Too Much Fun, Part 2

You may wonder if I am writing part two seriously or tongue-in-cheek. Believe me, I am serious, even if it appears at first that I am not. You see, I did not even have the chance to sit on my front steps, hold my head in my hands and cry over Baby Sister’s departure. I loved having some girl time more than I can say. I love living with 3 guys, I truly do. But they don’t love all things girly. (And I guess I am glad for this.) But sometimes my prissy side gets a little lonely. And no one laughs HARD at my sort of humor the way my sister does. Sigh. I miss her as I write this. But, alas, back to the point. I did not have an hour after she left before I was on the road with two of my guys to go trout fishing for three days. Yes. You read that right—Ted and N. were throwing things into the car as I was eating one last cupcake with Baby Sister, then I was off on a fishing adventure.

My poor little psyche was so confused. For almost a week, my sentences were finished before I could barely begin, I shopped for Yellow Box flip flops till I dropped, “did lunch”, and talked more than I have in a month. Now I was heading to fish. In the quiet. With boys. Not bad, just different.

Because Ted knew I had been encumbered with the responsibility of having Too Much Fun, he gladly made all meal plans and did the shopping for our time at the cabin. (Good thing, since I barely remembered we were going.) I threw my things in a bag as I chatted with my sister and hoped I wouldn’t forget anything. Ha. I got there with only the underwear on my person and no toothbrush. It would have been nice if the absent toothbrush had been noted before the first trip to WalMart. Thankfully, the remote cabin I had pictured was not terribly far from Wally World. We had hoped to stay remote, but civilization kept calling. The first two trips were of the above noted nature. On the third night, poor Ted accidentally burned his hand using a holey oven mitt to extract a pizza from the oven. So, when it wasn’t getting better, we went in search of relief for him. (He recommends Burn Jel Plus – has good ol’ lidocaine in it.)

The fishing part was way more fun than I had expected. We actually booked a guide with a boat, who knew how to dodge all the shoals on the river. He met us at 7:30 a.m., with fog all shrouded over the 50- something degree water; he explained that it formed from the heat meeting the cold water. It was eerie and fun to glide through that wispy fog to our trout-hauling destination. At first I thought I might need a jacket because of the chill coming off of the water, but a half hour later, the heat burned through and not a trace of a chill was to be found. He knew the lucky spots, and it wasn’t long before I was the first one reeling one in! My guys were nothing short of amazed, I think. N. was very pumped as he began to haul them in himself! He was so intense and so serious that I wondered who had inhabited his body. He sat very still, intent upon his purpose for such long periods of time. Well, he caught more fish than anyone and was way competitive about it, too. (This is a theme with him. I would hate to think what it would have been like if he had not caught any.)

Our guide was super nice and easy to be with, and very handy for cleaning the fish, too. N. stared in amazement as he sliced them open, popped a few of their heads off (in case we liked to eat them that way), and rinsed them. (Can I just say ewwww?) Ted took mental notes about the best way to cook them and we ate some of them that night.

I enjoyed the getaway-- the cabin was very nice and extra fishing on the dock in the evenings was a plus. Having meals taken care of by my husband was terrific and watching my son enjoy his "new favorite hobby" (as he said) was a joy. But, simply being with my guys, getting a taste of what makes them tick, and enjoying God’s creation—was what really made it too much fun.

Too Much Fun, Part 1

For almost a whole week, I have par-tayed with my sister here in my home town during our “stay-cation”. Baby Sister came for a visit while Ted was in Savannah, and we had too much fun. As in—no time to do laundry, clean the house or be concerned with anything except having some more fun. Truly, if it did not involve shopping, eating, movies, generally gallavanting, (did I say shopping?), we did not do it. One day we even got a massage! And did I mention the cupcakes we bought? (These are actually the very ones above.) Now I am going to associate having no responsibility with a visit from her.

We did have to arrange our self indulgence around N’s day camp schedule, which brought us under a semblance of control. We also stayed up late one night to greet A., who drove his manly self in from a music festival in Chicago. (His return was such a relief; that was a first for us, a 12+ hour driving trip.) Between N’s schedule and A’s work schedule, Baby Sister got to visit each nephew one on one and enjoyed that.

Baby Sister is exactly one year younger than I am. Yes, she was born on my first birthday and we always celebrated like twins. One year we even had a large sheet cake with a line drawn down the middle, separate colors and flavors on either side. Because that annual event is soon approaching, we took every opportunity to commemorate it. We gave each other the aforementioned massage “for your birthday”, we gave each other a lunch “for your birthday”, and there were also birthday shoes involved. A week long birthday is hard to recover from, but I’ll do my best.

Come baaaack, Baby Sister!

Current Event for Today

Going on right now in Nebraska is a very inspiring event – National Games for Special Olympics , USA. You can click here for up to date news on the Games. It is a treat and a thrill to go to the State Games; I cannot imagine what it must be like on the national level. What I can imagine is that the athletes are all having a ball right now! I happen to know one very talented girl who excels in aquatics. She is in Nebraska at the moment and has a throng of fans (count me!) following her many achievements. She was even invited to swim in the World Games in Shanghai a few years ago and did very well. I am so proud to know her!
You can also go here for some good history and facts on this fantastic organization.

The Special Olympics motto is "Let me win. But if I cannot win, let me be brave in the attempt." I would add that it seems that many athletes have also taken on the motto “let me enjoy this competition and all its social aspects to the fullest!” May we be brave in our attempts today and enjoy those around us!

All's Well That End(oscopy)s Well

After a routine checkup with the GI doc a few months ago, he said he needed to have a look around. As in, put N.,my Gift, under and stick a tube with a camera on it down his throat. Oh, I said. Yes, that was his “gut feeling”, and what was mine? (Since he did not seem the type to be into puns, I did not chuckle or point it out. Do all GI docs express “gut feelings”?) More evidence of our different senses of humor to follow.

Since the unexplained stomach pain that comes and goes has become less frequent, I was hoping this would not be necessary. The doctor was concerned, though, that some pain had become normal and acceptable to N. The doctor thought that N. was minimizing it, while it could be causing him some harm, plus, he would like to take a few biopsies. So I consented. Because there are so many doctors in the clinic, I figured that some may do the testing in the hospital, while some only do clinic visits. Also, because I have been surprised before, I asked this doctor as he was leaving if he would be the one to do the procedure. He burst out laughing and could barely get his words out. What he said before he left the room was, “Well, I sure don’t want YOU to do it!!” – and he was gone without waiting for my reply!

The stomach and reflux issues have been his areas of struggle since birth. Even so, I am grateful for the excellent medical treatment he has received all of his life. I remember when “failure to thrive” was circled on his sheet at the pediatric gastroenterologist’s office, and I felt like it said “failure to feed your baby, Mom”. We’ve come a long way since then; he routinely puts away massive, teenager amounts of food (and somehow this makes me feel better about my nurturing abilities). Thankfully, he has surpassed me in height and does not seem like he is failing to thrive at all! Whew. Thank God.

So, we are glad to have that procedure over and done with. More glad to have the biopsy report back and for the Dr. to call and tell me that “everything looks pretty good on the cellular level.” ? I had to have him repeat that, as in, ”NORMAL results, ma’am”. If the whole introductory phase of our conversation had not been so long, and if I had not broken out in a sweat when I heard his voice, and if my heart had not been beating so fast, I probably would have gotten it the first time. I guess these professionals have no way of knowing that we have a nagging until we hear from them, and when we do, we want them to get right to it and not beat around the bush for a few minutes! I was about to scream, JUST TELL ME, when he finally did. I guess you gathered that. : )

So now we keep a food diary to see if we can find what is plaguing him from time to time.
Meanwhile, it is my “gut feeling” that it is good it is over and that I was not the one to do the procedure.

What I've Been Shooting This Summer

I refuse to post the photo of the dishonorable deer who was lazing innocently in my back yard recently. I know she was the one who brutally attacked every caladium, impatiens and petunia that I had carefully planted! Clearly, I am still not over it.

Like a Good Neighbor . . . .

This girl is THERE! We have lived in our current home for 12 years, but I knew her before she moved into the neighborhood. Thankfully, in a small city like ours, those of us who have children with special needs tend to find each other FAST. This friend is a transplant from another state whose daughter is a little more than 4 years older than my son. She is one of the spunkiest advocates I have ever met. I was drawn like a magnet to this lady's energy and was amazed at her ability to take life on with such humor and determination. I can’t remember exactly where we met, because it seems like I’ve always known her. It was probably through coming and going at therapy when my son was a toddler.

I can’t say enough about what all she has taught me through the years. I truly cannot imagine where we would be without her relentless spirit that pushes me to “just try it; what’s the worst thing that could happen?”. Her innovative approach to life and parenting and her “out of the box”, outrageous thinking make me smile each time we talk. Once, in desperation and after many unprofitable discussions, (knowing she was right), she threatened a certain school district with chaining herself to the flagpole if they did not try something different for her daughter. Whoa!! And they knew she meant it! She is a kind –hearted, quick thinker who won’t take no for an answer. And she taught me a little about the latter. I needed it because, these days, school meetings can require more perseverance than a training Olympian. Without her coaching, I know that my child would not have had half the opportunities he has had, and I would still be a wimp. (Make that—more of a wimp.)

Happily, she has lived in my same neighborhood for about the last 10 years and our children SO enjoy one another’s company. It was this very woman who encouraged me to put N. (my son) on the swim team. The boy who was more–afraid-of-water-than-anyone-in-the-world –ever-has-been, yes. It mattered not to her that he wouldn’t go in over his knees at the pool without putting the death grip on one of his parent’s throats. He screamed until all eyes were upon us, then the guilty parent would return him to the shore. This went on for 9 long years. And it seemed to be getting worse, not better. I just wanted him to be safe if he ever fell in, and my friend said, “Just put him on the swim team.” Uh, . . . okay . . . .? That’s how she thinks.

Soon after this bodacious suggestion, he made a miraculous attempt to catch a ball in deeper water. He realized he still had all limbs intact, etc., so the self-inflicted, deep water ban was over. Yay! AND, he was put on the swim team. The rest seems so unbelievable—that he loves the water, works out, and has competed in Special Olympics and a few other meets! This sport has been great for him. We are amazed at his muscle tone, strength, and self confidence. Thanks to the Best Neighbor Anyone Could Ask For.

Who would have thought it?? . . . . SHE would.

Trinidad Revisited

Exactly one year ago today, my family of four was embarking on a new experience together—going to the island of Trinidad for a mission trip! (Trinidad and Tobago are little islands off the northeast coast of Venezuela, and they speak English there.) It was a trip that I hope none of us forgets, yet even just a year has made some of it a little blurry to my memory. (This is not unusual, as my sister routinely begs me to “PLEASE remember” some forgotten important marker from our past!) So, I determined to document it, even if a year later.

I pulled out the photograph album this morning and glanced through the numerous pictures we took. What a great opportunity for my boys and for us to leave our comforts of home and to serve others. It was a stepping out of the ol’ comfort zone, but the people were truly people we could embrace while we were being stretched. You cannot imagine their joy in the small things, their amazement that we would come, and their gratitude for a conversation! The exuberant church service we visited ended with a limbo contest, in which N. placed second! (He wanted to win so badly!) Hearing their steel pan drums and singing some of the same songs we sing at our church was a real treat. In this brief glimpse, I found the Trinidadians to be so genuine, joyful, and energetic.

Visits to orphanages, homes for the elderly, and hosting a sort of Bible school for older kids were our main objectives. One of the most unusual experiences we had was a visit to a youth prison. Most of the inmates were boys who were between my boys’ ages (14-18)! I was drawn to them, even though they were hesitant to speak in our small group at first. Some of our group gave a dramatic presentation that opened the door to talk about spiritual things, and a few of the boys told us about their hopes for the future and we were able to help answer questions about their hopes for eternity. One young man sticks in my mind who gratefully took a Bible from us; he was excited about reading and learning to live God’s way. Many of them were street kids who had stolen or kidnapped to get money to live on. We just cannot fathom being born into this . . . .

The organization (mostly run by one family) that our church is affiliated with does a wonderful job in Trinidad. You can read about some others’ experiences here http://www.ttum.org/testimonies/. I am so glad we went, and I can’t wait to talk to one member of our group who returned this year. She gets back next week.

The Birthday

Having a child with a disability that is discovered at birth is . . . . to have a conflicted birthday. That day is the day your whole world changed. That day is the day that you found out that the child you expected would never arrive. That day is the day you grieved your heart out. To be expected to celebrate on that day (especially only one, two, or three years later), brings out an odd assortment of emotions.

There is gratitude that your child survived whatever medical issues that the diagnosis brought with it. There is relief that you survived the emotional trauma of it all. There is joy in the child and the milestones that he labored many times harder than others to achieve. There is hope for the future. Then there is the reality that that is THE day that rocked your world.

Gradually, beautifully, mercifully, though, that day becomes a true celebration. As my son has entered his teens, it is the day he looks forward to most throughout the year. He begins this forward-looking the next day following the birthday (after we have wrung out every possible cause for indulgence). “Next year, for my birthday lunch . . . .”, he will begin. And I just laugh out loud.

We do milk those birthdays for all they are worth, and sometimes the milking is for me. I decide that we all have reason to celebrate—that the sting of sadness is gone, that God has given me a gift I could not have dreamed up to save my poor little life, and that rejoicing in another year with this precious guy is indeed a privilege. His outlook is beautiful and so worth imitating. Yes, it was a hard day (and then some!), and those tears are saved in a divine bottle. But now, the birthday has become an occasion to revel in the wonder of his growth . . . and mine. Now I say to the birthday – BRING IT!

More About Me

I am a person who likes to let my creative side explore and to try something new every now and then, hence this blog. My main responsibilities these days include running our household and looking after the needs of our younger son, whose name actually means “Gift from God”. Little did I know that he would be born with Down syndrome when we picked his name out 15 years ago. Turns out, he IS a gift, and I could not be prouder of him. Maybe his blog name will simply be “Gift” or just "N". This blog, I think, will be mainly dedicated to helping parents like me appreciate the wonder of our gifts and to enjoying life.

I also have another son who is at a nearby university. His name means “Strong and Manly”. Maybe I will call him “Manly” here. Or “Strong” or just "A". When he was small, someone warned me that those upon whom this name is bestowed are commonly strong-WILLED. I laughed, remembering her prediction, as I watched him grow into a negotiator extraordinaire. He is a creative guy, and he has an appreciation for music. He continually commands respect with his knowledge of all kinds of music trivia, no genre exempt. He is a true "audio file", and I am also very proud of him.

Their father, my sweet husband, is a fine role model for the boys. My sister’s nickname for him in high school was “Example” because my mother thought so much of him. (He and I actually met in the fourth grade! More on that later . . .) I thought about calling him Role Model or Example, but I believe I will just call him Ted. Fewer letters, but mostly to honor his Teddy Bear nature. (Never mind that his real name means “from the dark waters” !) He is as even tempered as they come and balances me well. All of my guys are gifts!

I love my friendships, I like hiking and being with my family anywhere. I enjoy cooking, reading, and photography. I am happiest when I am planning something or doing some sort of research (like Consumer Report--yes, I am a nerd!). I love to encourage other parents and to be encouraged. Our lives are full of joys and challenges; any time we can help one another along on this journey is satisfying to both. And I love to learn. I hope to hear from you and learn from you in the comments.