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You know, right before we went to this rally, I had Kenny at his Comprehensive care appt. where we are concerned that Kenny, even though he has this feeding tube, is not gaining weight. he is just maintaining. At that appointment. I was just looking at Kenny and the way he was acting....his typical self. opening and shutting the drawers and door to the room, yelling like he always does...not in a mean way, but the only way he knows how to communicate. He was smiling and just being cute. I asked the doctor if he sees this a lot. The way he acts. What I really wanted to ask was...is my child...um...retarded(not being politically correct here, sorry)? I know that sounds cruel...but it has run through Tony's and my head. I mean...really. I am being honest. We haven't gotten a true diagnosis...almost like the elephant in the middle of the living room thing...but is it that he is mentally disabled or is it this being a "micro preemie" thing? I see other moms of micros on their blogs writing and to me, their kids are almost normal. I mean...there are some with CP, but that is not what I was getting at. I know Kenny has some form of CP...his walk is really off and his one arm curls under when he walks...he's got tight muscles and weak muscles as well. I am talking about developmentally. He is waaay behind in this area, I see it so much because of Gina...and other kids that are Kenny's age. I want my son to be normal. I dont want him to have to deal with this the rest of his life. He's had to deal with so much in these last 3.5 years...its not fair to him. Anyhow...the doctor never gave me an answer. Do I really want that answer? ah...who knows. I know Kenny and as long as it is not bothering him...I will try my best to not let it bother me (in front of him any how), but it will always break my heart.
He is going to have to be hospitalized again if he continues to not gain weight though. The doctor wants to run several tests to rule things out as to why he's not gaining. Yes...another thing to worry about. Its almost too much after this week we've had...
So that is about all.
We had such fun at the rally...it took my mind off of his doctor appt.
So please...all of you that feel that life is getting the best of you (kinda like me)...help someone. Do something nice for a neighbor or something...or maybe even a stranger. It makes you feel so much better inside. What a beautiful thing EMHE and the builders...oh...and all the sponsors and people that donate...do for a family...just beautiful...Everyone should be so helpful and generous to strangers all the time, because honestly, no one really knows what has gone on in someone's life to make them what they are. And no one should judge!
3 comments:
First off.. how do you ALWAYS looks so amazing and beautiful in every picture! Your smile is contagious and whenever I see it, it makes me smile as well.
I'm glad you had fun at the rally tonight.. I have always been a person that loves to do stuff for others and I don't need anything back in return. Making someone happy or helping them in someway.. well that is what I like. In a couple of days we will know who it is.. I can't say for sure if it will be you guys or not.. there are so many people in your area, that you never know.. what I do know is if they actually go by who needs it and who DESERVES it.. it will Be THE TOMECKO FAMILY they will be screaming out to get this great gift. I don't know how you guys do it, I really don't... But I really look up to you as a person.. You are so genuine about how your feeling, the stress your under, the LOVE for your kids and family.. and how you know that you can't change things, you just roll with it.. I will tell you if I had a MILLION DOLLARS, I would be on my way to your house and grant you that wish...Your such a wonderful person.. You give ME strength girl! Now go get some sleep!!
Thanks for the post on many levels. First because I was so sad to have missed the rally due to working this evening. I really wanted to be there and figure out how we could lend a hand. Second, for sharing your reality. What really runs through your thoughts, too often people are afraid to be transparent, but transparency is how we get to really know and understand those that we journey through life with. Lastly, your encouragement to not stay consumed or focused on our own problems and life as we know it but to remember to reach out and have compassion on those around us. Thanks Michelle! Praying that God will surprise you with favorable answers to the issues surrounding Kenny. Hugs from our house to yours! ~Katherine
Romans 8:32
He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?
2 Corinthians 8:2-5
Out of the most severe trial, their overflowing joy and their extreme poverty welled up in rich generosity. 3For I testify that they gave as much as they were able, and even beyond their ability. Entirely on their own, they urgently pleaded with us for the privilege of sharing in this service to the saints. And they did not do as we expected, but they gave themselves first to the Lord and then to us in keeping with God's will.
1 John 3: 17-18
If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth.
Blessings to you dear sister...love you...d
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