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Saturday, October 9, 2010

Too much to Bear? I don't think so!

One of my fellow blogging moms asked the following as a comment to my last blog post, Life is Worth Fighting For:
"I ask this out of complete respect and mean absolutely no disrespect. How do you deal with the future knowing that he may never be able to leave your home or care? What are your plans for him when you and your husband have passed away and he is an adult male w/Ds unable to care for himself? That would be my biggest concern if I were a parent of a child w/Ds. To have to care for them for the rest of their lives- that seems like almost too much to bear." 


So many answers are racing into my mind that it's surprising me.  Therefore, I feel the need to answer in blog form as opposed to a reply e-mail message or comment.  It's a good, natural question.  I faced it the day I found out Kheaven had Ds.  I dealt with almost any negative feeling I could have felt at that time, then I moved on!


I'm going to break the comment apart and try to answer it piece by piece first.




"How do you deal with the future knowing that he may never be able to leave your home or care?"
I'm excited for the future!  I honestly would love to adopt a child with Down syndrome in the future.  I think if Kheaven, or any adopted child I would have, cannot live independently, it would be a joy to live with and care for them rest of my life.  I'm the mom!  Caring is what I do!!


I suppose what scares me is independence.  What will I do if Kheaven is fully capable of caring for himself and wants to move away?!  What will I do if I can't be there for him in a spit second if he needs me?!  How am I going to deal with this for any of my children?!?!  ;)


My dream...  haha...  My dream is that my kids will love me and the environment they grow up in SO much that they will want to live in an attachment to my home or next door to me.  That's a lot for me to ask considering I have not lived in the same state as my family for a year since I graduated.  That's my dream though.  If they don't want to be that close I'm hoping for visits on holidays and the weekends.




"What are your plans for him when you and your husband have passed away and he is an adult male w/Ds unable to care for himself?"
First of all, many adults with Down syndrome are capable of caring for themselves.  They have learning delays, but they still can learn the things anyone else can learn, and they can do the things anyone else can do. They just have to work harder for it.


Who will take care of you when you're older?  Do you know for certain you'll die before you're incapable of caring for yourself.  I don't know that for myself.  My dream...  (Here I go with dreaming again.)  My dream is that if I live a FULL life, and if my children lead FULL lives and are around that one of them will want to care for Kheaven if I'm gone or incapable of it myself.  I do not expect this of them, but it's a dream.  If there is no one there for Kheaven I would think he'll be put in a nursing home/care facility.  I don't imagine he'll have a hard time making friends, especially if it's a facility that specializes in care for people with Ds or other special needs.  He may just have the time of his life there!  :)




"  ...my biggest concern if I were a parent of a child w/Ds. To have to care for them for the rest of their lives- that seems like almost too much to bear." 
It's a morbid thought, but could one of my children, or your children, or anyone's children fall down the stairs and need to be cared for the rest of their life?  Yes...  Could we have a 24 year old get into a tragic car accident and need to be cared for the rest of their life?  Yes.  Would you love your child any less for these reasons?  I wouldn't.  Yes it's more to bear, but it's not too much!




I had a miscarriage before I had Kheaven.  Losing that baby felt like "too much to bear."  Any parent who has lost a child must have had, "too much to bear."


Caring for my child, my son, is a blessing not a burden.♥


We really are MORE ALIKE than different!  It's one of those things that I know from experience that it would be hard to know unless you're in the situation... but that's why parents, why I, do this 31 for 21 blog.  We want others to see that our kids are kids, we are parents.  Life is a little different but we are not worlds apart.

4 comments:

Foursons said...

Great answers, thank you for being so candid. And you gave me a completely different perspective on special needs kids that I did not have before.

Our Typical Life said...

Great post! You said it much better than I could have!

I have a 3yr old daughter who had Down syndrome.

A Lady Called Amy said...

Thank you. :)

thetaooftulips said...

You really did a great job answering the questions. Your phrasing of the responses was so kind. You sound similar to me in your hopes and dreams. Kheaven is sooooo so cute.