Tuesday, July 26, 2011

Faith's Adventure at Vacation Bible School

Last night after being around some very energetic kids doing activities nonstop for 2 1/2 hours, Faith's response to the whole experience was, "Well that was quite the adventure!"

Faith's friend, Chloe, invited Faith to go to Vacation Bible School (VBS) with her at Century Baptist, which is Chloe's family's home church. The theme this year was PandaMania "Where God is Wild about You!" Last night's lesson was based on "God made you."

Chloe and Faith
During the beginning, all the kids (and there were a lot of them) gathered together in the sanctuary to sing and dance and make a lot of noise. Faith was very nervous during this part and she was telling me she was scared. Both me and Chloe tried to console her the best we could but it was just too much for Faith. I took her outside to the lobby where she proceeded to tell me she wanted to go home. I talked her into staying as I knew we would be broken down into smaller, hopefully quieter, groups.

During the first session our "crew" watched a movie. Faith was fine with this but I couldn't get her to stop talking to one of the crew leaders during the movie. She kept asking what we were going to do next.

The next session was a Bible story where kids learned how God made the world in six days and what He created on each day. "In the beginning" of this session, it was pitch black, which caused Faith some stress. Next we were off to snack. One of the crew leaders was kind enough to scrounge up a straw so Faith could drink her water from a glass. I always forget to put one of her cups in her backpack when we go somewhere.

After snack we went to crafts where a lady helped Faith "dress" a little wooden girl. Faith seemed to like this part the best because it was more calm. Way calmer then the games we played outside that involved running around in a circle with a big bottle of water with holes in it. Faith got a little wet but she wasn't too concerned about it. I was more concerned about the wheels on her chair getting wet because we had to go through dirt to get back into the building.

After all five sessions were over, we went back into the sanctuary where Faith was a little nervous but she managed to hang in there listening to the music and watching the little stuffed pandas getting blasted out of a panda-blaster.

When it was all over, she (and I) were exhausted! Unfortunately since I didn't want to mess around with her feeding pump at the event, she still had one more feeding before she could go to bed. Needless to say, she pretty much fell asleep right away.

VBS runs all week long and I'm not sure if she'll make it back every night. I know she was nervous, apprehensive and a little anxious but does this mean I abandon these kinds of events and not let her take part?

She was excited about it all when she was telling Rob about everything that she did. I think she was having fun but her muscles wouldn't allow her to fully relax. This is the same issue we had with her during school programs. But we noticed during her last school program, she was way more relaxed and actually took part in the singing.  My thinking is the more we take her to events like VBS, she will get used to them and not be so anxious.

I must say I am grateful for the great people at Century Baptist. They knew ahead of time about Faith's special needs and they tried to help her be as comfortable as possible. The pastor came up to us about four different times making sure Faith was okay. The crew leaders were great in making sure that Faith was involved and participating with the other kids.

At times I just tried to hang back and not interfere with Faith's participation. I tried to just be there as someone to help get her around and make sure she wasn't getting overly stressed. Maybe one day during these kinds of events, I will even be able to leave her entirely in the hands of others. MAYBE!

Friday, July 22, 2011

Sarah Palin's Letter From God

I recently read a shocking article that the country of Denmark is well on it's way to making their country Down Syndrome-free. No, it's not with miraculous medical treatment, it's through aborting babies who are tested positive for the condition. Niels Uldbjerg, a gynaecological-obstetrician and researcher in medical ethics says the number of newborns with Down Syndrome approaching zero is a "fantastic achievement."

My question is where does this stop? Are they going to start aborting babies who have congenital heart defects? Spina Bifida? Cleft Palates?This eugenics way of thinking is sickening and disheartening which is I why I wanted to post something on the complete opposite end of the spectrum.

Following is a letter that Sarah Palin wrote to her family and friends a few days before her son, Trig was going to be born with Down Syndrome. Sarah Palin imagined the letter to be from God.
To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):

I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because I only want the best for you!

I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up.

Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!

Then, I put the idea in your hearts that his name should be 'Trig', because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!

Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift?

Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for.

At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!

I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that.

I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you... I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.

This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters.

The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect".

You will grow and be blessed with greater understanding that will he born along with Trig.Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did.

And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for - in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.

Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!

Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!

Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family.

Many people won't understand and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make 'em all shapes and sizes? Believe me, there is no "perfect"!)

Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.

I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts- for as the heavens are higher than the earth, my ways are higher than yours!"

I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!

Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!

Trig's Creator, Your Heavenly Father

Sunday, July 17, 2011

What a Weekend

It has been quite the weekend. It all started Friday when Faith had her last day of summer school. She had really struggled getting to school the last two weeks because of her cold that just wouldn't go away. She also wasn't sleeping well which made things even worse. She missed three days of school last week but she made it on the last day! And the best part was that she drove her power chair home from school! Her dad was especially impressed at how great she drives.

Normally, she has her seating system on a manual base and she switches over to her power base when she's in school. We are hoping to get her in her power chair more and more which will be easier for us when we get our van - for which our loan has been approved! If everything goes smoothly this week we will be getting our van by the coming weekend!

On Saturday we told Faith we were going on an adventure and drove two hours to a lake resort called Indian Hills where my whole family was camping. The point of the get-together was to have a belated 60th birthday party for my dad. Shortly after we got there, we gathered all eight of my parents' grandchildren for a photo.

Faith with her cousins: Samuel, Justine, Ashton, Kenzie, Sydnee, Donnie and Preston.

Unfortunately, it was very hot and we didn't know how long Faith was going to be able to handle the heat. Plus she was still getting over her cold so we really didn't want to push it. We had lunch, visited and headed back to our air-conditioned apartment where we stayed the rest of the day. Even though it was a short stay, it was fun to see everyone.

Grandpa, Faith and Rob hanging out in the shade

Today (Sunday) was another very hot, humid day and again we ventured out into the heat to go to one of Faith's best friend's birthday parties. We managed to keep Faith in the shade as much as possible and every now and then a nice breeze blew through.

I also kept her cool by spraying water on her which she liked. The rest of the girls had fun running through the sprinkler but Faith didn't want to get quite that wet. She had fun making a tie-dye shirt and painting her little pot and pet rock. After cake and ice cream, the festivities were moved indoors where it was nice and cool!

Faith enjoying the shade on a super hot day
Having fun with paint
We had a great weekend and although it will continue to be hot this week (hopefully not as humid), we will have a great week as it is now officially summer vacation for Faith.

Saturday, July 16, 2011

Five Ways to Cook Without Using an Oven

As a way to keep things cool during the hot summer months, there are ways I like to cook without using an oven. Five of these methods include grilling, using an electric skillet, microwaving, cooking with a convection oven and using a slow cooker. To read more click here.

Tuesday, July 12, 2011

Cardiology Fun - Stress Test and Pacemaker Check

Shortly after arriving home from my cardiology appointment yesterday, Faith asked, "So was everything A-OK at the doctor's mommy?"

Although I had been dreading the first part of my appointment - the stress test - everything really did turn out "A-OK."

Doing a stress test is not fun for many reasons. First you have to take off your shirt and bra and put on one of those flimsy hospital gowns. Then they have to hook you up to like a dozen electrodes. You have to try to keep everything intact as you push your heart to it's maximum limit. And in my case, while all of this was going on, a good-looking young guy who was an intern at Mayo was in the room. Thank goodness I had two wonderful nurses who helped to keep my gown closed and wires untangled while I was on the treadmill.

The first three minutes of the test weren't so bad but then they raised the incline and the treadmill sped up. Towards the end of the three minutes I started noticing my legs getting tired. Then after another three minutes they raised the incline again and sped it up. After a total of 8 minutes and 54 seconds, I was done and told them I had to stop - I felt short of breath and my stomach began to hurt.

The stomach ache has been a mystery symptom of mine for the last couple of years or so. It's like when my heart rate reaches it's max, my stomach begins to hurt. I especially notice this in hot, humid weather. My main reason for doing the stress test was to try to figure this out.

Following my stress test, I got my pacemaker checked and found out the battery has seven months left. That means sometime in the winter I'll be traveling to Mayo to get a new battery - possibly even a whole new pacemaker implanted.

Finally, I had my consult with my cardiologist. He said as far as my stress test went, I did pretty darn good considering I only have one single functioning ventricle. He went on to say that there are some people with two working ventricles that don't even make it three minutes.

I told him the the thing that bothered me was my stomach hurting because when that happens, I am forced to stop and rest and that I wish I could do more. He thinks the abdominal pain might have something to do with the fact that my pacemaker is set at a maximum of 140 beats per minute and once I reach that max, my pacemaker isn't  allowing my heart to work as hard as I need it to which limits the oxygen and blood flow.

After checking with the pacemaker guy at Mayo, he said I could try to have my pacemaker set to 160 beats per minutes which would allow my heart to work a little harder if it needed to. The disadvantage is that the higher my heart rate, the more prone it is to flutter and go into arrhythmia. Just to be safe, after getting my pacemaker reset, I'll get a holter monitor done which will show if my heart is having rhythm issues.

It's strange but even though I have had a heart condition all my life I don't think of myself as someone who has to have limitations. I've been told to not lift my daughter when she reaches 60 pounds but in my mind that limitation doesn't exist. I want to be able to do what I need to do to care for my daughter - which includes taking her on walks in her chair pushing her up and down our hilly neighborhood without my stomach hurting and forcing me to stop and rest.

After yesterday's appointment, I am feeling thankful about how well I'm doing - considering the complexity of my heart condition. I also truly believe that God has and continues to heal my heart. And even though I know I have to listen to my body, it doesn't stop me from believing that I can do all things through Christ who gives me strength.

Sunday, July 10, 2011

Barbecue Fun

Yesterday evening we went over to my brother and his wife's house for a barbecue. The weather was perfect, unlike today which has been filled with sporadic rain, thunder and lightning. We had a great time visiting and meeting some of those whom Todd and Barbara went to Argentina with on a missions trip. And I must say, even though I have never seen my brother cook before, he is a pro on the grill. The food was fantastic!

Todd grilling up some corn on the cob.
Nicole and Barbara
Sorry Chatzi - no food for you!
Faith and her new friend, Alex
Thanks for the food and fun!

Friday, July 1, 2011

Guest Post: Some Mothers Get Babies With Something More

By Lori Borgman - written May 12, 2002 recently posted on www.amazingamelia.blogspot.com

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.