sherriknits

Tomorrow is the last day of 31 for 21.  It has been an interesting month for me.  When I first started, I wasn’t going to be legalistic about making sure I posted every day.  To be honest, it never felt difficult to do a post and once or twice I almost forgot but one of my kids reminded me and I managed to get one done.

It was never really hard to come up with something to talk about because there are so many things in a day that give something to share.  My hope through this month always was to just show that life in our household is more normal than not.  On the other hand, I would be lying to say I realize it is different, too.  I’ve always tried to be as honest as I can about our lives and share the ups and downs but at the same time, I do try to look at the positive side…or get myself to that place.

I hope you’ve enjoyed getting to know the whole family…our kids have all been such a blessing.  I think the 3 older kids have shown that they realize they are different people because of the impact of Tyler in their lives.  Rebecca is still marveling that she doesn’t remember ever really being told about Tyler having Down Syndrome, it has always been a fact of her life.  Ben remembers but maybe didn’t really understand what it was all about.  Rhianna was old enough to know.

It was normal to the kids to have teachers and therapists coming to our house every week with buckets of toys.  Tyler’s first therapist, who we were blessed to have for 11 1/2 years, laughs to this day over how I made Ben and Rebecca sit on the couch with their hands folded while she worked with Tyler.  I was so scared, I guess, that they would get in the way…but she always brought fun things for them to do, too.  She had artwork from them for years on her refrigerator because she was like family to them.  I’m sure they thought every family had people come play like that.

I can’t even remember if I ever shared what it was like for us to find out we’d had a child with a disability.  Maybe it doesn’t matter so much right now.  I do know that our first conversations were about knowing God does not make mistakes.  We knew it, we truly believed it.  But I will be honest, Kenny and I walked through a lot of pain in the early days.  At odd times, we both would just break down crying.  At the same time, we experienced unspeakable joy over different things happening.  We learned what it was to smile on the outside and cry on the inside.  We know and understand the tears behind closed doors.  I remember many times talking about at the same moment experiencing huge sorrow and grief at the same time we felt incredible happiness.  It has been a good thing.

I was always the one who could not stand having attention called to myself and now I get to walk around with this little attention-getter.  That’s been good for me.  (although I still hate the attention).  We have been fortunate in never really having a bad experience, people usually are very kind and see the fun side of things.  We’ve had very few rude remarks from people and usually they are just out of ignorance.  It makes me cringe when I wonder how many thoughtless things I’ve said to other people in my own ignorance.

We’ve all learned to give others grace when they step on our toes that way.  We know people usually mean well.

We can’t really remember what life was like before we lived this life.  We have learned there are so many ways to walk it out and we’ve learned to be comfortable in the way we’ve chosen.  Along the way we have met very few who are like-minded but that’s ok.  We all need to give each other room to do what works for their own family.

We know that we are grateful for the built-in support system we have with our family.  Tyler will never have to worry about being taken care of because he is so loved by his siblings and extended family.  Rhianna has often said that she believes he may live with her at different times just to give us some space, whether that ever happens is not important to me, what is important that as an adult she says it and means it. 

Kenny and I are learning now to adjust to being “the three of us” as our kids have moved along in their lives.  Ben still lives with us but he is rarely here and will be married in less than a year.  This has been a difficult adjustment for us but we know God will always give us the grace to do it if we trust Him to. 

The first time we went away for a week together (the 3 of us), we were so exhausted from the 24/7 care and not being able to go for a little drive or walk together just the two of us.  But we’re getting used to it and it does no good to dwell on the difficulty.  I am convinced God knows the desire of our hearts and if we need time away, we have great kids who will care for Tyler so we can do it. 

What’s funny along that line is the first time we went away without Tyler (our 25th anniversary!) we spent 2 of the 3 days constantly worrying about who had hold of him or looking for him to make sure he wasn’t too close to the water or the edge of the cliff.  It was our first realization about how constant he is.  From that point, we started trying to take a weekend here and there because we realized it wasn’t healthy to never take a break from the constant stress.

We hope we didn’t and won’t impose too terribly much on our other kids.  We know we’ve made mistakes in that way…especially with Rebecca, who took the brunt of that…but we also hope they always know that we are so, so grateful and so, so proud of them.

I’m thankful for this challenge to do my part in bringing awareness to Down Syndrome in this month devoted to that.  Rebecca thought it would be fun to start a family blog that we all have access to so we can share things as they happen.  I think we might do that.  I want them to be able to share as well as their spouses.  We’ll let you know if we ever do get that going.

I also wanted to say that when we figure out how to get the “tv program” online that Kenny talked about on his post  we’ll share that.  It’s just been too busy to work on that although he edited it down and it’s ready to go.

I’ll end this post by saying thank you to my family.  Kenny, I couldn’t imagine trying to do this without you, I love you and am so grateful to walk through life by your side.  Rhianna, Benjamin, Rebecca…thank you for loving your brother with the intensity that you do and for being there for him and for us.  We’ve always been able to count on you and it’s been a joy to watch God shape your lives through your brother.  Kyle, Brittany, and Chase…you guys are incredible.  You have come into our family and have embraced Tyler as your own brother and we love you for it.  We couldn’t ask for more.  And to our extended family and all our friends who walk along side us, thank you…we couldn’t do it without you either. 

Whew, I think I’ll go cry some happy tears now.

Tags: my life