It has been a very dark and hard health journey over here. The emotions have been high – actually, the emotional swings were as if we were riding on a metronome a toddler was swinging around. After realizing that my child was not doing okay, I not-so-jokingly toyed with the idea of checking myself into a mental ward for a vacation.
That comment is not funny – nor is it meant to be. I reached out for help (do you know how hard it is for a mother to actually tell people she’s on the verge of losing it?) and asked to have the kids entertained away from the house.
I asked for help.
Read that again.
I didn’t get that in-person help, and instead I had to wade through the mud and into the quicksand while trying to keep it together and not breakdown in front of the kids. (PS – I failed, miserably.)
I am so grateful for my husband who did see me and helped as much as possible, of course. We talked every day after he got home from work, and he supported the best he could. He offered to stay home – and did take a ½ day to let me breathe. But I was drowning and searching for that real, in-person village – that life float that was supposed to be the answer to everything hard in motherhood. The thing we are all told is needed.
That village is bullshit. It’s broken.
Anything more than a food chain, a gift, and maybe a glass of wine is too much to ask for.
When things get REALLY hard you are it – it’s on you to figure it out.
Through this I prayed. I prayed and prayed. It wasn’t until this weekend that I had a clear answer.
I was intended to mother these babies. ME – not a village.
I have everything within me. No one can do better by my children than me. When the hardest, darkest days feel all-consuming, I have it within myself to not only handle it – but to heal, grow, and thrive with all I am given. I do not need to be more. I do not deserve better. I do not need to run away. I NEED to be the mother I was created to be.
We are living in a culture where mothers are being told they aren’t enough; they deserve more; they need to put themselves above all else to be happy. That the only way to be a good mother is to put their wants and desires above all else.
I’m here to say that is not true. Motherhood is messy. It is gritty and hard, and it is OKAY to normalize that.
Turn it all off and reconnect with yourself and God. Pray for knowledge, support, and love. He knows what you need and when you need it.
He did not bless you with children you are not enough for.
Turn off the outside world and refocus on the happiness you already have.
You are not meant to put your wants above your children during these challenges. You are meant to double down and not run away.
If our society would start emphasizing the true needs of families, real support would be happening without question – without asking. It would be natural.
I made it through this hurtle. I felt like I was close to breaking. I needed to share.
I need you to know that you can rediscover happiness after it feels so far gone. You will find it – feel it – live that happiness, but in the hardest moments, dig deep and be that mama you are meant to be. Your babies need you.
If you know anything about PANS/PANDAS, Lyme disease, MCAS, and all of our other diagnoses, or if you have followed any of our journey, you may understand why I haven’t shared much in quite a while. When you have a child’s eye swell shut for no reason (Mass Cell Activation Syndrome), be screamed at and harassed and followed for 3-4 hours at a time over something as simple as a waffle, or change your plans yet again because of emotional mood swings, it becomes a struggle to find the motivation to smile each day.
Finances are tight and the out-of-pocket doctors, supplements, and prescriptions are (more than) a lot. I sucked it up and called for another appointment in shear desperation. I was told to cut everything cold turkey. EVERYTHING. The panic that I felt was all-consuming. It would be for 10ish days to clear the system before a round of bloodwork for Emmett. We would follow the antihistamine diet, as well. We wanted a clear vision of bloodwork to see what the #(%)Q$ was happening with our boy.
It is day 20, and we are all okay. We are actually smiling, laughing and dancing in the kitchen again. We made it to day 10, had bloodwork taken and were told to continue off everything if Emmett was tolerating it all. He was and still is. I am at a loss and cannot explain how or why, but I will not complain!
We have had a few tears and hard moments, but absolutely nothing like our daily breakdowns from a month ago. We are still awaiting the lab work results, but we are praying that we may be entering the other side to all of this – to 11+ years of this.
My thoughts on why Emmett is doing so well:
- We started on more intense treatment in December and never reached a baseline, maybe it was a sign he didn’t need as much – or that a big push was enough to help but didn’t need continued?
- We gutted this house over 8 months ago and have dealt with the construction dust fallout from that. We believe it has finally all settled, and my OCD cleaning may be paying off. Perhaps we are 100% living/sleeping mold-free.
- We put in the saltwater pool (sans heater) and the kids jump in every single day. The cold salt water is helping (healing!) the nervous system.
- We got rid of 90+% of our things from our previous homes (literally every holiday decoration, bedspread, pillow, and stuffed animal…) and replaced with new items. (I don’t recommend the immediate replenishing though – or you’ll be eating rice and beans like us for the next few years to pay it all off.)
- It’s warm outside. Our bodies struggle when they are cold. We struggle to even stay warm (it’s why you’ll always see Emmett in a sweatshirt). The warmth is healing.
- Vitamin D… We are outside playing, doing schoolwork, soaking in that sunshine’s magic.
- Ocean Air… Living so close to the beach has to be healing.
- Prayer. Somehow it always comes back to prayer.
After I begged for help, John and I realized it was all on us – which is what is actually meant to be, right?
I spilled my heart to friends (who were too far away to help in-person, but who were truly my saving grace in the moment while walking the dogs miles at a time just to breathe alone each day). They blessed me with prayer and motivation. Maybe that’s what today’s village looks like.
Do I know what tomorrow will bring? No.
Do I know what the lab work will tell? No.
Do I know much about anything? NOPE.
Do I know that I am hands-down the greatest mother for these little people?
They are meant to be mine. I will never take them for granted.
I learned that the village of help isn’t what a mother needs. A mother needs to feel supported so that she can do what she is meant to do. No one knows her babies like a mother does – no one.
We need less self-love, less selfishness, and far more mother-love.
Way less self-love.
Way less selfishness.
Way more mother-love.
It could heal the world.