Confessions of a Special Needs Mama

Motherhood, what comes to mind when you think of it? Baby bottles and pacifiers? Sleepless nights and frustration from lack of latching? Maybe not, maybe you think of the little coo's and sweet new baby smell. The first steps and first words, all the precious moments.

Thinking back to the day I found out I was pregnant (in a Walmart bathroom at that) I remember feeling so nervous and unprepared. I binged watched all the tv shows I could find about motherhood and thought I had a good idea what to expect. I wish I could go back in time and tell my younger, inexperienced self that motherhood isn't a one size fits all, that no one is a perfect mother and we all struggle.

Hi, I'm a special needs mama to a very handsome 3 year old! I confess that at my son's birth I did not feel that warm, tingly love at first sight feeling that you see so often in movies. I do not think that makes me a bad mother and it's something I found a lot of mothers experience as well.

I suffered from postpartum depression until he turned 2 years old which is hard to admit but hey we don't judge here right? It didn't take me too long to start enjoying the little things he did and eventually the feeling finally came!

I admit that at the beginning I did the dreaded comparing. I compared my friend's children's milestones to my son's, I smiled and congratulated them for their babies reaching milestones when really all I could think of was "will my son ever be able to do that?" It was incredibly hard not to compare because I feared my son was already being excluded.

I confess that it took me some time to accept the fact that my son has special needs and there is nothing I can do to change that. We didn't find out anything was wrong until he reached 3 months of age and his pediatrician noticed he wasn't acting properly according to his age.

One referral to the neurologist was the beginning of many countless specialist appointments and too many doctors to remember their names. I confess that when I imagined motherhood it didn't look like this.

Now don't me wrong, I wouldn't change a thing about my boy. He is the most motivated and hardworking 3 year old I've ever met! When you think about motherhood, generally you think the mother's do all the teaching but really it goes both ways.

My son has taught me so many important lessons in our 3 years together. For example, he taught me that motherhood doesn't look the same for everyone. Not everyone has neurotypical children who reach all their milestones on time. Some kids don't reach their milestones for a few years, some don't at all.

Not every mother packs typical snacks for their children. Some mother's pack tubes and some pack formula for their three olds still. Some children occasionally have pediatric appointments while others have multiple therapists and specialist appointments weekly.

One of the best lessons that he has taught me is that I can't always be in control of situations. Being a perfectionist with ADHD (ah another confession) I like to plan ahead to lessen the risk of things going awry.

But sometimes God has different plans and things go differently than anticipated, leaving me feeling helpless. But it is those very moments that teach me I can't live my life trying to plan each step I will take. I need to live in the present and cherish each moment.

Back when we were waiting for his genetic testing to come back I received an email from his neurologist that I'll never forget. We were three months in, awaiting results, when his neurologist thought It would be helpful to send a list of possible conditions.

I won't soon forget the sheer panic and distraught I felt after reading that list, for every condition on that list had a shortened lifespan. I remember crying out to God to help me because I couldn't bear the thought of losing my son. Thankfully a few months later we got a diagnosis, Desmosterolosis (a rare genetic disease) along with Cerebral Palsy.

My boy was the tenth diagnosed case worldwide. There is not much known about this disease and what the future looks for individuals with it but we are positive things will work out! So, Instead of sulking when things go differently I now look at them as an opportunity to learn and adapt instead of letting it overwhelm me.

I confess that I'm not a perfect mother and I'm really just winging it! I still get scared when he gets sick because I know that there's the risk we'll have to go to the ER to get fluids and other things. I still find myself wanting to yell when I get frustrated. I make mistakes, am hard on myself and I get worried about the future. I occasionally worry about how things will be when he starts school. Will he be accepted? Will he make friends? What happens after I'm gone one day?

I confess that motherhood is hard but I will never give up on my son and I will always be his biggest advocate! Thank you for reading!