Life is a little different when you are Colbey Raye

Before I start speaking what is on my heart, I want to say that no matter the struggle of having a special needs child, no matter the trials and tribulations I would never trade it. There has been so much love through this, so much learning and growing and an over abundance of joy that has come from Colbey Raye that nothing could make me wish for a different her, nothing at all! But, it’s a hard road to walk.
Home, comfortable with my three little kids it is easy to watch the days come go and fade away. We play, grow, learn and have such a great time being young and spending so much time together. Austyn Jayne, a crazy, chatty, busy three year old. Colbey Raye, a butt scooting, squaker, who loves to make everyone laugh and enjoys constant attention and to be the center of attention. And baby Beauden, just hanging out, watching, growing and trying to figure this whole world out! We go about our days as “normal” is for us and love it! Our normal is different than most, medicine here, appointments there, 3 kids in 3 years and a load of love! But it’s our normal and we have adjusted and have so much to be thankful for. But, at times, when other people’s normals flow in, and other children’s milestones follow the “typical” growing pattern I can’t help but feel a little sad inside. Not just for me, not just for Colbey Raye but also Austyn Jayne. I see pictures of little ones who are younger than Colbey Raye helping their parents bake cookies! They stand on stools, hold cookie cutters and are able to participate in these activities. Things a typical 18-20 month old should be able to do! But Colbey Raye cannot. She cannot run around and play, let alone stand up on a stool to help cut out cookies! She cannot follow the other kids up stairs and enjoy playing with them, instead she is gated off and stuck to roam the downstairs with the adults. When we hang out with the cousins that are the same age as Colbey, it is hard for me to accept that Colbey Raye is not at the same level. The ones I thought Colbey would be best friends with through life just continue to pass her by and instead seem to be closer to Austyn Jayne. I envisioned Austyn Jayne and Colbey Raye playing dolls together, plotting adventures together and running amuck outside as I watched from the side lines. After Colbey Raye’s diagnosis my tears blurred the lines and my visions became a dream, one I wasn’t sure would ever come true. But I have one amazing three year old. She is the best big sister, she includes her little sisters when others do not. Austyn Jayne helps Colbey Raye to reach things, Austyn Jayne shares her treats with Colbey Raye, and wants so badly for Colbey Raye to do good! She applauds her and defends her. Yes they are sisters and fight, and Austyn Jayne gets mad when Colbey Raye destroys her castles and pulls her hair! But in Austyn Jaynes eyes Colbey Raye is more than perfect, she’s her little sister and Austyn Jayne loves her for who she is! But Austyn Jayne sees the difference in Colbey Raye. She knows she’s “younger” and has always called Colbey Raye a baby. When those around us began to get older, cousins walked, friends talked they began to to transform into “kids” and no longer were babies to Austyn Jayne, but Colbey Raye remained a “baby” to Her sister. Colbey Raye has just begun to try to use a fork, and now that she has passed her swallow study we have explained to Austyn Jayne that Colbey Raye can now have “regular” milk. Finally, The switch! Austyn Jayne looked a Beau, and said “Beau can’t eat food because he has no teeth and is a baby right?” Right! So then she looks at Colbey and exclaims “Colbey Raye is not a baby!! She has teeth!” Austyn Jayne is right, Colbey Raye is not a baby, but Colbey Raye is.
Others do not see it, they do not understand. From the outside Colbey Raye is the size (maybe even bigger) of an average 20 month old! She says a few words, and blows kisses to everyone! She points and pretends to be shy, and people view her as “normal” until they realize I never set her down. Josh and I are asked almost every time we take her out in public if she walks. When we answer no, we then get “oh how old is she?!” She is 20 months. Then, “and she doesn’t walk?” Then we have to explain… I do not want to label Colbey Raye, I do not want to hold her back or treat her as if she is different! She is such a funny, happy spirit full of charm and spunk. She is unique in the best of ways and even though she cannot do what the typical 1.5 year old can she can do so much more and is so determined! As she learns and grows and learns at her own pace on her own curve I can’t help but be truly amazed by what she can do after all she’s been through. Would I trade it? Not in a million years!! But it is okay to feel sad at times, it is okay to think about what could be different, it is okay! Colbey Raye you amaze me, and you have blessed our growing family in more ways than I ever imagined one child could. The smiles you bring us are countless, and your personality will help you soar!




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