It has been the longest 6 months of my life. There has been some good progress made, but Kyara is NOT at the level I wish she was at. Today was a good day at therapy. Skylar was with us and she used a Mr. Potato Head to play a game with Kyara. She put some of the body parts in the proper place and some of the body parts in crazy places. Then we used 2 switches (a "yes" switch and a "no" switch) for Kyara to tell us if each body part was in the right spot. For example, Skylar put a tongue where the eyes should be. So we asked Kyara, "Is the tongue in the right spot?" She would then have to press the "no" button to answer us. Kyara did great! She got ALL of the right! I guess that answers the question as to whether she can see or not! At least during this exercise, her vision was good enough to tell what that crazy Mr. Potato Head looked like. Kyara also nodded an appropriate yes to a teacher at the new school we are looking at sending her to next year. This is a new thing. I think she is getting stronger and better head control and maybe nodding will be easier as she can control her head better. I hope so. That would be great.
Kyara is still vocalizing ALOT. At first I was really happy to hear her make noise, and now... not so much. Sometimes I would love some peace and quiet. The vocalizing...communication...screaming...crying...whatever you want to call it, is a little frustrating to deal with day in and day out. I can't imagine what she must be going through inside her head. It must be terrifying and frustrating to have lost her independence. She was always a very independent child. But, being the mother that is trying her best, and unable to figure out how to help, is heartbreaking as well. I have been taught a lesson from Skylar, though. She takes all the screaming and crying in stride. I don't know how she handles it so well. So I asked her, "Does Kyara's crying bother you? It's ok if it does, because it bothers me alot, too." Skylar looked right at me and said "Yes, but that is the only way she knows to talk." Wow. At times I think I lose perspective. Kyara is not crying to get on my nerves. She is not trying to drive me crazy or to tears. She is just trying to communicate with me. I need to take a deep breath and not let it get under my skin.
It has been 6 months since Kyara's anoxic brain injury. 6 months since I heard my daughter's voice, 6 months since I have seen her smile. It has been 6 months since our world got rocked. I miss Kyara more than words can say.
This is a picture of Kyara in the pre-op room 5 minutes before I took her to the surgery room for her to have the dilatation done. This is the last picture of Kyara before the anoxic brain injury. The last picture I have of her smiling...I pray I will have more smiles in the future.
9 comments:
Thank you for your honest thoughts and feelings through this tough time. As a parent and as a professional who works with kids with delays and disabilities, your blog has been eye-opening, heartbreaking and hope-inspiring. You are not alone.
-Alison
Leave it to a child to remind us of the things in life that are so important! Go Skylar!!! Genie-I often have kids that cry at work trying to communicate and after 12 hours I want to scream, so I can only imagine what you must feel like day in and out. I pray that Kyara is able to find her voice again, mainly so she can have some peace and you can her your baby's voice again! Those therapies sound amazing!!! Have you thought about a fundraiser to raise money for therapies. I know your time is clearly limited with your 3 munchkins, so please let me know if you would be interested and I can work on something. I would love to help and anything for Kyara!!!! I love you guys and am praying for you! I pray that God's plan for you brings your Kyara back and that you all get some healing! Call my cell if you have time (770) 262-8628.
Love, Stephanie Welling, RN
Genie,
Thank you for being so raw. God is at work in your sweet family, and He has a purpose, but I know it's so hard to understand when we are in the valleys. Kyara is just beautiful, and so is her mother. I am praying for you, for Kyara, and for your family. It is my prayer that smiles will come soon! Thank you again for sharing your prayers, celebrations, and frustrations.
Adrienne Maples
I still think about you everyday. I know you pray and want those days again. I pray you see those smiles again. She has the love of a mother, we know that is the strongest thing you can have.
God bless,
Lori Gray
Fulton,MS
Genie, I don't know what to say other than I love you and I admire you!!!!! Lots of prayers said daily
You brought me to tears...I can't phathom what you are going through but please know that there are people you don't even know praying daily for all of you. Be strong and keep believing!
Hugs from Illinois
Hi Genie,
Thanks for your update and photos. We often wonder how Kyara's progress is. Hang in there. Kyara and the rest of the family are always in our thoughts and prayers.
Love,
Ann, Rho, Randal
Genie,
I weep with you. My heart breaks every time I think of you guys and all you have been through. Please know that your story continues to touch people in ways that you cannot imagine.
The Kyara that we all adore is still in there and I cannot wait until the day she can tell you how much she loves you and how much she appreciates the endless sacrafices you and Gunars have made for her. Skylar and Kassey are wonderful and will grow up to do amazing things having had this experience in their lives.
We will continue to pray for you as you make the decisions surrounding Kyara's education and therapies.
Amy Brandon
Possum Snout in Tallapoosa, Georgia does free hippatherapy on Sunday afternoons. You might want to give them a call. I was able to see what all they do at during a nursing clinical. Praying for your family.
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