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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. š 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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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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The good ones
I don’t know how you do it. I don’t think I could.Ā 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 isnāt exactly something on the top of my list. I know itās important and people are always reminding me to remember to ātake time to yourself.ā 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. š I know that so many of us donāt 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 canāt! Finances…
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A Valentine for my Village
It takes a village. A tribe. A family. Raising a child with special needs isnāt 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. Valentineās Day is typically romantic, filled with chocolates, hearts and roses, but Iād like to express my utmost gratitude for our village on this day with nothing but words. Happy Valentineās Day to our village. I love my tribe. I love our family. My life…
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Reminder for the new year
Our van door wouldnāt shut all the way the other day. It wouldnāt latch when it closed so the interior lights would stay on and the buzzing wouldnāt stop. It was annoying, frustrating, and a huge bummer! I really didnāt 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 āwhy canāt we catch a break?!ā I looked at him and said āare 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 āhe doesnāt have inverted nipples.ā The nurses in the room were listening and looked at us a little peculiar. Iām sure they wondered why we were picking our beautiful boy apart looking for something āwrongā with him. I told them that we were looking for clues as to if…
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On mandarin-orange chicken day
Our son recently started using a communication device, his ātalkerā, to communicate with us. As many of you know, heās medically complex with special needs and he is nonverbal. Heās getting quite good at telling us heās āall doneā or if he wants āmoreā of an activity. We were with family the other day and we were using his talker; Ā I was asking him if he wanted more books. Upon asking him this and presenting him his communication device a family member said āhow does he know what more means?ā I had to take a deep breath. I had to think of an appropriate response, to be honest, I was…
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I think…
I would be lying if I said I wasnāt a little bit scared. A little bit nervous, okay, maybe a lot. To be honest, not thinking about it is easier than thinking about it. Isnāt that a strange way to talk about a pregnancy? Let me explain. I know I have a beautiful wonderful child inside of me who is already loved beyond measure. I can feel his flutters and kicks; an amazing gift of the life Iām growing. I can see my belly growing and I lose count of the daily trips to use the restroom. Heās happy and thriving. Inside. But outside, thatās where my thoughts always drift…
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