Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Saturday, May 28, 2011

I Can Do a Lot of Stuff...

Since Joel has died, I quite suddenly have been able to do so many things I couldn't before.  Or that I couldn't do without planning respite and preparing, and there were certainly limits on either how many different things I could do, or on how often I could do them.

I stayed home a lot.  Most of the time, other than some sadness at stay at home vacation or watching other people go camping, most of the time, I didn't mind too much.  I loved staying home with Joel.  Of course, some of my best memories are TAKING JOEL somewhere.  Like last summer, when he felt happy enough to enjoy picnics.  Or our "Staycation."  Or even just the times he was up for and enjoyed a stroller ride or just hanging out in the back yard.

But I didn't mind all the evenings of just being at home with my boys.  Or the afternoons, either.  I know, I'm a bit of a "homebody" for someone who claims to be an extrovert.  But I enjoyed the winter evenings of just cuddling my boy and watch TV or reading a book.  In fact, though respite was really good for us, and for me, because I NEEDED to get out and so did my family, I can also tell you that in a strange way there were many times that I went out on respite day knowing that I was giving something precious up to my respite worker.  Of course, I'm not suggesting she didn't deserve her pay.  It's just that sometimes when I left my smiling and cooing little boy, I knew that I was surrendering to her some precious hours that I'd never get back.  Hours that were on a very short supply.  I did it because I knew it was good for me and the family.  But I also sometimes did it with a pang.  I was happy to get back to Joel at the end of the four hours.

I was fortunate to be so happy in the midst of it all.  There were times, like last spring, where I felt a pang of sadness for missing one of the most lovely spring seasons in a while, due to being in the hospital for much of it.  Yes.  There were times like that.  Sometimes.

This year I can enjoy the spring.  But yet, there is much fiercer pang.  Last year Joel was in hospital during my birthday.  This year around my birthday I couldn't help but feeling it.  Yes.  I wished that I could be in the hospital on those beautiful warm days, I wished I could be in the hospital again, just holding and cuddling Joel.  Of course.  I wished I could just walk into the hospital, abandoning the sun and air and leaves, to find my Joel and hold him.

This was the life I had with Joel.  And I miss it, because I miss him.  It's not that I have no interest in lovely weather and parks, really.  I do.  It's just that I never had much chance to have BOTH that AND Joel.  And if I had to choose, Joel would win every time.

This is NOT to say that I feel guilty about this new freedom, or about walks in the park, or going shopping or for coffee.  I don't feel any guilt about enjoying going out to a movie "when I want," or being able to so easily run to the grocery store on a whim for what to have for supper.  I don't feel guilty about being HAPPY while I do these things.  I truly don't.

Why should I?  I know that Joel has not ceased to exist.  His life is not over.  I know that Joel is enjoying himself immensely and would I want him to sit down in heaven and cry for "poor Mommy" because she misses him so?  NO!!  I'm happy he is happy, joyful and at peace.  He's really got it a lot better than I do.  And I'm sure my sadness is no comfort, consolation, or joy to him.  So I don't feel guilty at all about enjoying these little pleasures that some people take for granted, but that felt so strange to me.  Nice.  Enjoyable.  And strange.  But no guilt.

So I do enjoy them, but at the same time I feel sad.  Sad to be able to enjoy them.  I am happy, in the park, or visiting a friend.  Whatever it may be.  But at the same time a small part of my heart is broken.  Because how ever nice it is, it's not Joel. 

I'm trying not to get swallowed up in longing for him.  I don't want the longing to swallow up the goodness of what I can have now.  It is what I can have.  It is not what I chose.  But it is what I have been given.  So I'm trying to rejoice in it as much as the pain in my heart will let me.  Sometimes just a little.  Sometimes a lot more.  A big jumble of enjoyment and contentment and sadness and pain and longing and peace and happiness and loss.  And that is talking about the easier days. 

This is the day that the Lord has given.   There is much opportunity for good, for rejoicing and being glad.  In amongst the tears and longing.

3 comments:

  1. I was watching a documentary and, for the life of me, did not make a note of what it was called or even who it was about, other than it was a lady who was a very calming, peaceful soul. I did not have time to watch the whole film but I did catch a snippet that spoke to me and possibly to your pain as well. She said something very basic like the entire universe is comprised of opposites. In order for there to be good, there must be bad. For there to be joy, there must be pain. It really is very basic. And she was amazed that how our society is programmed to only expect the good and the excess free of any of the alternatives.

    It got me thinking about how the perfect Summer day for me is a nice cool, sunny morning followed by a warm, almost hot afternoon and then a Thunderstorm or rain shower in the evening. I want sun and rain in my life. It opened the door for me to accept that I want sun (joy to the greatest heights) along with my rain (sorrow and loss). I had never made that connection before. It is a beautiful thought. We do not want to drown in our sorrow but at the same time it is a desired temperance at the end of a long, sunny day. For me it made me approach hardship in a very different way. I may not know the answers to why the suffering had to happen, but I do have faith that they are part of a purpose in my life.

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  2. just wondering how your beautiful caden is doing - how blessed you are to have him to keep you going and doing fun things even though your heart is broken...

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  3. Yes...it is a strange feeling to experience this new found freedom without being tied to a feeding schedule or medicine regiment. It is strange indeed. I, like you, do enjoy the freedom and all the new many things I can do, but there is always a hint of sadness in just about everything. It most certainly doesn't kill the moment, but it is always there.

    I really liked what your friend said above: "We do not want to drown in our sorrow but at the same time it is a desired temperance at the end of a long, sunny day." It really is a beautiful thought...and is exactly how I end some very "sunny" days.

    Tracy
    'Angel' Graham's Momma

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