough, organized enough, just overall  good enough to handle everything we were about to have thrown at us.

I had seen parents of children with disabilities and the struggles they had. I didn’t know exactly but I saw how much it took out of them. The paperwork, the appointments, the testing, and the waiting. Watching your kid suffer, be afraid, cry, not understand what is going on, not be like other kids, and be bullied because they are not like other kids.

I got a sudden case of Imposter Syndrome wondering if I was ‘Mom’ enough to handle this. Timothy is my third child so I felt like I kind of had the hang of it all. At least age 0 to 5 but that was with typical children. I had no idea how to handle a child with special needs… and blindness? Well I knew it was a thing but I never had really been around anyone who was blind before.

All I knew about blindness was that Timothy would have to learn and read Braille. You know those little bumps on the washroom signs. So in an effort to rid myself of the Imposter Syndrome, I threw myself into learning Braille and I was pretty good at it too. I memorized the entire alphabet within days.

But Timothy was just 4 months old and having me know the alphabet in Braille was not really going to help the current situation. So I also threw myself into research, on blindness and on his preliminary diagnosis of Leber Congenital Amaurosis (LCA). I read about how we can adjust the house for him, how we can help make him more comfortable in new places, how I can teach him about things through talk and touch. I learned about LCA and read about all the different gene types (we didn’t yet have our diagnosis).  I also connected with tons of families. I joined Facebook groups and followed Instagram pages. I learned through others who had blind children who were a bit older than Timothy.

 And slowly the Imposter Syndrome started to fade. You know the saying knowledge is power and not only had I been gaining knowledge about blindness and LCA for months, who else was more knowledgeable about Timothy than me?

Timothy laying on his black and white playmat. He is chewing on a fabric book and has a musical toy dog beside him. He is 78 months old.
Some of Timothy’s Sensory toys.

I would go to countless appointments with different doctors who all have different specialties but they seemed to ask the same questions. Nothing seemed to be going anywhere. I know Timothy and I know what he needs and what he is ready for or not. I know where we need help. So instead of going to these appointments answering the same five questions about his growth and development I now go with my list of questions and the things I think we should be doing for him.

This is when I finally started to answer the question of “Why Me?”

Because I love my children deeply and unconditionally.  I will advocate for Timothy in every single situation whether it’s to a Doctor or a family member or a stranger in the mall. I will never stop researching and learning about all the things I can do to make life easier for Timothy. I will never stop educating others on Timothy’s condition.  I will do absolutely anything and everything to help Timothy succeed.  As I started to really think about it the better question that first night would have been “Why not me?” .

Becoming a Special Needs parent was not something I had planned and at first it was really uncomfortable for me to feel like I had anything to offer the situation but slowly I’ve discovered that I am one of the most important people on Timothy’s team. I am his Mom.

Melissa is sitting on the couch cuddling 10 month old Timothy.
Mama and Timothy cuddles.

Thank you so much for taking the time to read my blog.