Saturday, November 7, 2009

What ifs...

Maximus comes running out of the bedroom...just waking up from some good long sleeps…he is so full of life and himself! he is already asking if daddy will be home and if he has got his deer! he has a smile that melts my heart and spunk that makes me giggle…when Maddox sees him she has a grin from ear to ear…he always greets her with a BIG smile and an I love you…Maddox is always looking to make a connection with her 2 favorite people Max and Daddy…she stares at them until there is eye contact and then a full body smile happens…it is the best thing I have ever seen…I think that makes things harder…that they are just so adorable… I still am having a hard time believing…that I have no control…that I cannot make my family “normal”…there are days I would not change anything…the other days I am still just pissed…I suppose this is because I have been thinking a lot about the “what ifs”…it is time to decide who will take care of my children if the “what if” happens…I suppose we can minimize risk and never travel with one another…so we both will not die at the same time! Maddox throws a whole other dimension into the question…who will take care of my children if something happens to me and Chad…with Max it was with people we trusted and loved…but now with Maddox…the people we entrust have to be willing to except what comes with our Maddox…they also have to except the challenges…that they may have to put there life on hold for her…that Maddox may have to live with them forever…that they may be taking care of her for there entire life…I will not put her in a home…I want her to have a “normal” life…I suppose if she chooses to live in a residential home….that is what we will do…but I will never make her…so it poses the question…what do we do…who do we ask…to take on the life of the person we created…it is cute now…she is a baby…but I need to know my baby will be taken care of when she is 20, 30, 40, 50, 60, 70, 80 years old….she will still be my baby…but the world will view her very different…I do not want Max to feel he has to take care of Maddie…but I want him to if he chooses…this is the ugly part of life…making decisions…on “what ifs”…hoping you are making good choices for everyone in play…


  1. I think like most of us feeling and thinking all those same things you are about Maddox's future, we have to first find our own trust in our children's abilities. And we have to trust in others.

    Truly, I understand what you're talking about (and I have written about it too) and the "what if's" never completely go away -- at least for me. Also, Gabriel is an only child and that really makes me feel even more insecure about who will be there for him in his life, if not me and my husband.

    Sometimes I think my issues of truly not knowing who will take care and support Gabriel are really TRUST issues. Can I trust people to be supportive for him?

    Anyway, I think reaching out to other parents who have older children with Ds might be a step for both of us when dealing with the "what if's". Surely, we are not alone in this. And I think that planning (especially financially) for our children's future is really important, too. That in itself may give us back a sense of control?

  2. We were having that same discussion - the one of who will take care of them if...

    Good luck! My heart goes out to you - it is such a hard choice - we still have no idea and I feel like I should have done it 3 years ago!