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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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    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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    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…

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    My tips to you

    *Not my typical blog…just for fun! 🙂 Garage sale season is upon us and I think those holding garage sales need a few reminders. As a customer, I am very tired of being misled over and over. I come from a long line of professional garage sale go-ers. My mom, grandmother, and great-aunts are true professionals. I have learned from the best.   If you are advertising a “multi-family” sale there better be more than 2 families treasures at your sale.  “Multi” to me means multiple. Several. Just because your neighbor walked over with a fishing rod he’d like to sell does NOT mean you can advertise “multi-family.” If you…

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    For him.

    I sat alone in the family waiting room while our son was in the operating room and I cried. I tried to hold it in, I didn’t want the other families there to see me break down. I texted my husband, I was afraid to call because I knew my voice would break and the tears would fall. I didn’t expect this. The audiologist showed me her results of the ABR (auditory brainstem response) with a look of concern and empathy. His hearing loss nearly doubled and is now considered “severe” in many of the tones. She told me that during the test she called our son’s audiologist to let her…

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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 our family’s  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…

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    One more promise

    I was having one of those I want to crawl out of my skin days the other morning. I was feeling down about myself and my body. Definitely woke up on the wrong side of the bed. At 6:30am I already didn’t feel thin enough or just plain good enough. Good morning body shaming. I could barely put my shirt on due to the aching in my left arm. I was exhausted as soon as I stepped out of bed. I so wished I could have crawled back under the warm covers and let the day slide by. (And waking up with stronger, thinner body would have been a plus.)…