Skip to main content

The One With the Stages

I wish that, at this point, I was excited to plan Flynn’s second birthday party. I wish that I was buried in choices for theme, menu, and party favors. After all, that is my realm. In our world - the world of having a child with special needs, however, a child ages out of early intervention at three. Turning two is the starting line for preparation to enter the school district, timelines, countless life-altering decisions, and paperwork. I am dreading two for everything aside from the typical reasons. I am ready to embrace the "terrible" twos, but I need to catch my breath before venturing into this unplanned, isolating, seemingly uncharted territory.

Before becoming Flynn's mom, I thought I had prepared myself in every way that I could aside from caring for an actual child. I read all of the books, articles, and blogs, joined groups, and took classes. Does that actually make you a better parent? I don't believe so. I'm not even sure that it really prepares you. What I am sure of it that none of those things prepare you for an atypical experience, like that of raising a child with a disability. On top of everything else, it's a life of vocabulary and medical terms, laws and regulations, obstacles and setbacks, and countless tests and appointments.

I've gone through many stages, but I’m no longer angry. I’m no longer sad. I’m just tired. I'm physically, mentally, and emotionally exhausted. Life doesn't stop and allow you the time to conquer these obstacles. Time doesn't pause for you to simply enjoy being a parent, and there are never enough hours in the day. All of my energy goes into showing love, pride, patience, and compassion all while trying to accomplish all of the “extras” that we need to accomplish in our daily life.

Being the parent of a child with disabilities is so rewarding. I have been granted the gift of love and life and endless gratitude. I have learned how to be a mother and an advocate, all thanks to this tiny little soul. I wouldn’t trade this life for anything because I’m right where I need to be. I just need a hug.

Comments

Post a Comment

Popular posts from this blog

The One With The Intensive Care Unit, Part Two

After being admitted to the ICU, I was a patient for another eight days. My memory is a bit foggy, but I do remember being woken up every hour or so for neurological tests (squeezing the nurse's fingers, putting my arms out in front of me, smiling, pushing my feet, and sticking my tongue out). I didn't mind being woken up because if I had more control over it, I would have never slept. I just wanted to get up and see my baby; however, I honestly could barely stay awake. I tended to fall asleep mid-conversation without realizing. I was very medicated, partly due to my anxiety over sleeping because my original headache happened at night. It also hurt to have my eyes open because of my newfound sensitivity to light, so I would just pass out randomly without warning. Because of the vulnerability to brightness (and the fluorescent lighting throughout the hospital), I was always wearing sunglasses which made it hard to tell that I wasn't actually awake during interactions with pe
2 comments
Read more

The One With All The Guilt

In the days that followed Flynn's birthday, I was overjoyed that I finally had the family I'd always wanted. The baby that I hoped and wished I would be blessed with was here and though he was early and we were unsure of what the future would bring, he was ours and we were so lucky to have him. Though I was once again home without my baby after my second hospital stay, I was extremely lucky to be alive and well enough to hold him again even though that meant traveling back and forth to see him. The time spent apart from my baby were the longest hours of my life. I was constantly calling and thinking about him. I sat there for as long as I physically could and whenever I could get a ride back and forth. In spite of the separation and exhaustion, I was happy. I thought it would be that simple: we had our son and I was happy. I was wrong. I wasn't prepared for the never-ending guilt that I would experience. It started in the days before Flynn was born and I still have i
2 comments
Read more

The One Where It’s Worth It

I see and hear all too often parents publicly complaining about their children. I’m not referring to the mother who voices to her friends that she is exhausted because she didn’t sleep last night or the father who admits that he feels tired after working an extra long shift. This type of venting is necessary and required to make things work. What I am specifically talking about is the parent who seeks attention because “parenting is hard” and “all the baby does is cry” or how all their child “never leaves them alone.” I find that I don’t handle that very well. I see it on social media, I hear it in the grocery store and it hurts. This has nothing to do with the fact that I think that I am a perfect mother because I’m not, nor do I think that I am. I struggle and am tired and get frustrated, of course. Why? Because being a parent is the hardest job in the world. It’s 24/7 and stops for nothing or no one. I voice it to someone close to me, mostly my husband, and I move on because my c
2 comments
Read more