Monthly Archives: February 2016

Struggles are real

I feel comfort in words. In my own words and the uplifting words from others. When I hit a low point I have to have an outlet and when I write I feel a level of relief. This blog began as a continual way for me to update all those on the current happenings involving Colbey Raye. Hospitals stays, seizures, surgeries etc. a documentation of her journey, a journey that is still new, fresh and ever changing! But just as much as this blog is about Colbey, it is about my family, my husband and myself, and how her journey is just as much ours. The effects it has on her as well as on us. She is a constant in our lives as we are in hers.

The past few months have been a struggle, the emotions are everywhere and daily challenges are always present. I have to give her a grand amount of praise! She is walking! Non stop, all over, every where we go she is walking. She does not want to be held when we are out and about and she’s determined to walk as much as any other child does. This comes with its challenges, and the enormous fits that fallow when I place her in the shopping cart are overwhelming, but I wouldn’t trade them, because she walks and she deserves that freedom! Her new found independence is a great tool for her, and has helped improve other areas such as speech, understanding and awareness of her own body. She runs into less walls now, can (most of the time) catch herself from falling and or will sit down before the impending fall occurs. It is truly amazing to watch these improvements! 

But along with all these wonderful new things, have come some hard and challenging ones. I think these negative events have taken the biggest toll on me. When the emotional meltdowns occur I’m heartbroken to see her in those moments. The hitting and screaming, uncontrollable crying, anger, range and I cannot help or fix it for her. I’m at a loss and feel helpless. Once her flip is switched I struggle to turn the events of the day around. “This cannot last for ever” I keep reminding myself. Her siblings take a hit, literally, and I struggle to find the equality needed to bring peace to them as well as to her. It’s constant, daily and I’m beginning to feel a little week and run down from this extra trying time.

Everyone is amazed with the wonderful progress she is making, and those who rarely/less often cross her path are completely blown away by her wonderful new ability to walk and I am too!! They always say “wow! She’s doing so wonderful.” And although I agree, my response is hesitant, yes she’s doing amazing and I’m so happy!! But only those closest to her have seen these new trying times in true form. My self, the family and her therapists witness the daily challenges. But Colbey Raye is driven by new faces and social gathering, and I’m beyond thankful that a trip to the grocery store is calming for her. Otherwise we would never leave the house… Sometimes I think to myself I shouldn’t post this because it’s some what negative. But it’s the reality we live in with Colbey Raye, and a huge part of her journey at this point in time. The struggles are real, they are constant, and the weight is heavy. Struggling to find the right way to discipline, how to correct the behavior and how to stand strong in a moment when I feel so week. She’s my greatest blessing, and my biggest challenge.

I thank God every day for giving me this little girl. I love her so much, more than any other mommy ever could, and I know hard times come and hard times go. I wouldn’t trade her, I wouldn’t change the person she has helped me become. And I pray I can be the best mommy to her because only I can do this job, and I’m determined to do it well. 
 

When a dream becomes a reality

  
This will be quick and short as I know my time with only one awake babe is limited! But I just have to take this moment to express the truest, deepest feeling of joy and gratitude. A dream has come true in our house! One I’ve hoped and prayed for, but also one I’ve felt (at times) may never come. This morning, as I stand in the kitchen making oatmeal for breakfast (one of the kids favorite breakfasts!) I heard the thump thump of a bottom scooting down the stairs followed by the pitter patter of tiny foot steps coming down the hall. I knew who it was, but the sweet tiny “mama?” That followed confirmed it, Colbey Raye was awake! She woke up, got herself out of her bed (a mattress on the floor) opened her own bedroom door, scooted herself down the steps and when she got to the bottom of the stairs she stood and WALKED into the kitchen! My baby walks! She walks. Sometimes I say it over and over again because it’s just to wonderful to almost believe, I may have pinched myself once or twice to make sure this wasn’t a dream. But it is real, it is here, the moment I’ve prayed for, a turning point for Colbey Raye, she walks. And she does not walk occasionally, or a little here and there, she WALKS all day long every day for the past week.

I cannot begin to thank all of her therapists enough for the time they spend with her, loving her, helping her, encouraging me! And pushing through those tough, hard days that come with a special needs child. They are amazing, and they are a blessing to my life and Colbey Rayes I never imagined! By her will, my prayer and their efforts this little miracle walks! Thank you Annie, Brenda and Nancy for all you do and have done!