Thursday, 7 February 2013

Nothing has changed

Last week I opended the mailbox and found a letter of our geneticist. We went there last fall to have yet another, more specific series of genetic testing done, for the third time now. I was a bit nervous as I opened the envelope and before I took the time to read it properly I skimmed over the text quickly in order to find any results. But there were no results. Sunny is still undiagnosed. And, moreover, we reached the end of what can be tested by now. The letter said that more precise testing would maybe be available next year and that we should contact them again if we would like to have it done then.

As I mentioned before, I am cool with Sunny being undiagnosed. Truth be told, I would even have been very surprised had the letter contained any result and finally provided us with a reason for Sunny's delays. And although I really did not expect any result at all (after all the testing that has been done with regard to genetics and anything else that can be testet I guess I just got used to getting letters with no result in the end) there was still a strange feeling I had when I saw that the letter did not contain anything. Again. I cannot even put my finger on the exact feeling I had. Was it disappointment? Was it emptiness? Was it despair? Was it sadness? I don't know.

I do know, however, that nothing has changed and that sometimes there are worse things than that. And I do know that a diagnosis would not have changed much too, apart from having a name for it all. And maybe an outlook on a future I would not want to know about.

The feeling I had vanished quickly and I am fine. We have not talked about it thoroughly yet but from my point of view I do not want to pursue any more diagnostics any more. It is what it is and we will embrace the hard times and celebrate the good times. Like we always do.







PS: This week is crazily busy as we are going to visit my parents tomorrow and will stay there for almost a week. So there is a lot to do and organise before we leave. I am not sure if I will find the time to post while I am away as we are heading into the carnival season and hopefully will enjoy ourselves!

13 comments:

  1. Oh I want your patience! I want to be able to say no more diagnostics and let Boo be Boo. But everytime there might be an answer I cannot help myself.

    Enjoy your visit with your family. I bet they will be so happy to see Sunny and the progress he has made.

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    1. I understand your point and maybe if there were a hint what it could be we would do certainly further diagnostics. But no one has the slightest clue what they should even be looking for, all our doctors are completely in the dark and I am getting tired of searching for the needle in the haystack. One that I believe we will never find. So this is why I am at peace with the situation. We did what we could, we tested everything possible and I honestly do not believe they will ever find the reason. Some years ago I read that about 40 % of all children with developmental delays remain undiagnosed.

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    2. Oh, and thanks, I hope we will have a great time! xo

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  2. First, go enjoy the carnival season and your visit with your parents. Relax, have fun and just be.
    Second, I think your attitude is perfect. Although I think all of us want answers, and in some cases a diagnosis might help with services and answers but you're right. I never considered about maybe learning about a future that we don't want to know about. Because every child is his own person and frankly, he will make progress. He is making progress already and whatever would come in your mailbox on a piece of paper won't change how he's doing and you being such a great and loving mom to him. Hugs and love and have a great trip!

    Hey one of these days, you have to email me a photo of you and Sunny. I have a picture of you two in my head and wonder often if I am close. ;)
    xo

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    1. Kristi,
      Thank you so much for your comment. You know, about 3 years ago doctors told us they had a suspicion of a disease and that would have be an absolutely horrifying disease with lots of illness involved and lots of suffering and a very low life expectancy. It took about two months until their suspicion turned out to be wrong and these were the two worst moments of my life. I could think of nothing else but "will he get old enough to experience this or that" and my whole thinking was consumed by the disease lurking around the corner. I could not enjoy my child anymore. This is when I realised I do not want to know all that is lying ahead of us.

      And I will mail you a picture when we get back. Promised. :-) But before you have to tell me what we look like in your heads! This is always the fun part because most of the time the pictures in our heads do not match reality!

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  3. Wow, scary about the suspected disease. That's horrifying and awful and I can't think of anything worse to go through than the crazy not-knowing stage. I mean, we are both still in the crazy not-knowing stage but NOT when it comes to it being that our babies might not be in our arms soon stage, if that makes sense.
    I'm glad that the time of that worry for you has passed...
    and yes, I will tell you the picture in my head, but think I should email it because it might be fun to have a contest?

    Email me when you're back from holiday?

    XO

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    1. I totally get what you mean. And this experience really changed my perspective of what I want and what I don't want to know about the future.

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  4. I hope you can enjoy a break and an escape for a little at your parents--sounds like it would be so great for you to have rest. You are handling everything so well, but I'm sure it feels so weighty...hope your trip was/is wonderful :)

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    1. Thank you so much, Meredith! Yes, we had a wonderful time!

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  5. have a nice time at your parents! I think you have a great perspective - sometimes its easier to have a diagnosis or a "name" or an explanation for something, but in the end you are right - it doesn't change ANYthing really :) Great message!!

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    1. Thanks Alicia! xo
      I hope to catch up on all my favourite blogs in the next days. It means a lot of work! ;-)

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  6. Not having a specific reason for Patty's delay sometimes makes me crazy! But, I know a diagnosis won't come hand in hand with a magic pill so I try not to let it worry me.

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    1. Good attitude! Same here more or less.

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