I’m not a good mom. But am I enough?

I sometimes wonder if I’m screwing up my kids…. When I’m lying awake at night, (I’ve struggled with insomnia for many years,) I worry that the choices I make are somehow traumatizing our children – a bit over dramatic, I know but, I come from a long line of worriers so it’s to be expected. I’ve even thought that perhaps I should never have had kids – that I’m just not cut out to be a mom. I know I’m not alone here. Why can’t we just have a “normal” life?

I may not be a good mom. But am I enough? I’m the mother my kids got. I do believe we’re not given to people by accident – these are the kids we were meant to have. Is love enough? If you love your children from the depths of your soul, with every fibre of your being, to the moon and back, is that enough? If you won’t ever give up searching for answers, for treatment to get them well, is that enough? I hope so. I’m doing my best with the life we’ve been given. Sometimes I’m all out of patience. Sometimes I want to run away – but I don’t. Being a parent to a brilliant, special needs child has made me feel so many feelings I didn’t even know I had. This crazy, invisible-to-outsiders, make-me-pull-out-my-own-hair, fall-to-my-feet-in-tears, want-to-go-outside-and-scream-obscenities life is our “normal.”

I hope that when our children are grown up and have survived this tumultuous childhood they won’t think: “Wow! Mom really screwed us up!” Is it just this generation of mothers who so often feel like failures and carry so much guilt, or did our mothers and grandmothers feel this way too?”

I think instead of lying in bed at night thinking of the things I did wrong today, I should focus on the things I did right, and be hopeful for tomorrow. My deepest wish is for them to be healthy and feel happy and loved.

There are so many times when I feel like I can’t cope with this hell anymore. Why did this happen to us? But somehow I always do cope. Somehow I’m okay. (Even though life seems like a broken mess. I am not broken.) It think it’s called survival and hopefully there will come a time when we don’t just have to survive life – we can actually enjoy living it. Until then, I’m gonna keep telling myself – “You got this, mama! You are enough!”

There is a heaven… and a hell

I’m writing this with my second glass of wine in hand so we’ll see how this goes. And…I have at least 3 other blog posts on the go – so stay tuned, but I felt this was what I was supposed to write about today.

We have very few actual good (ok, I mean, great) days with our Panda. The last time we had a “great” day was February 26th and that was the first day in months. Yes you heard me months! ONE. GREAT. DAY in MONTHS! Pretty much unbelievable for most people. But I’m sure it’s something that other PANDAS parents are all too familiar with. It is April 6th as I’m writing this and the last “great” day we had was February 26th!!! When this happens, and you can see it is a rare occurence for us, we just soak in the deliciousness of the day as much as possible. It’s like someone has taken our son with PANDAS and left us with the lovely, pleasant, easy-going child we remember who does not have OCD, anxiety, tics, or rage. We actually feel like we’ve been transported to heaven. It’s like we have been given our beautiful happy son back, for now. Today, he was even writing his Christmas list to Santa.

When this happens, we feel lighter, freer. We can breathe again. Life is enjoyable and happy. This must be what it’s like to be a “normal” family. But, and there is always a BUT… we know that tomorrow could be hell on earth. And it was, last time, on February 27th. On February 26th, he was exposed to a friend who was getting sick and the next day was pure hell. PANDAS kids are like radars for illness. And the angel who was gifted to us on February 26th was taken and replaced by what seemed like the devil on February 27th. That sounds harsh and a terrible thing to call your own child, but deeply, sadly, it’s what it felt like.

When we have this day-in-heaven, I can completely understand why other families have loads more children. Completely understand. If it wasn’t for the fact that I have progressively worse pregnancies where I vomit so much I can’t even keep water down, and even worse deliveries, I would want more, many more, of these lovely creatures who make my heart swell with impossible love. It’s a miracle we have two children. We often joke that our son tricked us into having a second child. He was having a few good days back then and we had always wanted two children, and the experience of raising a boy and a girl – so predictable – yes. And, fortunately, 9 months later, we were blessed with our baby girl and got exactly the family we wanted. Kind of.

So today, on what was actually a pretty dreary weather day, I soaked up my happy-go-lucky sweet boy. I fully enjoyed his company, how his intelligence, insight, and sensitivity continue to amaze me. I put him to bed and whispered gratitude and prayers knowing full well that tomorrow he might be taken from us again. That tomorrow could be hell, but hoping with all of my heart that it isn’t.

xo

 

 

 

Resources

Websites:

The PANDAS Network pandasnetwork.org

PANDAS Physician Network pandasppn.org

Food Intolerance Network fedup.com.au

Can Get Better – Dr Richard Horowitz cangetbetter.com

My Kid Is Not Crazy – Upcoming PANDAS Documentary mykidisnotcrazy.com

Under Our Skin – A compelling Documentary about Lyme Disease underourskin.com

Blogs: These blogs are written by other moms sharing their unique stories about living with PANDAS/PANS

PANS Life

The PANDAS Project

3 With ADHD

Fixing Alphabet Soup

The Dreaming Panda (this blog is written by a young woman who has PANDAS)

Walking In Quicksand

Books:

Why Can’t I get Better: Solving the Mystery of Lyme & Chronic Disease by Dr. Richard Horowitz

Saving Sammy by Beth Alison Maloney

Childhood Interrupted: The Complete Guide to PANDAS & PANS by Beth Alison Maloney

When Your Child Has Lyme Disease: A Parent’s Survival Guide by Sandra Berenbaum

Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me by Ally Hilfiger

 

Scroll To Top