DeafBlind but knows close family members!

posted in: Kodiak My Little Grizzly | 2

My dear Colt went to Papa’s house to hunt and build things on Monday. It’s so very quiet around here… I miss you Colt!!! However, My mom arrived with my two sweet nieces Emily and Abby yesterday. Kodi was here with Mark his PCA. When they arrived Kodi felt my mom and got all giddy and excited. He really loves her. I know he knows Emily and Abby as well… I was at work but I guess he knows my mom so well and latches on to her so quickly. So today we all slowly got up. Kodi had a rough beginning. He was quiet and then I gave him a bath after breakfast. I don’t know what it is but I always worry about bath time. He gets so wild and loves it so much and yet he slams his head around in there. It’s how he hurt my left hand in September. I finally found a bath pillow… really doesn’t help much because he just takes his head off and slams it anyway. Anyway, he had so much fun in his long bath with water everywhere. But after his bath he was not happy. He was pounding on his left eye… He would not stop and he kept crying. I finally found his eye drops. I got his drops in and put his cool pack green eye mask on and it seemed to help a little. But the tears just kept coming. He was clingy to his Nana!! I was helping Symone, Emily and Abby get ready for their girlies to arrive to have their spa party… He did not calm down for quite some time… Then after some came and lunch was out of the way and they went to the basement to watch a movie and paint polish on their fingers and toes then I sat down and begin to give him more attention.

We played a game. His white chocolate animal cookies with sprinkles on them and peanut butter M&M’s. I put both in a bowl and then signed “more candy” and gave him an M&M. He giggled and then signed “more” I then signed “more cookie” and he ate the cookie. Then he kept signing “more” I made him sign either candy or cookie. One time he signed “more candy” so I gave him an M&M. Then another time it was “more cookie” so I gave him a cookie. YEAH!!! Now he can make choices again… He knows/remembers. When he does it right he claps for himself. He gets so excited that he has communicated something. I’m so proud of this little trooper. It’s like he is finally coming out of his very dark world. We have met so many people after this darkness began and they never had known Kodi any different. So for them I’m happy to say “I don’t think we will get him back quite like he was because he is so different and now without vision. But he’s goofy, sweet, mischievous, giddy, happy little guy with an infectious laugh and that I’m happy to have back.”

I hope everyone can get to see this side of my little grizzly bear. You see he’s a fighter, he’s strong, yet he can be so sweet and loving and kind. I really miss his beautiful black/brown eyes. This brings me back to when he was in NICU.

I could not hold this little guy enough. I wanted him to know it was me.
I could not hold this little guy enough. I wanted him to know it was me.

He was put through so many tests as a newborn at Children’s in Minneapolis. He had to have a little feeding tube down to his tummy through his nose and the nurses were giving him a few cc’s by syringe into his tube to his little tummy. It made me so sad because I would see how very little he was actually getting… Anyway, the eye surgeon was set up to come and visit Kodi. Mike took off work and we were told all morning he was coming by. We waited all morning long. Then when the nurses told us to go to the lunchroom quick to get food because we did not get lunch yet and it was about to close, we did. They had my cell to call. But of course my cell does not work in the lower level of the hospital so even though all we did was get food to bring back and take turns outside NICU to eat up there it was when we missed the Dr. When we got close to the NICU my phone vibrated that I had a voicemail. There were two. The first was the Dr. He said to get back up their because he was there now and he “had a day and could not wait around all day” for us. I was irritated by the rude way he was talking. The second one was “your baby has coloboma’s and can’t see. There is nothing I can do and I don’t want to waste my time here with this!” I started crying.

I know Mike had a hard time with all of this. He would not show it though.
I know Mike had a hard time with all of this. He would not show it though.
Tired and a very long day. I could not believe the Dr was so rude.
Tired and a very long day. I could not believe the Dr was so rude.

I left my food outside and went in. The nurse said “You just missed him and he dilated his eyes. He said he would call you.” I held my little boys fingers. I was so sad. Why was that Dr so mean. We were only gone 15 minutes. We left little Kodi for a while and went home to meet up with other family. My brother and Sister-in-law were there and so they took me back to the hospital and we saw other family as well. Kodi’s eyes were still dilated. He grabbed my finger and looked right at me and turned to me. I could not let go. After everyone was ready to leave I was still unable to remove my finger from his grip. My eyes were leaking with the fact the Dr was so rude to us, then I realized otherwise. I knew right then and there that he could see something. If nothing else up close and the lights he could tell I was his mother. That was when my heart really bonded with his. I realized he needed me to fight for him and he would also fight. I then in his right ear said “I love you baby! Momma loves you Kodiak!” I had tears streaming down my face. I could not hold back my love for this little man. As mom’s we form a bond from the moment we learn about that little person

He could actually see more or something after his eyes were dilated. He looked right at me and would not let go.
He could actually see more or something after his eyes were dilated. He looked right at me and would not let go.

then when we first get to hold them after they are born we become like Momma grizzly But there is another special bond that happens with each child along the way as they grow up… Little moments that pulls on our heart strings a little more. Well when you have a child that needs extra help, has extra special needs and is taken away at those little moments it’s hard to find your connection. Because you are told so many things that are so overwhelming and put you in a state of shock… But then some little thing reels you right in for life…. This moment was that moment for me… I was coming down every day all day to sit and hold and rock him… His nurse told me she was so glad he had me.She said it’s so sad when the parents don’t come for days and we take care of them like they are our babies… then we become sad when we see they are going home with uncaring parents… But she was happy Kodi had a good family that loved him. And then she told me about a lot of CHARGER’s that she has taken care of over the years. She told me Kodiak was a cute charger. Sometimes I would just sit in the rocker and hold him and cry. It was a very emotional, rough 12 days. I did not really care for very many doctors there. They all seemed cold. Uncaring and blunt and really harsh. I was so happy to bring my little man home! I’ll share that more next time.

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Got more girlies here now so 9 teenagers in my small 3 story townhome to make my lady Symone Indigo happy!!!

Kodi had been crying and hitting his eyes again. The weather is changing to stormy again. He actually signed “Eye hurt” to me…. He head-butted my left ear and I signed “no you hurt mama’s ear.” Then he slammed his knee to his head and I signed “hurt knee hurt head” I hugged him and he sat back and cried and signed “eye hurt” I must go… he’s crying!

Grizzly’s momma is signing off now! Thanks for checking in! Please share this with people you know… everyone needs to know about DeafBlindness and how there is a person in there… 🙂

2 Responses

  1. Heather I look forward to more posts. Love you guys.

  2. This is Emily, Kodi’s cuz. Have a nice day y’all.