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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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The “Theraplay” Easter basket
With Easter approaching I decided to come up with a list of basket ideas that do double duty! Not only are they fun, but they provide a purpose. I am always searching for toys that also help our son in his development. He is much harder to buy for since we cannot simply look through the toy section and pick age appropriate toys, or grab a box of Peeps (yum!) and a chocolate bunny. I always need to put so much more thought into what we purchase for him. Pop Toobs – These are great at getting two hands/arms to work together! They help work on arm strength, while making a…
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The other end.
I vividly remember diagnosis day. I recall scouring social media and connecting with families from across the globe. I watched videos of other children affected by congenital disorder of glycosylation. I soaked up words of advice and encouragement. I thought I knew what our future would bring. The one thing I wasn’t ready for was the spectrum of severity. I wasn’t prepared to be severe. I’m going to be honest and tell you that there are so many days I feel inadequate. I feel like I’m not doing enough for our son. I question that we should be doing more, I wonder what else there is out there. I search…
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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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In the weeds
I recently read an article where the writer was a mom of young kids and her life revolved around them. She was trying to explain and apologize to her friends because she was “in the weeds.” She was too busy caring for her little ones who required so much of her to be a good friend. She felt bad for not responding to emails or phone calls. And she reminded her friends that it won’t last forever. My immediate thought was it will for me. The season of our son requiring everything of me isn’t going to end anytime soon. He will need me to tie his shoes year after…