I Am

I Am

Music is one of the main ways I deal with the ups and downs of life – it always has been and I imagine it always will be. Playing the piano has always been an outlet for me and I always feel emotionally recharged when I’m done. I soak up lyrics like my life depends on it. So when I faced the life changing experience of special needs motherhood, I found some of my greatest comfort through playing and listening to music and finding lyrics that helped me through my journey. Chloe, probably by default, also loves music. Before we had her seizures under control, one of the only things that stopped her from screaming would be laying right by the piano while I played it. A neurologist once told me the different vibrations are probably what did it. Needless to say, I did a lot of piano playing in those early months! We also got her involved with music therapy that we still use to this day. Many different songs have helped and inspired me (and continue to do so) through a lot of different rough times. Music to me is like breathing. I don’t get tired of breathing and I don’t get tired of music. ~Ray Charles When a song comes together with awesome music and lyrics that touch on a subject close to my heart, it immediately becomes a favorite. That’s what happened with this song, I Am by Vinyl Hearts. Inclusion has conceptually been important to me since I can remember. The older Chloe gets, however, and especially the more she recognizes her differences and feels sad...
Life is Better With Friends

Life is Better With Friends

Keep in mind, I am not a child psychologist or social scientist. I am, however, the mother of a little girl with special needs and I care a whole lot about her being included in social situations and having genuine friends. I have encountered some positive experiences with other children reaching out and including Chloe and watching her enjoy those relationships and experiences has been a delight! Abby is a little girl in our previous neighborhood who, when riding bikes or walking past our house, liked to stop and see Chloe. During these short visits, we found out Abby was learning to read and we told her how Chloe loves us to read to her. Abby’s mom suggested Abby come read to Chloe once a week. So that’s what Abby did. Both girls loved it! We all looked forward to our weekly book readings. Abby’s mom would help her pick out different books at the library about things Chloe liked — princesses, animals, cars…. we let Abby borrow books of Chloe’s so Abby could learn to read them as well. A real friendship developed and Chloe always looked forward to her visits from Abby! Abby invited Chloe to her princess birthday party. I was so nervous for Chloe to go, thinking she might get left out or have sensory issues, but neither happened. The other girls were so sweet making sure Chloe got included getting her makeup done and nails painted. When they played with the parachute and danced, they made sure there was room for Chloe’s Cinderella “carriage.” This was one of Chloe’s favorite parties ever! At the princess party, Chloe met...
Wait and See

Wait and See

Because I am so open about Chloe’s conditions via blogging, Facebook, Instagram, at the store, at restaurants, you name it… many people reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. Friends of friends have been referred to me for questions and support on occasion. I’m glad to be of any help I can, though it’s very limited. One time in particular, I remember corresponding quite a bit with one mother whose experiences with her child reminded me a lot of our experiences of first learning about Chloe’s condition and all the frustrations we had during that process. This sweet mom kept asking me what to expect. “Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don’t think she’ll need a wheelchair, do you?” I found myself giving the response that used to make me cringe. “You’ll just have to wait and see.” Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn’t want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a few years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it’s the truth. You just don’t know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am seven years later echoing those words I used to dread yet heard so often. “Wait and see.” To which I...
A Note From a Stranger

A Note From a Stranger

I simply LOVE to share great examples of acceptance from the community and boy did I hear about a great one recently. Prior to eating a couple at an Italian restaurant desired to pray to bless their food. They asked their waitress, my friend Emily, if she had anything that she would like them to include in their prayers. In the four years she has worked there she has only been asked this a handful of times, maybe 3 or 4, and this was the first since her daughter Kinley’s birth in January. Kinley has brain malformation. Her future is unknown but, like many special needs mothers, Emily has learned to celebrate Kinley’s successes and take things a day at a time. Emily saw this as a great opportunity to spread awareness. She briefly shared Kinley’s story and thanked them for the offer. Extra prayers never hurt anyone. After they left she returned to the table and found this note. It reads: Emily, We don’t always understand why such precious, innocent children have to suffer in this life but I can tell you that God loves you both so much. I pray that you and Kinley will have a blessed full life together. Our daughters also has a medical condition and yet God is so faithful & continues to provide. Never lose hope – the doctors are limited but God is not. Jesus died for our sins – that doesn’t mea our current lives will be easy – only that our future is secure in Him. *God bless* What a beautiful note from a couple who had been strangers to...
Examples of Acceptance

Examples of Acceptance

We want you to find this blog full of helpful information and resources. We want you to be able to come to us with questions and comments and have this be a place for you to find new things to share with your friends. Along with that, we want you to come here to fill your heart. Occasionally we will be sharing small stories of acceptance, things that we have seen in our community that warm the heart. Recently a friend of mine posted a picture of her daughter Madelyn diligently working on an end of the school year self-appointed project. Every night her five year old would pull out her big bin of beads and work diligently to make bracelet after bracelet. She declared that she wasn’t going to stop until she had made bracelets for every child in her class. She set off each day with three or four bracelets in her back pack to hand out to her school mates. Adorable right? After a few comments had been made about how thoughtful this was her mom volunteered even more information, and information important to us. There is a child with Down Syndrome in her class and this child has sensory issues. Aware of this, though too young to know exactly why, this sweet girl took special care to only use smooth beads on the bracelet for this classmate “so the bumps wouldn’t bother her when she wore it.” Get out. This story made me want to jump up and down with excitement. To be aware of another child’s special needs and to make special accommodations? Outstanding!...