Wednesday, March 16, 2011

Keepin' It Real

In writing this blog, it is always in my mind, who am I speaking to?  A new mom looking for blogs about Down syndrome?  A mom thinking about homeschooling their child with Down syndrome?  A mom needing encouragement? A mom looking for specific ideas that might be helpful in their homeschooling?  Friends and acquaintances that really want to understand?  With the exception of the last one, I have been each of those people, looking for websites and blogs for each of those different reasons.  The blogs I most enjoy have given me some of each of those things.  Encouragement, homeschooling ideas, a realization that there are others that feel much the same as I do...that there are those that face the same struggles and find some of the same joys of having a loved one with DS.   I feel most connected when the writer shares struggles as well as the blessings. When they seem real.  When I can identify with them.

In sharing our life on this blog, I am ever mindful of who is reading, and also the fact that they don't really know me.  It makes it hard to share some of the struggles.  I would hate to think that a mom looking for encouragement felt discouraged by looking further down the road and thinking about something they aren't ready to face yet.   As much as I'm concerned that someone might find reading the struggles discouraging, so might someone who is struggling find it difficult to read only the good stuff.  Might they wonder if everyone else with a kid with Down syndrome is making such a party of it that they are the only ones having a hard time? I  think that sometimes, as Christians, many of us think we aren't supposed to struggle in the way that we do.  That somehow, if we were stronger Christians, these things, these issues wouldn't seem so hard.  I've been pondering that lately.  Because there have certainly been times that I'm struggling (not always DS, sometimes it's those typical kids that are the problem :), or unemployment, finances, overcommitted with a lack of energy.  Now I'm whining, so I'll stop there :)

I do know this, "...that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28  Those who love him, called to his purpose, that's me! I take all things to mean all things; the good, the bad, and the ugly.  All things work for my good in the end.  They might not always feel good in the moment.  Sometimes they teach me endurance.  Sometimes they teach something I'll need later.  Even if I don't always know the why, I do know the who.  He's trustworthy.  He loves me.  He's promised to work all things for my good.  I'll trust that. 

As much as is possible I'm going to try to keep it real.  In doing so, know matter what struggles I share, no matter what difficulties we face as a result of Down syndrome I love and accept Jessie unconditionally.  She is a gift, as all children are, to me, to our family.  We wouldn't change her if we could.  Sometimes, it's still hard.

Thinking of all of you.  Wondering whose reading......


Tuesday, March 15, 2011

New Realizations

Our kid has Down syndrome.  We've known this for a long time now :)  And yet, it seems that really understanding what that means happens over time. For each of us in the family, over time, there are some new realizations.  Sometimes, when they are new, it hurts a bit.  This past week was one of those times for Jordan. 

Jordan took Jessie along when she went to babysit 3 small children, all 6 and under.  Brave, huh?  She wanted Jessie to get to play with some friends.  She's played with these same children before and talks about them and wanting to go play with them.  This day, Jessie just never seemed to want to play the same things as the other children.  She was obsessively consumed with thoughts of a particular electronic game they weren't supposed to get out till after lunch.  The other kids were all fine with that.  Jessie just couldn't let it go and couldn't be satisfied with the other things.  Jessie's attention span....well, it ain't too long.  So, constantly Jessie was begging for V Smile.  She wasn't only being stubborn, which is certainly part of the equation.  She has no concept of how long till their lunch time.  No matter how hard Jordan tried to get Jessie to play cooperatively with the other kids, it just never lasted very long.  They love Lincoln logs...Jessie just doesn't have a clue why they're supposed to be fun.  We have some and she is so totally disinterested, even if I play with her.  I don't remember the other things they were playing but Jordan tried so hard, doing everything she could to make it work.  Jessie has a one track mind, a short attention span, inability to do some things kids younger than her can do, is inflexible, and stubborn.  Jordan called me crying and asked me to talk to Jessie.  Sometimes a little reminder from mom is all that is needed.  When I talked to Jessie she realized Jordan was crying and she began to cry.  Jordan had told her if she didn't behave she was going home. She started putting her shoes on and was ready to go home.  Jessie loves nothing better than playing with other children so that let me know that her frustration level was high as well.  I think she really was trying hard to "be good" but she did not want to play the things the other children were and didn't know what to do with herself. Jordan had a good cry on the way home.  We talked for while when she got home and then she said, "I feel like I just found out my baby has Down syndrome."  This day, she understood that Jessie wasn't trying to be uncooperative or behave badly but the situation was beyond her. No matter how much we love Jessie, sometimes Down syndrome is hard. 

Jordan is so mothering to Jessie.  I've said several times that I know Jessie will be well loved and taken care of by her siblings when one day her dad and I aren't here.  I know with no reservations that Jordan and Evan will willingly accept that responsibility and will always have her best interests at heart.  None of us knows what tomorrow it is such a great comfort to me to know that.  Of course Jordan and Evan are just 16 and 14 so they love her like siblings do, not parents. Although the realizations of this day were hard for Jordan, it helped me to know that when that day comes, she will have the insight she needs to understand Jessie and know what's best for her.  I thank God for showing me that.