Mooo-o-o-m, you aren't keesing (kissing) me!

A good bit of time and conversation have been spent recently trying to make decisions about Jordan's school year (college) next year.  My sweet girl has had to weigh a lot of things and has been feeling conflicted and emotional, trying so hard to make the BEST decision.  Jordan has been dual enrolled this year, her senior year. We spent several hours last week at the community college where she's been taking classes, talking to her dual enrollment advisor and several others, getting the information we needed to help her make decisions.   

In the end, after more emotion than Daddy's like to deal with, I thought Daddy had some good advice for his big girl.  She'd been finding out all she could about 2 particular career choices and was afraid that no matter how hard she tried, she might later look back and wish she'd gone the other direction.  Daddy said, "Jordan, if six months from now you decide PTA (physical therapy assistant) isn't the direction you want to go, and you want to be a rodeo clown, your mom and I will find a rodeo clown school and do our best to get you there."  Of course, his point wasn't about rodeo clown school, (is there such a thing ? :)  Daddy wanted his girl to know 2 things.  First, you do your homework, investigate the best you can, and make the best decision with the information and life experience you currently have.  Mama and Daddy are going to support you and help you.  Period :)  Second, you won't ALWAYS make the best decision the 1st time around, no matter how hard you try.  No matter how much homework you do.  Sometimes, you may look back and think you might have gone another direction.  It's impossible to never make a mistake.

All this time, attention, and emotion given to Jordan was a wee bit hard for Jessie.  It wasn't purposeful, but every time I turned around, Jordan and I were talking and Jessie was having to wait her turn.  She recently told a friend of mine, "I HATE waiting."  She does :)  This particular morning, I would talk to Jordan, kiss and play with Jessie, talk to Jordan . Jessie was patient  for a while.  This was, after all, day 3 of all this going on.  Her times of waiting seemed too long to her compared to the amount of time she was getting attention.  Finally, she blurted, "Mo-o-o-m  (then thinking a minute what she wanted to say, when I looked at her for an explanation), you aren't keesing (kissing) me!  We all needed the good laugh and kissing session that followed.   College and career decisions are important.  Kissing is important too :)

Christmas 2011

The fall of this past year was so incredibly busy. A real juggling act between home and outside commitments. Much of what was going on required mental effort. By the time Christmas break from homeschooling came around, I very much felt that I needed a break. Mostly a break from thinking :)

I love what CHRISTmas is really about. I love the family time and traditions that we have at Christmas. I hate when those special times are polluted with stress. This Christmas I was so very determined to avoid the feeling of stress that comes with so much we "have to do". I had to keep evaluating all through the season what I really wanted or needed to do and what just "felt" important or necessary. I wasn't sure what "simplifying" Christmas was going to look like, but I felt that it was necessary.

This year we never put up any lights outside. Not on the house, not in the bushes (we always at least do this:), none of the wreaths went up on the front windows or the front door, no lit garland around the front door. This year I just didn't do any of it. At first, it wasn't my intent not to do it at all, but when I kept not getting around to it, I finally just decided it was too late to be worth the trouble. I didn't put up many of the indoor decorations that I sometimes do. None of the Santa pictures from years past were drug out of hiding. I didn't do any real baking this year. No baked gifts for friends. Sometimes I genuinely enjoy the baking, but this year, I just didn't want to do the grocery shopping necessary for baking. So I skipped it all this year.

So what did I do with all that time I usually would have been doing other things? I spent LOTS of hours chillin' with my teenagers. Watching tv. Watching movies. Drinking coffee. Drinking hot chocolate. Making and enjoying frappes. Playing Wii with Jessie. Snuggling. We rented so many movies from Redbox while we've been on break from homeschooling! It has been such a deliciously relaxing time. I can't remember when I've spent this much time doing...nothing. This might not be the same way another family would choose to relax, but without spending any money(redbox is so cheap it doesn't count:), this was our escape, and it has been so wonderful.

I had not done any Christmas shopping till well after Thanksgiving, so I started to get a bit stressed with shopping, shopping, shopping, looking for certain elusive items for my kids. Each time that feeling started to sneak up on me I just refused to let it be.

I have done some long overdue organizational projects around the house, partly in anticipation of having a houseful of folks Christmas day. And partly, just because I always try to take advantage of school breaks to accomplish projects that there isn't time for when school's going on. But, it didn't seem so daunting since I'd had some down time to clear my head. In the months leading up to Christmas, there were times it literally hurt just to think...not do, just think about some things that needed to be done. I had taken to saying, "lalalalalala", when someone brought something up that I couldn't bear to think about. I'm not exaggerating the level of mental exhaustion that I felt. Overwhelmed. Putting off important things because my mind was just too full.

Simplifying Christmas this year was just what we needed. We had a great Christmas! I hope next year that I will add back some of the things I skipped out on this year. We'll see, but this year Christmas was exactly as it needed to be.

We DID put up the tree :) Years ago, my mother in law (who is with Jesus now) gave us some lights that play music, every year they are first to go on the tree. I sat in the recliner, the music from the lights playing while we decorated. All but Jessie enjoyed coffee while we decorated. As I pulled each ornament out of the box, I reminded the kids where nearly every ornament came from. Me, the person who can't remember yesterday :) I would hand the ornaments to the kids and they would put them on the tree. A sweet, special time. As I think about it now, I can remember and feel the sweetness of that time together. I am ever mindful, that with a 15 and 17 year old, the time I have left with them at home is precious.

I don't recall, before this year, having been to church on the actual Christmas Day. We had a very sweet,simple service on Christmas Day. The thoughts and feelings from the service stayed with us, hovering over the rest of the day. We had The Lord's Supper. It seemed so fitting on the day of celebrating His birth, to remember His sacrifice for us. How very much He loves us. I remember singing the words, "For He alone is worthy", my heart full of thankfulness and praise.

Since Christmas, we've still been playing wii and watching movies. Starting to try to get our minds around the idea that tomorrow we start back to school. Even though I'm not looking forward to going back to the usual schedule, I do feel refreshed in a way that I definitely don't usually after Christmas break. It's been so nice to just be still.

I'm hoping that I can find a way to modify my "if it causes stress, just skip it" philosophy to everyday life. With three kids, it is just so hard to discern the good (all the good things we participate in) from the best (not taking on so much that there is no peace in my cluttered mind).

As we TRY to get out of bed tomorrow at a reasonable hour, and start back to school, I'm hoping not to need the words, "lalalalalala" :)

I'm Back! I think :)

We've gone through such a season of busyness in our lives in past months, there just hasn't been time for blogging.  In the past I've gotten bogged down because I felt I couldn't post some of our homeschooling adventures without adding photos.  My computer is ancient and slow, so it just didn't happen.  I DO hope to do those things because I still find there to be a shortage of blogs by mom's homeschooling their children with Down syndrome and I so enjoy reading other's ideas, especially the ones with photos :)  However, I love to share and chronicle for myself our family life and Jessie with all her Jessieness ;)  In a lot of areas of my life as I've gotten older, I've decided DONE is better than perfect- never- finished.  Jessie does so many cute and funny things on a daily basis that I really want to keep a record of them, even if noone else ever reads them.

I have recently been DVRing Paula Deen's cooking show and sometimes Jessie likes to watch it.  One day when she was helping me cook, she said, "These are our dry ingredients."  LOL  I'm not sure whether she does  understand the concept of "dry" ingredients.  She might. 

This Christmas season when we were out shopping Jessie saw some pots and pans with Paula Deen's picture on them. She told me she thought I needed to have them.  I told her I didn't have room for them in my kitchen, that my kitchen was too small.  The conversation went on a bit....she has not forgotten that conversation ;)  She's brought it up several times, that she wants me to have Paula Deen's kitchen.  She told me last night at bed time that I NEED to have Paula Deen's kitchen.  A big one.   She wants to give me Paula Deen's kitchen for Christmas :) 

The Best of Friends

I loved watching my teenagers tonight.  I'm not through mothering them, of course, but it's a relief this far down the road to see all our hard work hasn't been for nothing :)  I've always told them :  friends may come and go, but you're stuck with each other forever.  I've always encouraged them to feel responsible (within healthy boundaries) for sticking together and helping each other.  Tonight I saw Evan excited to be able to show Jordan some self defense moves (he'd just learned them) and I saw that Jordan admired and respected the knowledge Evan had.  Afterward, talking to Jordan about it, SHE SAID how he just seems so grown up.  It struck me that she's proud of how he's growing up. What mixture of emotions to see my babies, MY babies, my BABIES so grown up.  I'm constantly looking, noticing, memorizing almost, the details, of their grown-up-ness, trying to hold onto the moment. I know teenagers are "supposed" to be such monsters, and mine do have their moments, but like the other stages of their lives I am watching them in awe, a mixture of love and pride and sadness for the time that's gone, I can't get back...and anticipation of what comes next. 

When they were little I always hoped that when they were older, they'd be like they are now.  They can still fight like cats and dogs!! But, they are the best of friends.  I am thankful. 

Happy To See Poop? Our recent GI issues.

Jessie has had significant reflux for as long as I can remember.  At one time or another she has taken Zantac (the mildest, this was the first reflux medicine she took), Prevacid and Prilosec.  If we owned stock in Mylanta or Maalox.....you know.  A year or so ago she started having loose bowels, all the time.  Not like you expect with a virus (not as many times per day), no fever, didn't feel sick.  Finally, after this went on several weeks, we determined the culprit was the Prevacid she was taking.  Her gastroenterologist said sometimes drugs in that class, proton pump inhibitors (think I got that right :), after taking them a while can cause diarrhea.  We switched to Prilosec and in about 3 days, we saw that had indeed been the cause, as the diarrhea stopped.  Prilosec and Prevacid are both proton pump inhibitors, but I guess sometimes you can take them for a while before that symptom might arrive.  Prior to this, Jessie had been taking Prevacid, off and on, for several years.  So now, after a little more than a year of taking Prilosec, the same symptoms started again.  It's always tricky at first cause it's not that abnormal for Jessie to have a little issue for a couple of days here and there with no sure explanation.  After more than 2 weeks of this again, we have changed to a new drug, Axid, in a different class (not sure what) but it isn't a proton pump inhibitor.  Finally, we have poop with shape to it.  That makes me very, very happy :)  Normally, it is rare for Jessie to have poop accidents, but when all this was going on, it was constant.  I finally decided that her tummy must have felt unsettled for so long that she no longer could interpret the signal.  That was a sad thought that my baby's tummy had been bothering her enough that she couldn't tell she needed to poop. 

For any of you reading that might have a child taking a proton pump inhibitor, or are taking one yourself, it's a good idea if you've taken it a while, to have your B-12 checked.  Never mind that the doctor may say it isn't necessary :)  Initially, I had her B-12 checked because she had a few gray hairs and alopecia, and a google search revealed sometimes low B-12 is the cause of gray hair in children.  AFTER we discovered her B-12 was at the very lowest within the very large normal range, another google search showed that with the great numbers of people now taking this class of reflux drugs they are finding B-12 deficiencies.  Jessie now takes a B-12 tablet and as long as we take it semi-regularly her B-12 comes up to the middle of the normal range.  If we stop it it goes back down.

I have found it to be SO important to have a pediatrician that really listens to my concerns, and will go along a bit with me.  Jessie's pediatrician checked her B-12 for me after I told him I read that gray hair is sometimes associated with low B-12.  He agreed to check it to put me at ease, but assured me that it is rare to find a B-12 deficient child that eats meat.  We found one!! Jessie is a meat lover!

I share the poop story with you not cause I want to gross you out but because I know reflux is pretty common amongst younguns with Down syndrome.  If you have dealt with reflux and have any suggestions that might be helpful please leave me a comment!

A Mama's Heart Overwhelmed

It took me by surprise, the overwhelming range of emotions I felt watching as Jessie participated in the children's musical at church tonight, "Peter Cotton's Tale."  I'd watched the kids many times as they practiced.  I'd helped in the sound booth.  So many thoughts as I watched tonight. I didn't expect to be so emotionally affected after having seen it so many times :)

One of the main thoughts I had was, most of the members at my church probably aren't familiar with the term, "inclusion."  They've probably never given that word a thought.  What my church knows is LOVE.  Because of love, my church family does such a beautiful job of including Jessie.  Tonight, Jessie sat beside Mrs. Wanda.  Mrs. Wanda is the music minister's wife, she has been Jessie's Sunday School teacher, her Awana teacher and has known Jessie from birth.  Mrs. Wanda sat there beside Jessie, cueing her when to stand, when to sit, and when the last song came on Jessie was able to follow Mrs. Wanda in doing the motions for the song. Jessie had a small chair (the only one that had a chair) beside Wanda.

We came to this church when I was six months pregnant with Jessie and did not know she would have Down syndrome.  All the folks that teach her and work with her have known her since the day she was born. My church family may not know what inclusion is, or have any idea what a hot topic it is, but they are good at it.  In Sunday School, Vacation Bible School, and Awana, they expect from Jessie whatever is her best.  They make adjustments and accommodations when they are needed. She is helped when it is needed but they all are proud of how much she can do herself.  When she was younger I was pretty much always with her, that was my choice.  As she got better at being able to communicate I slowly backed off.   

There's a lot of talk about inclusion, but often, I don't think what's called inclusion is really inclusion. To just be present as part of the group, in my opinion, doesn't always count as being included.  I found this definition of inclusion that I really liked:  “Inclusion is a sense of belonging: feeling respected, valued for who you are; feeling a level of supportive energy and commitment from others so than you can do your best work.”  Disabilities or not, that's what we want for all our kids. 

Watching Jessie tonight, my thoughts went back to a conversation I had with the Lord in the first day or so after Jessie was born.  I knew so little about Down syndrome.  Now some of the thoughts I had then I realize to some of you might seem exaggerated....but initially, I had no idea what Down syndrome meant.  I told God that whatever this meant for our family He was going to have to help us accept it.  That He would have to help us through.  I told Him if I were to be feeding her every meal for the rest of her life, if she were to be completely dependent on us, whatever it meant, He just needed to help us.  Tonight, watching, I thought about those thoughts, that conversation.  I watched my beautiful pig-tailed baby sing, "it's such amazing grace, it's such amazing mercy, it's such amazing love for me." She sang almost every word of the song, "Because of Your Love" and did motions with the song.  My heart was so full and overflowing.  The combination of the gratitude I feel for the Lord for all he's done for me, the pride in seeing my baby do so well and sing her little heart out, and the love I feel for my church family for the way they've loved her and us....this Mama's heart was overwhelmed with love and gratitude. 

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 this....no 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......