• life lessons

    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…

  • life lessons

    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…

  • just for fun

    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…

  • life lessons

    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…

  • life lessons

    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…

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    On mandarin-orange chicken day

    Our son recently started using a communication device, his “talker”, to communicate with us. As many of you know, he’s medically complex with special needs and he is nonverbal. He’s getting quite good at telling us he’s “all done” or if he wants “more” of an activity. We were with family the other day and we were using his talker;  I was asking him if he wanted more books. Upon asking him this and presenting him his communication device a family member said “how does he know what more means?” 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 wasn’t 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. Isn’t 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 I’m growing. I can see my belly growing and I lose count of the daily trips to use the restroom. He’s happy and thriving. Inside. But outside, that’s 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 wasn’t going to cry. I didn’t 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, with very low muscle tone and cannot sit alone, stand, or walk.  He’s 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 vocal while flailing his arms and…

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    “As long as it’s healthy.”

    *Disclaimer: I did not write this to get into any debates, so please refrain. This is my blog. My feelings. It’s okay if you feel otherwise. Please respect my feelings/opinions and I will return the favor. In my pregnancy, you will never hear me say “as long as it’s healthy.” Don’t get me wrong. We all want, wish, pray, and long for a perfectly healthy baby. But what if there wasn’t that guarantee? What if you knew there was a chance your child’s life could be a difficult one? What if you knew that chance was 33%? According to the genetic counselors we have spoken to, our child has a 33% chance…