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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
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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The good ones
I don’t know how you do it. I don’t think I could. When someone says these words to me I almost immediately want to respond with you could. But then I remember what the nurse in the hospital said to my husband and I when we had our 3 month old son. She looked at us and said your boys are so blessed to have you, you are some of the good ones. She went on to tell us how there are many times as a nurse she is afraid to send a newborn home with their parents. So this got me thinking… I know quite a few of the…
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Teeny tiny self care tips
Self care isn’t exactly something on the top of my list. I know it’s important and people are always reminding me to remember to “take time to yourself.” If you are anything like me this can be extremely hard to do. I usually make sure everyone around me has all that they need before I think of what I may need. I am the opposite of high maintenance. I pretty much am just maintaining. 😉 I know that so many of us don’t have the time to get out for hours without any kids, and even if you have the time there so many other reasons why you can’t! Finances…
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A Valentine for my Village
It takes a village. A tribe. A family. Raising a child with special needs isn’t easy, but having supporters, near and far, make the journey a little easier. Your village may consist of 5 people or 50. Your tribe may be filled with online friends or a local community you see face to face. Whoever makes up your village is irreplaceable, I know mine is. Valentine’s Day is typically romantic, filled with chocolates, hearts and roses, but I’d like to express my utmost gratitude for our village on this day with nothing but words. Happy Valentine’s Day to our village. I love my tribe. I love our family. My life…
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Still here
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Reminder for the new year
Our van door wouldn’t shut all the way the other day. It wouldn’t latch when it closed so the interior lights would stay on and the buzzing wouldn’t stop. It was annoying, frustrating, and a huge bummer! I really didn’t have time to get it into the shop and I had to cancel a couple of appointments because I was afraid of having a dead battery, not to mention it was probably unsafe. My husband was more angry than I was. He focused on it and said something like “why can’t we catch a break?!” I looked at him and said “are you kidding me right now? We caught the…
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The waiting
Minutes after our newest addition was born I held him in my arms and I started looking him over. I started searching for symptoms of the genetic condition our 4 year old has. I felt like I would just know if he was affected or not. As my husband looked at me and asked about his eyes, I said to him “he doesn’t have inverted nipples.” The nurses in the room were listening and looked at us a little peculiar. I’m sure they wondered why we were picking our beautiful boy apart looking for something “wrong” with him. I told them that we were looking for clues as to if…