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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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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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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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Nowhere else
Our family went to a pool party a few weeks ago and on our way home I texted my girlfriend to let her know I wasnāt going to cry. I didnāt have the urge to take my son and leave. Oddly enough, I felt ok, not great, not sad, but just ok. Our son is nonverbal, continuous tube fed, has severe hearing loss and wears aids,Ā with very low muscle tone and cannot sit alone, stand, or walk. Ā Heās also stubborn, funny, very affectionate, and extremely charming. He loves kisses, books, and his iPad. And when he gets excited or is content he can be very vocalĀ while flailing his arms and…
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