Feeling guility

[billy02]

I have a 11 month normal child and a vent and g-tube child who is 4 years old. He hardly has any mobility, then there is my littleone. He's running all around the house getting into everything. I don't know how to entertain him,play with him etc. etc. When I try I feel guilty. I want to enjoy him but are having a rough time with it. Any tips will be wonderful, how do I not feel guilty? Hopeless Sharon W.

[Ann]

My son, Jack, is 8 years old and has been vent dependent since he was 4 months old. Â*He has zero mobility due to his disease. Â*Jack has a younger brother, Eric, who is 4 ½ and he is a typical little boy who is a wild-man running and jumping and being as busy as can be. Â*Jack also has two older sisters. I completely understand how you feel – IÂ’ve been there too and still have my days. Â*My question to you Â… is Billy happy? Â*If he is, then that is all that matters. Â*Billy doesnÂ’t know any different, he isnÂ’t thinking that he wishes he could do everything his brother is doing. Â*As long as he knows he is loved, youÂ’ve done your job as his mommy. Â*Funny thing is, my youngest complains that he wants to be like Jack because, from his perspective, Jack gets “everything”. Â*It really is a matter of perspective. Â*IÂ’d like to share with you something I recently wrote regarding JackÂ’s and “happiness”:

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JackÂ’s perspective:

It's been mentioned by many of you – that in spite of everything, Jack appears happy. Yes, JACK IS HAPPY! How can that be? Some might believe itÂ’s because Jack isnÂ’t all “there” (these some bodies are generally found in the medical profession). While Jack may be labeled MR by the professionals, there is no question that Jack is “here”. I know this to be true. I know it because I see it in his eyes, I see it in his smile and I feel it in his presence. Â*Jack may not be a “genius”, but Jack is wise beyond his years. To acquire wisdom, one must be an observer and Jack is the supreme observer. If Jack is so wise and truly “gets it”, then I ask again, how can he possibly be so happy?

I suppose one way to analyze this question is by asking what is it about Jack’s situation that makes me so unhappy? Unpredictability, confinement, lack of control and uncertainty . . . to name a few. Yet, from Jack’s perspective, life is very predictable, he has no place he must go, he has no need to control and he doesn’t need to know what tomorrow may bring. Jack lives for the moment and every moment of every day Jack is loved, he is pampered, he is adored, he is entertained and he is shielded from pain to the best of our abilities. Any parent would do for their child what we do for Jack – there is nothing unique about us as parents. The uniqueness lies in Jack. I can’t explain it, it’s just there.

As a parent, itÂ’s my responsibility to carry the worry and burden of this journey, not JackÂ’s. Therefore, while IÂ’ll no doubt continue to fret about the unpredictability, confinement, lack of control and uncertainty and yes, IÂ’ll occasionally be unhappy . . . Jack will continue to live in the moment and, in his own unique and wise way, he will continue to BE HAPPY.

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There is nothing wrong with you. Â*It's difficult to not define happiness and success by society's standards. But, at the end of the day, all that really matters is being loved. Let go of your guilt. Â*Billy has a completely different perspective than his little brother. His happiness will be on a much different, simpler level. It's okay and it's okay to give your youngest child the time and attention he deserves. Â*That will make Billy happy, I'm sure. Â*

Many Â*

[kimh]

Oh Ann THANK YOU, that was so well said, it is all so true, I am ALWAYS amazed at how well you put feelings into words. You need to write a book about your journey with Jack. I for one would like the first autographed copy.
HUGS
kim