Saturday, August 18, 2012

How long is the grieving period?

I would be very interested to hear the thoughts of other mothers of children (or adults) with Down syndrome on this subject:  How long is the average time, in your experience and/or people you know, that a new mom grieves when she finds out her baby has Down syndrome?  There have been several things that have caused me to think about this.  A friend and I were discussing this today because of something we'd read. 

Last summer, our DS group was searching for a book to add to our bags given to new parents.  I read three books written by mothers of children with Down syndrome, hoping to find the one I would have wanted to read soon after the time Jessie was born. I've read other things since and now all the stories are mixed together in my head :)  While I can't remember the individual stories, I remember being struck by how long (for some) the grieving seemed to last.  Why does this matter to me?  Well, first, this kind of thing tends to roll around in my mind and be over-analyzed anyway.  Second, it affects how I might respond to new mothers in the future. And, it will help us decide what book to include in our new parent bags.

Two of my closest friends are mothers of children with Down syndrome.  For each of the three of us, the time of true grieving, feeling completely overwhelmed with -what-in the-world-am -I going-to-do-with-this-information, was short.  It was a painful, uncertain time, filled with rational and irrational fears, but the time it lasted was short. We continued (and still continue) to experience painful realizations that hurt for a moment, or a day, or a week, but never past that initial time would I describe feeling overwhelmed with grief or fear. 

I would be very interested in your recommendations of what books you've read that would be what you would want to read in that early period.  Currently, our new parent bags include:  Babies with Down Syndrome, a notebook of stories of our local families including pictures, a burp cloth printed with "I am wonderfully made" and another's the last book that we're uncertain of what it should be.  It's been a couple of different books in the past and we haven't settled on what it will be now.

Although I haven't posted here in forever, I hope I will hear from some of you :)

Wednesday, February 29, 2012

A Funny School Moment

Ah, this kid never ceases to entertain me :)   We were doing our school work.  A few days ago I had printed a list of Dolch sight words and I was going through the list seeing which words Jessie knew and which ones she still needed to learn.  This type of task, where she encounters many words she doesn't know, is always frustrating for her.  I usually don't keep pressing much once she gets to the frustration level. We had started with the pre-primer and worked up and covered much of the list in one day last week.  Today, I really wanted to finish the list so that I could make a list of the words we needed to learn.  Jessie was getting more and more aggravated when there were words she didn't know.  Finally she told me, "finish tomorrow."  There were only a few left, so I pressed on.  In just a second came, "I'm sick and tard of it!"  I laughed and hugged her.  I told her we were almost done. Then, when I pointed to the word "if", which I knew she knew, she said "sweating".  Sweating? Really?

 I was very pleased with how many words on the list Jessie knew. This was a list through 3rd grade. There were some words she's learned that she didn't remember and will just take a little review. But, there were many words I didn't think she'd know that she did.

I probably should have broken the list into more days so she wouldn't be as frustrated.  Because I have been completely wrapped up with working on scholarship applications with Jordan, Jessie has been slighted with her school, so I felt pressured to get more done this day.  She showed me, huh?

In every possible way, this kid keeps me on my toes :) 

Saturday, January 14, 2012

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 :)

Tuesday, January 3, 2012

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" :)

Tuesday, December 27, 2011

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 :) 

Monday, May 23, 2011

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. 

Friday, May 20, 2011

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 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!