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Still here
The other night Christopher was looking off. His eyes were fixed and he was on his side. My heart rate picked up and I felt adrenaline rush through my body. He rolled to his back and snapped back to his smiley self. He was fine. But I wasn’t. I was back in the hospital – a year ago. I was standing outside the MRI room with Christopher unresponsive on the bed. The nurses were silent and hesitant. They had already given him 3 doses of rescue meds but the medications weren’t calming his brain. He needed an MRI but he wouldn’t stop desatting. His oxygen saturation would plummet under 40…
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The hard
Christopher and I were lounging in the pool over the weekend and I realized it was time for his Vimpat, one of his seizure medications. I asked my husband if he would go inside to grab me his syringe I had packed and a water flush. We floated over to the pool steps, I administered his medication and flush, and then we pushed off. Alexander was sitting on the edge of the pool and said “taking care of Christopher is hard.” Sometimes he says these things just as observations and no other reason. The older he gets the more and more he realizes what needs to be done to care…
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Favorite things. For me.
As promised. A list of my favorite things! I’m going to do my best and try not to have every single thing related to coffee, but I can’t make any promises. 😉 I have to tell you that one thing that has changed for me during this quarantine is that I have started to care a little bit more about me. I have tried to practice self care, even though days are crazy long and I’m exhausted. Aren’t we all? It’s been a helluva time trying to be all the things to all of the little people in the house. School teacher. Therapist. Assistant. Nurse. Playmate. House manager. Chef. And…
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Favorite things
We’ve been self isolating since March. I recently looked at my Target app and the last time I was in the store was March 13. (insert me wiping my tears here) Ok, kidding. Maybe. It’s so crazy to think that we have basically gone nowhere for the last three months. No school. No therapy. No friends. We’ve survived, and kept busy. I put together a short list of our favorite things we’ve used for the boys these last few months. Items that we were so grateful to have, use, and not get bored of. 1. This Ikea kids table has kept everyone busy at one point or another! Once you…
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Patience
It’s a virtue. Right? My entire life I have been a patient person, never getting upset in traffic or tapping my feet when the customer in front of me is telling the barista her life story after the order has been taken. OK, maybe I get a little impatient but definitely not enough to write about. I am able to put my “desires on hold for a time.” I can relax and not dwell on the situation that I have no control over. Being a mom of a child who is medically complex and severely developmentally delayed requires so much. It requires a lot more than learning medical terminology and…
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Sensory Bins Made Easy
If you follow us on Instagram you’ll know that I have a love for sensory bins. I absolutely love putting them together and sometimes, ahhhhh well, all the times, I even enjoy getting my hands in there and playing. I like messy play. Don’t hate me. But I really don’t mind the paint everywhere or the ooey gooey chia seed “slime.” I can’t remember if I was always that way as a mom, but one thing is for sure, Christopher has changed the “ohmygoshthatsabigdeal” feelings in my life. A little extra clean up is really no big deal to me. I’ve had BIG deals. We live a big deal. So,…
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Perspective
Perspective: “the ability of someone to take into consideration and potentially understand the interpretations, outlooks, or actions of their self and of other people.” (psychologydictionary.org) One of the greatest lessons I have learned since Christopher was born is perspective. I sincerely try to write and share pieces of our life simply for a bit of insight. I want people to know what our life is like raising a child with significant needs. My ultimate hope is to share struggles and triumphs in a graceful way. I never want to come across as complaining or that I’m sharing for sympathy. Believe me, your sympathy is the last thing I want. My…
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Hope
There’s something that has been nagging at me. Something that has been bothering me. CDG has a huge spectrum. It is incredibly vast. Some individuals are tube fed, some are not. Some have seizures, some do not. Some can walk, some cannot. Some can speak, some can’t. Some are in the hospital for minor illnesses, some are not. It is crazy how the same diagnosis is really just never the same. I am overjoyed for families when they share accomplishments of their children. I am genuinely happy for a family when their child takes unassisted steps. Or writes their name. Or says “mama” for the first time. And yes, there’s…
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Mine is mine, yours is yours
Raising a child with significant needs has taught me incredible life lessons. It has given me a greater perspective on life. It has taught me the importance of grace and forgiveness. And it has taught me that life is hard no matter what you’re given. We all have something we are dealing with, whether it is on display or hidden away. But the one thing that none of us are allowed to do is judge. Judge one another’s pain. Decide who has more. And decide how each other should feel. There isn’t a scoreboard that coincides with how you are allowed to feel. There isn’t a rating for the hurts…
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It really is the little things
I took it all for granted with our 8 year old, our first son. Every skill. Every single milestone. Even the tiny, minuscule things. All of it. Even the skills that I had no idea were a big deal. Transferring an object from one hand to the other. Clapping. Tall kneeling. The pincer grasp. Took all of those for granted too. Even the seemingly insignificant things. Sitting in the grocery cart. Holding a spoon. I assumed those were just a “given.” I know this sounds crazy but I took the messy parts for granted too. Potty training. Pulling the toilet paper off of the roll. The artwork on the walls.…
