Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow “outsiders” to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe.
Someone I love has taught me about love, and the really important things in life.
It amazes me how much you’ve grown the past few months. Your walking is improving so incredibly you’re almost running now. You’re talking more and articulating your words, eating independently, and hopefully we’ll start really potty training soon. Love you little man, I am so proud.
Bow Headbands, in a large array of colors available in my store.
Having a bow lot sale in my store! Discounted bows + a flat rate shipping price for the set. No extra fees, plus a sale. There’s only 8 lots, first come first serve. Happy shopping xo
Our best Christmas yet. You finally got a tablet for therapy, lots and lots of toys, books, a new piano, a convertible, a giant bear, shark and wolf. Here’s to our most successful Christmas, another 5 years for your daddy and I, and a wonderful New Year of experiences and love together. Cannot wait to see what 2013 has waiting for you my dear.
This month has been so incredibly crazy and super busy and I’m working on some new stuff again, wrapping presents, cleaning, entertaining Sky all at the same time. Busiest December I’ve ever had. Here’s a little sneak peek at some new infinity scarves. Which ones your favorite?
The big bow turban headband now in my store! Perfect for Christmas, and will be available in a few new colors next week ;)
Coffee Sleeves! A great stocking stuffer, available in my store for $8 a piece. Fits all Dunkin Doughnuts & Starbucks coffee cups :)
New satin bow clutches available in my store. Seafoam, pink, emerald, ruby and gold.
Botox round one. Woke up at 4 and left at five yesterday. We arrived and my poor Skylar already knew what was going on and wanted to leave. They took us back almost immediately and Skylar started having a meltdown in preop. All the other children screaming were scaring him. Fortunately we had the same nurse for his eye surgery and she gave him her badge and some things to color with (and I brought bubbles). Everything was and went perfectly besides our anesthesiologist, who had no idea how to put an IV in apparently. The procedure only took minutes, and they only had to give Skylar the gas. He gave him 4 shots of botox to his left calf muscle, two in the upper quadrant and two in the lower. They called me back and he was calm, and smiled at me. I sat next to him and held his hand while he ate a popsicle and sung to him. They transferred him into another room and we left shortly afterwards. He was himself on the way back home, talking up a storm and dancing in his seat. 6 hours never seemed so short in a hospital, and you did such a wonderful job Skylar. Went way beyond my expectations.
A big thank you to Dr. Baynham and the nursing staff at St. Marys Hospital. So proud of you Sky, I cannot wait to see the results. xo
Most days I am overwhelmed, but more than happy to share Skylar’s story with strangers. Another person aware is another person educated. Although sometimes from the bottom of my heart- I wish people wouldn’t say anything. I went to Hobby Lobby the other day to pick up some last materials so I could list everything in time for Christmas. I put Skylar’s shoes on before we left and when we arrived I held his hand and he walked all the way into the entrance. My heart warmed, as he laughed because this was the very first time he walked anywhere by himself in public. I did not have to carry him, so I smile as I grab the cart and a woman standing in line tells me to come over to her. Unsure of what her intentions were or what she wanted I just walked right over. She told me about her niece and how she walked just like Skylar with his one foot extended and it was because her, “dimples in her back were not aligned”. All they did was bring her to a chiropractor and they adjusted her and she was back to normal. Just like that in one visit. I then unfortunately, had to explain to her Skylar’s diagnoses, and how he’s similar to a stroke victim, how he has paralysis on one side of his entire body and his spasticity in his muscles is why he walks like that. I told her that he was getting botox injections in his left calf muscle so we can get his foot flat and he can walk better. She then continued to completely disregard everything I just told her, and told me I just needed to bring him to a chiropractor and it would go away.
Anger set in, because this woman just did not get it. A millions things went through my mind- oh, that’s all I have to do, just bring him to the chiropractor and it will be okay? Will it make his brain grow? The paralysis and all of his problems will just go away?
I just walked away in silence, regretting walking up to her. I really wish sometimes people wouldn’t say things to me at all.
Finally happy with the finished design. Decided to go with satin, better feel and much easier to clean than linen. Will be up soon in my store with more colors, so excited for the holidays! :)