Happy New Year 2010!

It is now Sat., Jan. 2, 2010 and a chilly, sunny day outside in Florida. Our long Christmas break is coming to an end and my January calendar is looking typically hectic. I'm looking forward to getting back to our routine of homeschool, activities and piano lessons, but the break was refreshing. All signs of Christmas have been packed away into the attic.

I don't know how it happened, but this was the least stressful December I remember. I think we did all the usual activities, but somehow I was relaxed throughout. It must have something to do with Conrad's new retirement and having time to help me shop, cook and decorate. Last Christmas I hurt my back and could hardly move, and this year I hurt it again (probably moving the furniture), but thankfully it wasn't too bad and I quickly recovered.

In December we went to Cracker Christmas, which is an outdoor craft festival and frontier demonstrations including making sugar syrup from sugar cane (Jacob always gets some sugar cane to eat), broom making, blacksmiths, basket weaving, rope making, spinning, quilting, lace making and wood carving. Conrad and Jacob love getting the homemade ice cream, and I look forward to the kettle corn. Conrad bought plenty this year to bring home and share. I had a birthday party at my parents'. Jacob had his band concert. He played the trumpet. His band played in Washington, D.C. for Christmas, but we didn't go. The older boys went to western N. Carolina to camp, and everyone up north--band and boys--got snowed in. It was quite exciting even from here, and I wish I had gone with the band and gotten snowed in too. My mom had Thanksgiving at her house and did all the cooking, but her allergy/lung/cough situation was bad then, and even worse by Christmas. She finally said she couldn't have it at her house, even if we brought all the food. Brandon said he was going to "kidnap" Grandma and Papa, and he did, so we had Christmas at our house. I liked it. Conrad and I had fun planning a menu and cooking. It was a good Christmas.

The Calm Before the Storm

It is November already! It's cooler even here in Florida, at last. I feel the holidays upon us.

We have been busy with Conrad's kidney stone business, going to Atlanta for a wedding, Brandon's birthday, Conrad's retirement party and Brent's violin recital.

We are having a piano recital this afternoon. It was not easy to find a time that most people could make it! I had to cancel our spring recital, because the majority couldn't come. It's a good thing we reserved this day well in advance, because other things have crowded into this day! I am looking forward to it. The kids' nervousness rubs off on me, and I hate getting up front and speaking, but it's worth it to all get together and play a little music for each other.

After the recital is over, we are planning my dad and Brent's birthdays. The party will be at my parent's house as usual, so my mom is anxious to get the details settled.

Conrad is having his kidney stent removed Monday, and hopefully he will bounce back to his normal self. He's been miserable, so we haven't gone out much lately. Thankfully, he's retired now, and is able to recover at home.

Thanksgiving will be upon us soon. I love spending time with all my family! December is a crazy month for everyone. All of Jacob's programs have something special for Christmas. His band is going to play in Washington, D.C. We might go. I have a birthday (even though I don't want to get any older) and am looking forward to the Cracker Christmas festival in Ft. Christmas.

As far as homeschooling, it's been very different since Conrad retired and I've been driving him to the hospital and doctor's offices. We haven't found a routine yet, but I know we will.

13 Years and Counting...

Con and I had our 13th wedding anniversary on July 14. I was nostalgic all day, remembering our wedding. How everything has changed since then, especially the kids! Baby-faced Brent was a small 6 year old, and was our "flower boy", Brandon, 9 years, and our "Bible boy", and Juddy and Josh, 12 and 13, were Conrad's Best Men. My sister was my matron of honor, and she put a huge white bow on the front of Dad's scooter, and he accompanied me up the aisle. All the guys matched in black suits with dark green ties. I wore my mom's wedding dress that my sister Margy had tea stained and embellished all over with tiny, pearl-like beads. Margy also curled and put up my long hair.

We were married in the Titusville church I grew up in. I was so touched that many of my friends drove 2 hours to be at my wedding. My brother-in-law, who is director of Food Services at the hospital, provided food and all the related dishes, so the food was amazing (I was too busy and stressed to actually eat). My sister, who is a brilliant decorator, made my gorgeous cake. I just wanted a help-yourself buffet, but my family wanted to be involved, so they served the guests. It was a nice touch. My mom and Con's mom made potato salad together, and we bought local famous hot wings. The Titusville pastor, James Rodrigues, married us, and his talented wife, Bonnie, played the keyboard...for a long time, since Con forgot his suit and had to run back home to get it! We spent our wedding night at a place Conrad arranged for, The Inn at Cocoa Beach. It was such a beautiful bed-and-breakfast that we went back there for two of our anniversaries.

It was ironic that when I moved over here a few months later from Zephyrhills, the Titusville pastor who married us moved to Zephyrhills to become their new pastor. It's also ironic that Con and I are now members of the church we were married in. Funny how life turns out.

My mind also ran over other notable anniversaries. We had one that still makes me laugh. We spent our anniversary working on the yard, and were so tired, hot and sweaty that at the end of the day that we didn't even feel like driving as far as Merritt Island to find a restaurant for our date. Conrad had eaten at a place in Titusville that he thought I'd love, so we got cleaned up and went up there, but it was closed. I think it was only opened for lunch during the week. So we spent the next hour driving around and around Titusville, and we finally ended up at a Perkins (or something like that). It wasn't the special place with special food that we were looking for, but I remember the food was actually good, and although it wasn't a romantic atmosphere, it was really wonderful just being alone on a date with my husband whom I love so deeply.

What is Charcot-Marie-Tooth?

I was born with a disease. It is not contagious, but it is inherited. It slowly causes your body to become paralyzed, because your muscles die. Two of my favorite things, running and playing the piano, are very hard for me now. It sounds like a muscle condition, doesn't it? It's not. It's actually a nerve condition. The nerves stop working right, and they don't stimulate the muscles to work, so the muscles atrophy. It's pretty hard to take, because you can do everything, then suddenly you can't. I remember trying to show off my awesome dive to my son, and I couldn't jump on the diving board anymore. When things like that happen (which is often), I privately grieve a little.

This disease is called CMT. I inherited it from my dad, who inherited it from his mom, and then the trail goes cold. Dad and I were studied by researchers at the National Institutes of Health in Bethesda, MD when we lived in Virginia. We shared a hospital room and I had my 11th birthday there. It was the Christmas season, and NIH had a great children's program. I did crafts, watched plays, and they let me fly up and down the halls in a wheelchair. I had a great time, aside from the slicing, poking and prodding with sharp needles. We were lab rats.

Here's what NIH knows about CMT:
Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder and is found world-wide in all races and ethnic groups. Discovered in 1886 by three physicians, Jean-Martin-Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people.

CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some loss of sensory nerve function.

CMT is one of the 40 diseases covered by the MDA, but unlike muscular dystrophy, in which the defect is in the muscles, CMT is a disorder in which the defect is in the nerves that control the muscles.

CMT usually isn’t life-threatening and almost never affects brain function. It is not contagious, but it is hereditary and can be passed down from one generation to the next.

CMT
* ...is also known as peroneal muscular atrophy (PMA) and hereditary motor sensory neuropathy (HMSN).
* ...is slowly progressive, causing deterioration of peripheral nerves which control sensory information and muscle function of the foot/lower leg and hand/forearm.
* ...causes degeneration of peroneal muscles (located on the front of the leg below the knees).
* ...causes foot-drop walking gait, foot bone abnormalities, high arches and hammertoes, problems with balance, problems with hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the spine) and sometimes, breathing difficulties.
* ...does not affect life expectancy, but can, in rare instances, cause severe disability.
* ...has no cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.
* ...is sometimes surgically treated.
* ...is usually inherited in an autosomal dominant pattern, which means if one parent has CMT there is a 50/50 chance of each child inheriting the disorder.
* ...may become worse if certain neurotoxic drugs are taken.
* ...can vary greatly in severity, even within the same family.
* ...can now be diagnosed by a blood test (NOT OUR TYPE) (CMT types: 1A, 1B, 1C, 1D, 1E, 1F, 1X, 2A, 2B, 2E, 2F, 2I, 2J, 2K, 4A, 4C, 4E, 4F, 4J, HNPP, CHN, and DSN).

Ahh, Summer!

Our 19 year old, Brent, got A’s at Brevard Community College this semester! I’m so proud of him, and grateful to his tutors, Laurie Erskin, in calculus and my dad, in chemistry. He still needs a job, but we haven’t found a place that is hiring. Brent is continuing violin. I wish someone would talk him into playing at our church, but so far, he is too shy.

Jacob’s Tuesday school classes ended with a drama program and art exhibition. The band performed a finale concert. Our homeschool group had a yearbook party. Suddenly, our Mondays, Tuesdays and Fridays were free!

We are still homeschooling math, trumpet, guitar, piano, math, reading and Bible, but there is a totally different feel than during the school year. There is no clock-watching and rushing out the door. We are finishing the last few chapters of Jacob’s math book so that when school starts in August, we can try algebra. Jacob reads daily from whatever book he chooses. He is working on a kids Bible program that is a lot of fun. He is participating in summer band, so practices his trumpet before a performance. They are performing for children’s groups at libraries and nursing homes. His band teacher is so amazing at engaging the audience, young or old, and makes it fun for the children in band by having a pool party at her house afterwards. I’m able to spend a lot of relaxed time with Jacob and piano, and his playing has improved dramatically. He has been working on his Guild Repertoire lesson book (which is all classics). I’m excited because he just finished learning (and memorizing) an entire sonatina that I played when I was his age. That’s so cool! His fingers are much quicker than mine. He’s also working on some simple jazz and blues, and a religious piece. He played at church recently. Jacob loves to play fast and loud, but he forced himself to slow down and play softly, which was a huge accomplishment and showed a new maturity. I was proud of him! He hasn’t been playing much guitar, because Conrad hasn’t given him any lessons lately. He moves forward quickly when Conrad teaches him.

The beginning of June, Brevard Community College started a variety of kids’ camps. Brent went to a few when he was in middle school, and they were wonderful. Jacob is finally old enough for some of the camps. Thank goodness my friend told me about them! He participated in a week-long Production Camp, probably the best camp he’s ever attended. The kids learned all about “green screens”, writing and filming a commercial, and creating and performing a talk show. They broke into several groups, and they were all funny and unique at the live showing.

This week, Jacob is at Camp Kulaqua. Our older four boys went every summer when they were younger, so ever since Jacob turned 8 and was old enough to go, I’ve been asking Conrad to agree to send him. He was afraid Jacob would be influenced by some trouble-maker and come back a changed child. Finally, this year, he thought we should send him. I’m so happy for Jacob! We’re able to look at photos online and see what they’re doing.

My usual summer activity is to clean out! I have outgrown books, toys and clothes. I’ve made a lot of progress, but there’s still plenty to do. I can’t even think of the stuff on the porch, in the garage or in the attic. I’m concentrating on the house. I’ve been working on Jacob’s room, a little at a time. I’ve been selling and giving away, and still have a huge pile of stuff to deal with.

I’m still teaching piano over the summer. I really love to teach in the summer, because everyone is so relaxed and has more energy for concentrating on piano.

Our church is having VBS this week. I led VBS for 3 years when my kids were little, so I really sympathize with our leader who has two little toddlers. Kudos to her! It’s a big job, but she’s handling it much better than I did. This year I’m doing my usual, taking my group of little ones from area to area. It’s not much, but I love being involved and being with the kids. Conrad is helping with the games. I’m sorry Jacob and the NINE other kids that I counted at camp from Titusville and Cocoa churches had to miss it, but Cocoa is having a Romans VBS next week that they can attend. It will fit right into the ancient history that we’ll be studying in the fall.

I worry about Conrad and his health. His diabetes is not good. He needs to really watch his diet, and that’s hard for him. I am so blessed to have such an interesting, fun and compassionate husband, that I dread anything happening to him. We’ve been together over 15 years, but he still makes my heart skip a beat when I look at him. I love just being with him, talking with him, holding his hand, cuddling with him. I’m glad he’s retiring soon. We have a big transition in our lives in October! We are excited and nervous.

End of School

The end is in sight. We're in a flurry of activity as school is ending in about three weeks. I am wrapping up this school year with finishing Jacob's portfolio and evaluation; last drama and art show; last band concert; and making a yearbook page for our annual Homeschool Exchange yearbook, which will culminate with a party.

I'm wrapping up our home homeschool classes too--reviewing math, to make sure he remembers everything he's learned thus far and tying up American history. We just started Jacob's grammar and writing books, and they will be continued next August when we start 6th grade.

I'm ready for next school year. Conrad is excited about teaching science, which is one of his many passions. I'm excited about delving into ancient civilizations--Chinese, Egyptians, Greek, Roman-- and if we have time, moving into medieval times, and studying King Arthur and the Knights of the Roundtable. We've hardly been to the library this year, and I plan on depending on it heavily for history next year. I also have found some pretty amazing websites, with terrific pictures, games and projects. I can't wait to get started.

As far as summer plans, we've signed Jacob up for a couple of camps. He's going away to our Adventist camp for the first time. We used to send our older four boys every year, and Brent was the only one who didn't like it. I think Jacob will love it. He's going with a friend, which makes me feel a lot better. I also signed him up for an archaeology camp with a friend, that is hosted by our local college. I'm still looking at other camps (cooking, drama, surf), but that's a start.

Jacob is definitely growing up. Like an echo of his brothers before him, he asked me not to sign him up for camps without talking to him first. There was a time that he was up for everything, and now he's getting pickier.

Birth Day Memories

On my first child's first birthday, memories of his arrival into this world flooded me. My mom never told me that her children's birthdays meant it was a special memory-day for her!

Today, our youngest son is 11 years old. I started remembering the birth journey yesterday, Easter Sunday, because 11 years ago on a Sunday, I was in bed with the flu and having intermittent labor, praying that I wouldn't have him until I was better. My sister stayed with us to help take care of the older four boys, and she cleaned my house from top to bottom. What a blessing!

Conrad came with me to my doctor's appointment on Monday. They did a non-stress test and sent me on my way. I told the doctor that I was in labor and I wanted him to examine me, but he refused. I told him I thought I was in labor. He told me that I was not in labor, but was experiencing Braxton Hicks. I told him that this was my third baby, and I knew the difference between Braxton Hicks and actual labor. He continued to argue with me, and told me that Braxton Hicks with a third baby are painful. But he saw that I refused to leave without an exam, and gave in. When he examined me, his eyes opened wide and he ran out and snapped orders to call the hospital and tell them to expect us. I was dilated to five. I just said, "Thank you," and we left.

My first baby was born in a hospital, so I knew what to expect--immediate IV's, no food or water until after the birth, and no more say in anything. I hated it. My second baby was born in a birthing center, and it was a beautiful, awesome experience, but although my pregnancy started there with Jacob, I had to move to a hospital because he was considered High Risk. Hoping to have Patient's Rights respected, I made a list of what I wanted/didn't want, and previously gave it to the hospital and doctor's office. The doctor that I gave it to laughed and called it my "Wish List". I think he thought it was cute. With this in mind, after we left the doctor's office, I asked Conrad to take me to the grocery store so I could have a last meal, since it was after lunchtime and I didn't know when I would eat again. I got a most luscious fresh mixed fruit bowl. I savored it in the car as we continued to the hospital.

Boy, were they upset when we walked through the door! They yelled at us that they expected us a "long time ago!" I thought, "Here we go, I'm no longer a person." They put in an IV to hydrate me and an antibiotic for the Beta Strep that I needed to receive for four hours before the birth, for the baby's safety.

The doctor who came in and checked me decided to break my water, since I was just "poking along". I said, "I wouldn't do that, because I'm supposed to get the IV antibiotic for four hours before he's born, and if you break my water, he'll be born right away. That's what happened with my previous births." He disagreed with me and said, "This baby won't be born right away!" and broke my water.

Then everyone left us alone. I told Conrad, "I'd better go to the bathroom one last time before he's born," so he helped me there. Sitting on the commode felt so good that I just wanted to stay there, but when I suddenly felt like pushing, I panicked and called Conrad to help me back to bed. The baby was coming.

Conrad ran out to get a nurse, and she was very rude and angry that her pizza lunch was disturbed. She said, "She's not having that baby already!" However, when she checked me, she yelled at someone to call the doctor, who came pretty quickly. He was surprised, but calm. I told Conrad to call my mom, who wanted to be at the birth, but I sadly knew she'd never make it. I glared at some male paramedics-in-training who came to watch, and I was so relieved when they respectfully left.

The baby was born right away. Absolutely the easiest birth of the three. Because I was sick and had a fever, he also had a fever, but they told me that after he was born it was quickly dropping down to normal. He also didn't get the four hours of antibiotic, so they had to take him to the neonatal unit (nicu) to continue antibiotics until they got test results back, which would be three days. I begged them to let me see him before they took him, and when they all left the room for a minute, a sympathetic student nurse brought him to me. I held Jacob for the first time, and instantly bonded. Then the pizza nurse came in and yelled at me for endangering my baby with my flu, and rushed him away. They didn't let me hold him again for 24 hours. I was glad that his brothers, grandparents and father were there to cuddle him as I watched through the glass.

Eventually the hospital did a 180 and let me scrub, put on a gown and mask, and go in to him. For the first time since that brief bonding, I was able to hold him. Initially I wasn't allowed to breastfeed, but another day later when the breastfeeding team came along, they reversed that opinion too, and in fact encouraged it, and were upset with me that I hadn't been breastfeeding him all along.

I was upset when the doctor that came to perform Jacob's circumcision was the same one from my Monday appointment. Conrad and I had read an article about babies and pain, and the article suggested using a simple topical numbing ointment before performing a circumcision. It certainly seemed like a small request on our part. He absolutely refused, and circumcised Jacob as he did all baby boys, without any regard to the pain he inflicted upon him. My poor baby. He had IV's and monitors all over him, and this heartless man could not put a simple ointment on him. Conrad and I are still so disgusted with ourselves for allowing it.

Thankfully, I was an experienced mom, otherwise it all would have been much more overwhelming and upsetting than it was. Instead, I saw that Jacob got plenty of love from others, and I patiently bided my time. I knew he would be mine in a matter of time. All the wonderful IV fluids had helped flush the flu from my system, and I was feeling much better. Jacob was born at 5:00 p.m. Monday, and was discharged by 9:00 Thursday evening. From that moment, I could feel freedom. He was my baby for the first time. I was a free person with choices again. Life with our baby boy has been absolutely wonderful. What a blessing the last 11 years have been!