SAL-VA-TION: by grace

E-LEV-EN: children from 1984 to 2006

HOME-SCHOOL-ING: since 1990

DOWN-SYN-DROME: susie and gabe

GRAND-CHILD-REN: since 2010

FAITH-FUL-NESS: my steadfast rock, my biggest supporter, my leader, my friend, my love, my husband

Wednesday, March 28, 2012

Grandchildren Update

I have this picture set as the background on my computer and seeing it reminded me that I didn't post our December group photo. They're tired, battling colds, and somewhat confused by all of the parents clapping hands and snapping fingers trying to get them to smile! At least everyone has their eyes opens and nobody's crying.

Here are some of my favorite pictures of six of my seven cuties (photos of Cameron coming up next month)!

Carson--the eyes say it all, mischief, trouble, and plotting for action! You can just tell there is an endless well of energy simmering below the surface of this rambunctious little guy. He runs and throws and jumps and moves on to the next things before you've figured out where he's just been. This is exactly how I remember many little "White boys"!

Keira--she kept patiently sweeping her tongue back and forth trying to eat this ice cream as if she wasn't quite sure if really had it or not. Keira completely stole my heart (as if she hadn't already) in December when she followed me around with hands up saying, "Nana, up?" with quiet persistence and patience. It paid off, we skipped cookie baking in exchange for Keira-holding and book-reading.

Vince--the boys give it away with the eyes. Vince's piercing brown eyes are contemplating, calculating, and just figuring it all out. He just delights me with his huge grin and gleeful "Nana!" whenever he sees me walking up to his house through the window. I swear this guy has some secret intuition and knows when I'm coming.

Karissa--lively, spunky, persistent and joyful. She has the same sing-song-ey, cracking voice that her Mama had as a toddler. I hadn't even remembered Ellen's being like that until I heard Karissa in a cute little video spelling home--"H--O--M--E....home!" Add to that her favorite answer of "Yep" and we just can't help laughing.

Sadie--easy, content, and scheduled. I don't remember "schedule" being part of my vocabulary with my babies before they were 6 months old. But Sadie knows just what she needs and when; and, as long as Mom obliges everything is fine. She likes bolting her meals, going to bed early, and getting rocked by her Daddy.

Veda--bright-eyed, cheerful, and eager to go. Veda likes a frequent change of scenery both with places and people. She wants little to do with a schedule because you never know when something unexpected might happen that you don't want to miss! Veda loves attention, ceiling fans, and her Daddy.

I just love having three of these little ones close by and really, really can't wait to spend some time with the others in the coming weeks!

Friday, March 23, 2012

My National Downs Syndrome Day Experiences

I'm a few days late, but since most of you have never heard of National Downs Syndrome Day I didn't think it mattered. (I guess I'm not really up on it either, it's called World Down Syndrome Day--oops.) The date was March 21, or 3-21, which is a numerical likeness of the scientific name for ds, Trisomy 21. It literally means a triplicate of the 21st chromosome. We normally receive one of each of 23 chromosomes from each parent, giving us 23 pairs, or 46 chromosomes. Someone with a trisomy has an extra chromosome. The most common trisomy is is T-21, or Downs Syndrome. It is the most common because it is the most "survivable". The 21st chromosome is the shortest, containing the least amount of genetic information. Having an extra chromosome inevitably messes up the genetic balance in a system and the more genetic material on that chromosome the greater the damage. Therefore, having a triplicate of any other chromosome results in a much higher incidence of biological disturbances which more often leads to pre-born death in the form of miscarriage or still birth.

I hadn't intended to give a science lesson, but I guess I just did. Perhaps because some of my own children weren't aware of some of these basic facts that have so directly impacted our own family. What I really set out to do was share a few recent stories on the blessings and trials we receive from others as the world relates to Gabe.

First, the trial. Last Saturday we were out playing at the park with our grandson on his birthday. The older boys and Keith were playing on the outdoor basketball court while I watched Gabe, Vince, and Lisa at the playground. A young boy (about 7 or 8) was playing with the kids and asked Lisa if "that boy" (Gabe) was her brother. She told him that he was and the boy nonchalantly claimed, "He goes to my school and I always laugh at him." Lisa was caught off guard and responded with, "What?" The boy, again, very matter-of-factly told her that "all the kids in my class laugh and make fun of him". Lisa was stunned and asked him, "But why would you do that?" His response was, "Because he looks stupid."

I guess I knew this was coming and that Gabe would be the target of teasing at some point. I just didn't quite expect it yet. Lisa was so very sad about it. She couldn't understand why anyone would want to tease or make fun of Gabe. She told me, "I don't get it, Gabe looks just like anyone else." I love how her heart sees.

I'm not upset with the little boy, I don't claim that his parent must have taught him to tease others, I don't think he's part of an evil pact of children out to bully and make life difficult for those who are different than the norm. He's just a typical kid working out the way he sees life in a typical kid fashion. He could have been my kid. Kids have their own ways of figuring out life and coming to conclusions about good/bad, right/wrong, normal/abnormal, acceptable/unacceptable, and even stupid/smart. Some of them do better at it than others. Of course, some of them are influenced by parents or friends, but I'm just not jumping to conclusions about this particular boy.

My response to this situation was to talk to the staff at Gabe's school about the incident. I spoke with his teachers and aides who directed me to the school guidance counselor. I made it clear that I did not want this little boy "punished". Instead, I gave them some ideas on how to help educate students to be more understanding and compassionate towards kids with disabilities--something that, ironically, was next on the school agenda for the guidance counselor. (And, no, I don't believe this was just an ironic coincidence.)

As logical and unfeeling as I tried to be in the whole thing, my heart broke a little bit for my son. Maybe it broke a little more for me and for Lisa because, at this point, Gabe doesn't feel bad about it at all. I just know that at some point he will, and I just hate that for him.

Now, the blessing. Two days ago, on 3-21, I was at another park in town pushing a swing next to a young mom who asked if I was Gabe's mom. When I told her I was she said that her daughter, Ava, was Gabe's reading buddy. I knew that Gabe's class was paired up with first grade reading buddies and that his was a girl named Ava but I didn't know any more. Ava's mom went on to tell a beautiful story.

Ava was actually assigned to 2 students as a reading buddy and she read to both Gabe and her own little brother together. Gabe's class was split into two smaller groups a few months ago and the teacher approached Ava and told her she was going to have to just pick one of the boys for whom to be a reading buddy.

Here is Ava's response as told to me by Ava's mom:
Mrs. V____, I know that I should probably stay with my brother, because he's my brother, and I really don't want to hurt his feelings but I want to stay with Gabe. You see, I have a cousin Luke who has Down syndrome and I know how he needs a little more special attention and patience. So, I know how to be more patient with Gabe than most of the other kids and I really want him to have a reading buddy who will be patient with him.

Ava had her teacher in tears and when the teacher told her mom she had her in tears and I find myself welling up with tears as I pass the story on again.

Little Ava is only 6, but she reminded me that Gabe will not only have ridicule and teasing to look forward to as he grows, but he will have understanding, compassionate, patient people like Ava to soften some of the blows.

God put me in the paths of two very different Gabe experiences to make this National Downs Syndrome Day a very educational, poignant, and memorable one for me.

Monday, March 19, 2012

One last basketball shout-out

The weather is warm, unseasonably warm. The snow is gone, the ice is gone, and spring bulbs are coming up. Appropriately, high school baseball practice starts today, in exactly 2 hours.

But I have one last note to share on the winter basketball season. Shane's team ended up winning the Regional title before falling to Antigo in the sectional semi-finals on that Thursday after his fateful ankle sprain. Shane played in the game but was just not able to play up to his usual potential. It helped a little to see Antigo lose their next game decisively to the team that would breeze through and capture the State Division 2 championship, Onalaska.

Shane received a unanimous all-conference first team selection and is preparing to start practice with a summer team in just 2 weeks. His coach has put together a highlight video from four of his games this year if you want to see the best of his best. This is the last post I'll do on basketball...until next season. I promise.

Shane is number 14. In the beginning he will be in white, then switch to green, and by then you'll get the hang of which one is him.

Thursday, March 15, 2012

It's OK if you can't "do it all"

I can't tell you how many women have said to me, "I don't know how you do it all." I try to tell them, "I don't do it all, I can't do it all." But, they never seem to believe me (unless they marry my one of my sons and finally see for themselves how much I don't do!).

Somehow, having a big family makes women feel that you are doing something super human and accomplishing a lot more than they are.

Here are some facts from my world:
--The housekeeping suffers the most. Even if kids help clean (and they do) they're not very good or very motivated and with a lot on my plate it doesn't always get checked very well. We end up with too much dust, too many spiders, marks on walls, cluttered storage spaces, and very grimy windows. My consolation is knowing that when I do get to really cleaning it won't look any different than it would have if I'd been keeping up with a weekly regime.

--The laundry gets done, but not that well. I seldom spray stains. I tell the children they have to tend to items that need extra care--spray or soak it and add it to the appropriate load. I don't check pockets, that's the job of the wearer. Just this week I washed a leather wallet, a library card, and $3 that were left in a pocket. I don't iron (well, hardly ever), you can still be a nice person even if you're wrinkled. If it's really bad I toss it back in the dryer with the next load and try to catch it as soon as it's done.

--When we had a dozen or more in the house we lived with survival cooking. Meals were typically one-pot things geared toward ease and nutrition. I wasn't too interested in taste-appeal or variety. A side benefit is that everyone's cooking looks really good next to mine. My daughters-in-law haven't had to try to live up to Mom's home cooking!

--My bedroom is the dump spot. After a week of homeschooling, going to four basketball games, driving to piano lessons and appointments, and then having a group of thirty for some weekend event the house is usually in need of more attention than I can give it. Unfinished projects, school books, and any other clutter gets gathered up and dumped in my room where it sometimes remains for an embarrassingly long time.

--Household projects don't just get put on the back burner, they're not even on the stove. I have 2 sets of curtains that need to be hemmed. I put them up anyway, letting them bunch up on the counter above the window. They've been bunching there for 4 years now and I have no immediate plans to get to them. Add to the list painting projects, wall repair, wall and ceiling replacement and the back burners are all full to overflowing.

--Personal grooming can really take a hit. Just today I got through all of our morning routine, meals, schooling, Gabe-time, prepping for a birthday party, and out the door for our afternoon sports club before I realized that I hadn't combed my hair, or even looked in the mirror. I'd also forgotten to eat (now that rarely happens) and a little later in the afternoon I remembered that I hadn't put on deodorant either. You can guess how that realization came to me...

These things don't all get missed all the time. I pick up the pace in one area and another goes slack, then I pay some attention to the slack-off thing and something else lags. It's kind of a general cycle of moderate neglect.

I could do better. I know I'm a slow-paced kind of person. We all have our own internal clock and speedometer and sometimes I think mine is set just slightly above idle. I have to conscientiously tell myself to hurry and move faster if I want to get things done quickly. I'm just naturally too relaxed. The positive side is that I don't get too stressed about anything. The negative is that I probably am left with more things that I could be stressing about!

I like to think that the main reason for my "behind-ness" in these areas is that I'm investing my quality (and quantity) time in my family--husband, children/spouses, and grandchildren, tending to things/people of more significant value. I want my legacy with them to be relational, not temporal. I hope they relish spending an evening playing games with me more than the memory of my neatly hemmed and pressed curtains.

Some of the demands on my time are lessening as our family changes and fewer children are at home. My bedroom and closet are pretty normal looking right now and there's been a bit more variety and creativity showing up in our family mealtime. But by the time I'm actually "doing it all", I'll have an empty house and lots of quiet time to finally get to it least until the grandchildren come to visit!

Wednesday, March 7, 2012

A Long, Long-Overdue Gabe Update





Here's a look at his year and some significant updates.

Gabe's 6th year started with significant sorrow.

Just one day after his last birthday, Joey and Jamie lost their daughter Kaylee Hope.

A month later we spent a week with Carson and Keira so that Joey and Jamie could get away together. Gabe didn't comprehend the reason behind the visit, he was just excited about being Uncle Gabe for a week--with lots of hugs.

Maybe a few too many hugs for Carson

We've been working on writing, or I should say I've been working on getting Gabe to to some writing. He isn't so keen on it, he's definitely a gross motor skills guy, none of this finger coordination stuff. I thought he might enjoy the chalkboard more than pencil and paper. I was right! Sort of.

Waiting to be discharged after a hospital stay in May.
Gabe woke up with wheezing and a croupy cough that I couldn't get under control. Two doctors diagnosed him with asthma but I was sure they were wrong. I know we always need to question our doctors to make sure we get the best care for our children but that is even more true with children with special needs. I had noticed changes in Gabe's breathing, especially when he was sleeping and was pretty sure that the adenoids that we removed years ago were coming back. I consulted with our pediatrician and headed back to Madison to see a pediatric ENT. What has followed is a scope (adenoids blocking 50%) a sleep study (definite apnea), and medication to reduce inflammation (improved breathing but still apnea). I will have a phone consultation next week and our likely response now will be an adenoidectomy.

Summer time at the lake

We took a family roadtrip/vacation up through Canada, to Washington and the Olympic Peninsula, through Idaho and Montana and home. Making the ride fun is part of the planning with little ones in the van.

Canadian Rockies to me...

...a park and a swimming hole to Gabe

Puget Sound ferry

The US's only temperate rain forest is on the Olympic Peninsula

The northwest Pacific coast offers some of the best rock-throwing opportunities for little throwers. Gabe threw non-stop rocks for almost six hours, sometimes windmill style using both hands alternately. We counted how many he was throwing per minute and came up with a very conservative estimate of 11,000 rocks thrown for the day.

Sandpoint, ID--we stayed with Keith's boss from his first college co-op engineering job. Roger is a kind, generous, and remarkable host. He took everyone up for a ride in his plane (except Gabe who was just happy to get to sit in the plane).

Roger has built this little fantasy-land on his property. The deluxe treehouse in the back is outfitted with electricity and a queen-size bed. Our older children took turns sleeping in the tree. Maybe next time I'll be so adventurous.

We loved his signs

Montana and Glacier National Park

We hadn't planned to spend five days in Havre, MT but hitting a buck just before the weekend changed our plans. It didn't bother Gabe a bit!

Gabe always enjoys our week of family camp in August. We're outside all day, he gets to swim, play ball, and be with other kids all week.
Gabe with his cousin Lauren (4)

Not so sure she wants to share the ball

With the end of summer came an overnight trip for Gabe, Lisa, and me to take Troy to college.

We got him moved in and then drove up to LaCrosse to spend the night before the first game of Chet's MTU football season. We made the drive part of the enjoyment of the trip taking the river road and looking for birds, racing a train (parallel to it, under 45 mph), learning about locks and dams, and stopping when we saw a big park.

This one even had a "real" slide--over 5' high made of metal!

LaCrosse has a fantastic Chilren's Museum. We have a family pass to our local CM that let's us into any participating CM in the country. Gabe loved the morning we spent here.

Meeting Clifford was a lifetime highlight for Gabe. When we heard the announcement over the loudspeaker that Clifford was making an appearance on the first floor I couldn't run fast enough to keep up with Gabe down the stairs. There was a large group of children circled around the Big Red Dog but they were all afraid to approach him. Gabe was not only not afraid to approach him, he wasn't afraid to barge through the middle of the pack, yell "Hi Clifford!" and give him a big hug!

It absolutely made Gabe's day and opened the door for the rest of the kids to approach Clifford.

Probably THE biggest change in Gabe's (and my) life--he started school. This was a difficult decision for me to make. I have a system, guided by conviction and habit. I start teaching my children when they're born and they stay home and learn with me until they're at least 14, then we re-evaluate and go on. So, why was I even considering something different? Because Gabe is different, and I wanted to make sure I was making the decision that was best for him. So, we tried it. Just two days a week with the option to pull him at any time. For a few months I kept things going just because I was benefiting from have two days to teach and do home things without Gabe here. But that's not a good reason to send him to school. I was VERY happy with the people who were caring for him, I loved his teacher, his aides, and his bus driver. Even if he wasn't learning I was comfortable knowing he was safe and well cared for. But, in the last months I've seen the benefits to him. He enjoys the environment and does well in the small group settings. He's definitely improving in many learning areas with the people at school supporting the work we do at home. And it's really nice to not be doing all of it on my own. Gabe needs a lot more interaction and one-on-one to thrive academically and that takes time. He also gets bored with just me, so he learns better when there are more people taking turns with the teaching.

Here's a blurry first day picture

Gabe's 4-K school picture. He has a composite of 29 kids from the 2 classes at his school. He can name about half of the kids on his own and the other half with me providing the first letter of their name.

Gabe's greatest thrill was getting to ride the bus! It took about a month to get all of the paperwork in and sorted to get him on the bus (wouldn't you think that could have been handled during the 10 weeks of summer?--I still have public institution complaints). During those weeks he would beg to get on a bus after school. He cried inconsolably the first day that he was denied that privilege.

With fall comes football. This would be our last of seven years driving up to watch the Huskies.

One of the best things about these games have been the times for family camaraderie. After one particularly warm-weather game we found a great spot on Lake Superior for a picnic.

Grandma trying to get a little bit of the sand off, an exercise in futility.

Gabe not only loves hugging his nieces and nephews, but he rather enjoys getting in trouble with them! Gabe loved having Karissa (and Ellen) with us for the weeks while the guys were in India. There was lots of time for trouble!

Crawling into Karissa's crib when she's supposed to be napping!

Karissa's not the only one who got woken up. Carson and Keira got an early Gabe wake-up call. A baby video kept the cranky babies entertained while the moms scrambled to prepare for a long day.

A neighborhood walk with Lisa, Ellen, and Karissa

Two more nieces! Gabe could not love the babies any more than he does. He just delights in them.

Gabe entered into the Christmas celebrations this year. He hung all of his own ornaments and delighted in pointing them all out to Daddy.

He also had a part in the Children's Christmas pageant at church. He played the part of a sheep and did a great job learning his part, sitting where he was supposed to sit, crawling where he was supposed to crawl, and singing the group songs at the end. He did add a few adlib parts to liven things up--sheep ARE supposed to say "baa" right? Gabe didn't understand why that wasn't a significant part of his role, so he added it. Also, if people bring gifts to the baby, and the baby doesn't open them, shouldn't someone else to it for him? Gabe thought he should be that someone.

Finally, Gabe had his three year check up with the cardiologist for a full exam including EKG and echo. Everything from his repair three years ago was holding fast and working just how it should. I was hoping we'd be done and that all things heart related. However, there's just one little thing... It seems like there's always one more thing. Gabe has one slightly leaky valve. It may be nothing, it may need some attention. I'm not worried about it, though. She said we would look at again in ten years. I don't worry about things that are ten days away much less ten years!

Thank you Gabe, for another eventful and wonderful year. You are my love!!