Today started with my sister leaving. Really leaving.....moving 6 hours away and even though we don't see each other every day or even every week I always knew I could. Now I can't. I knew this would happen....I feel very sad and very alone. I don't know why, I really don't but it has been probably been 12 years or so since we have not lived close to each other. She got back from her conference last night and spent the night with us. She and her dog. I am not a big fan of the dog and last night I didn't even care. I was just happy she was here. This morning I tried so hard to just say good bye but I couldn't help but cry. When I think about it I really don't understand why I am so sad, I know I will see her but I guess she has always been my security blanket. She is like a second mother to me. When I didn't know what to do I called Sherri. Yes, I can still call her but just knowing that she can't just come over I or go over there makes it different. I will miss her girls too. I will miss them with Raelynn and Cooper. It all just makes me very sad. So this was the start to the day.
I got to work and after a few phone calls discovered that there is still a lot of time, work and money before we can actually say funds for Cooper's Cause are "tax deductible". This is a minor set back and we will continue to pursue this, there are just few more things we have to do. It will still happen and it wasn't "bad" news, just a day I didn't care to hear it. I will talk more of this later but again please note, until further notice, donations are not considered tax deductible quite yet.
Then there was Cooper. We are so frustrated with the whole eating process. This weekend I felt like we made some real progress. He actually allowed me to put food in his mouth and allowed me to put the bottle in his mouth. Now he didn't really do much with the food or the bottle but it was a start. Then today, he wouldn't do either for Lisa. I just want so badly for him to eat. It is hard for me to understand why he won't. I know he has had a tough time. I know he has only ate for himself about 1 1/2 months out of his whole life. I get it, but how do you teach someone to eat!!! In my line of work, you can not be discouraged by rejection, it is completely normal in any job that requires sales. I have learned to not take it personally. But when you baby rejects you feeding him time after time after time, it is very difficult to keep presenting it and not assume he will reject it. This weekend I was so excited on Saturday when we made some progress. I acted like a complete idiot with silly noises and dramatic facial expressions to make him think eating is fun, and it worked. But then today, nothing! I think I am just tired, really tired. The nights have been pretty rough since about Thursday and sometimes I just get too tired to remember the good things that are happening too. So we will move on to that.
I met our Primary Coach with Tiny K, Molly. She is fabulous. She is sweet and outgoing and we really like her. Today I met with her and set up our goals with Cooper. As you can imagine, eating was on top of my list. I think this program is going to be amazingly helpful for us. We will meet with them next Wednesday for our first session and I cannot wait. I hope they will be able to offer some guidance. I just want my sweet Cooper to be tube free! Tonight I had to pull the tube in order to put a new one in. Cooper sweats so much we are having a hard time keeping the tube taped to his face. I pulled it about 7:30pm and when we put it back in at 8:15pm I truly wanted to cry!
So as much as I am wining tonight, as I look at these pictures, I knew I am the luckiest Mom in the world and our current frustrations and my sadness is short lived and tomorrow is sure to be a better day!
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3 comments:
I am just writing to say, you are so great! And I want to somehow make you know how inspirational you have been in your handling of this long time of stress, stress, stress. I identify with the feelings you express even without the actual experiences. I know I would not have been so gracious and able to sustain such a positive attitude in the face of so many challenges. Love does make for great strength. And, I hope you know how much love you are sharing with all of us in your blog. So, indulge in a little sadness without guilt. You are only human, even if that is not always so apparent as you keep going and sharing so selflessly. Your family is really lucky and blessed to have you.
Linda Wiley (Isaac's mom)
Hi all i can tell you is to just hang in there. I would give absolutly anything for cooper to get rid of that tube, it will juat take some time but it will get there you just have to have faith. And about sherri, all i can say is that you just need to remember that you have alot of great friends that are willing to do more than you could imagin.and dont forget that where ever you think the family is you should keep in mind that we are closer than you think. We are in your hearts and just a phone call away, and any time you need some one we will always be there to confort you at any time. I thought i should share one of my favorit quotes with you(When you think you cant handle what life throws at you, just remember that god will never give you anything you cant handle) Love You Lots!!!!!!
Hang in there girl!! Remember it's these most challenging times that make us stronger! I know that doesn't lessen the impact of the many challenges you're facing right now, but please know that we're all here rooting for you guys and willing to help support you in any way we can! :)
I cannot get over how much Cooper has filled out!! He looks like a little boy! It's just so wonderful to see these pics of him growing and thriving--you're doing a great job, mom and dad! Don't forget to give yourself and each other pats from time-to-time! :)
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