Accepting a new normal

I have a handful of posts I’ve started but never gotten back to to finish, so hopefully I can compile a few thoughts here and finish this to send off! Tomorrow we meet with the ophthalmologist to see what Colbey Rayes vision deficit entails, and to make sure there are no other concerns with her vision. Later in the afternoon we will be seeing a virologist to go over some information that has been more recently found. I still need to compile a list of questions to ask during this appointment but I’m not sure where to start or really what to ask. It’s a good thing I will have nothing but time between appointments tomorrow to try and brain storm a few to write down!

Today is a record holding day for Colbey Raye. It is the longest stretch of time she has been seizure free since the beginning, thirty-two days to be exact! And counting 😊. She is seven weeks post op and is still continuing to make leaps and bounds of improvement. She even has found her own little attitude and figured out how to receive what she wants when she wants it 😊. Still as sweet as can be just adding a little spice! She has began to show emotions more appropriately instead of being confused on how a situation makes her feel. She is easily frustrated when it comes to working on activities that are hard for her especially at PT and OT. Both are going really well, Colbey Raye is improving week to week and we work hard with her at home but she is easily tuckered out. Once she’s tired, after about 15 minutes, all she wants is minute or two of mommy snuggles to calm her down and then she is ready to work hard for another 10-15 minutes. Our therapy sessions are scheduled to run for 45 minutes but we are slowly trying working up to that. Colbey Raye will only last about 20-25 minutes before she’s in tears begging for me to snuggle her tight, or to nurse her until she’s calm again. She has a hard time calming herself on her own and needs some extra love before she can regroup and settle down. It does take a lot for her to get overstimulated or overwhelmed enough to be upset but once it happens she requires a short nursing or a tight snuggle. I love how snuggly she is! There is something extra special about a baby willing to snuggle all day, especially once they are 10 months any trying to be mobile! Still no crawling but Colbey Raye is working very hard to learn 😊.

Colbey Raye continues to surprise me with her progress and abilities! I’m feeling a little bit proud and excited, Monday while I sat folding laundry I decided to turn on the “Baby signing Time” DVD we own for Colbey Raye to watch. We have introduced her to a few signs, such as the sign for more, eat, all done and milk. As soon as the section about eating came on and they began to sign “more” Colbey Raye began to sign it also! I couldn’t tell until then if she knew what the sign for more really meant or if she was just clapping because I gave her food, but now I feel more confident she is understanding what these few signs we use mean. These abilities that seem like little accomplishments are huge for Colbey Raye, and bring me so much hope. She’s learning through daily activities and is retaining these useful tidbits of information. She still does not babble or baby talk so we want to help her learn other forms of communication while we work on the language side of things. I know it sounds silly expecting a 10 month old to communicate right? But there are so many forms of communication, body language, verbal cues, hand gestures etc… And generally by now little ones can communicate their basic needs and wants if we pay close attention to their gestures, our goal is to help Colbey Raye find her form of communication so we aren’t always guessing what desires she needs met.

I want to touch on a subject that can be hard to accept at times but it’s been tugging at me for a few weeks now and I just want to start by saying it is a long proses! A few weeks ago Josh and I went to an epileptic support group meeting. Josh had gone once before without me and he felt inclined to go again so we went. It was a good experience and I feel like going is beneficial to josh and I and that my insight could help others who attend. I myself feel knowledgeable and connected with others who support me but I still enjoy going with Josh and learning others experiences. Anyways, I told our story to the group, I was assured in my own statements and I felt confident in what our goals were and what I wanted to achieve for Colbey Raye. When I was finished the group was silent, and finally one said “you seem to have it all together? It’s been such a short time and you’ve been through so much, how do you do it?” I want to say I do not have it all together! It’s a proses and maybe a never ending one, but I have faith, family and experiences that help me so much. But I have to say “having it all together,” it starts with acceptance. If I did not accept this challenge things would be so much harder. If I didn’t accept Colbey Raye for who she is this would be so much harder, if I didn’t accept the responsibilities of raising and accommodating a special needs child this would be so so much harder. But I’ve accepted the challenge and in fact I’ve embarrassed this situation with open, loving and willing arms! Is it hard? Yes. Is it frustrating? Yes! Is it exhausting? Oh yes, but more than anything, it IS. And we cannot change what IS, so we learn to adapt and life moves forward. Maybe we had other plans but plans change and we learn to love it. No, I do not love the almost weekly drives to Seattle, or the worry that is always present in the back of my mind. But I love seeing Colbey Raye learn new things, and I love that we have an amazing group of doctors located only an hour and a half north of where we live! There are so many challenges when thrown into these situations, but there are so many joys to be had when in these situations as well. When you can see the joys and live for the joys, that’s when this becomes the new normal. My hopes and dreams have changed so much for Colbey Raye but they are still abundant and I still have hope that she will achieve these goals and she will have goals of her own one day as well. Even before The first time I felt her move in my belly I knew she was a blessing, but my mind could not have fathomed the true blessing she is. God made her special and I’m so blessed he chose to give her to me.

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