making a difference - hydrocephalus

I firmly believe that everyone, EVERYONE can make a difference. It doesn't matter if you are poor, disabled, busy, tired, overworked, blah, blah, blah...everyone can make a difference. The key is finding something that you care deeply about and suddenly it is easy to see where and how you can really make a difference.

Earlier this week, on Monday, I received an email from my lil sister with a link to a newspaper article from her town (the town I grew up in). It was an article about a 31 year old lady who woke up on Jan. 11 of this year and her life was changed. She was nursing her then 8 month old daughter and suddenly she had an extreme headache. She went to the local hospital, where they misdiagnosed her and sent her home. Being persistent, she went to another hospital (in a neighboring town) and within 15 minutes of walking in the door, she was in the operating room having brain surgery. For some unknown reason, she was suddenly suffering from hydrocephalus.

She joined an organization called Stars Kids and set up the first annual Grand Haven Stars Kids walk-a-thon. When I learned of the walk on Monday, I immediately contacted this lady to see if it was too late to participate. It wasn't and so I began collecting sponsorship funds and arrived this morning eager to walk. I will go into details later about the walk, but wanted to spend a moment educating you about what hydrocephalus is and how it impacts people.

Most of you have probably never heard of hydrocephalus. I know that before my 20 week ultrasound, when I was preggo with Lil Bug, I had never heard of it either.

Approximately 1 in 500 persons are afflicted with hydrocephalus either from birth (e.g., brain hemorrhage, spina bifida) or acquired causes (e.g., tumor, cyst, meningitis, traumatic brian injury). The term "hydro" is Greek for water and "cephalus" means head. It is also referred to as "water on the brain."

People with hydrocephalus have abnormal accumulation of celebrospinal fluid (CSF)in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.

Usually, hydrocephalus need not cause any intellectual impairment if recognized and properly treated. Shunts are the preferred treatment for hydrocephalus but they malfunction, break, can become blocked and cause infection. Shunts have a 60% failure rate within the first year. Many people with shunts undergo multiple neurosurgeries to correct shunt failures. Complications may include developmental delays, brain damage, stroke or even death. All complications impact the families of shunted children and adults.

Now that you see the importance of shunts, you may be suprised to learn that no federal monies are set aside to promote research and advancements with shunts. For the thousands of children and adults live with a shunt, there is constant concern and worry as the statistics show that failure of that shunt is likely. Each time a shunt breaks, becomes infected or blocked, it needs to be fixed. Each surgical repair or replacement is called a revision. A revision sounds like "a walk in the park." However, each and every revision is a major neurosurgery and a new traumatic brain injury.

The nonprofit organization "Stars" Kids was established to help raise awareness and monies to privately fund research and to promote advancements in shunt functionality so that those affected by shunts will have a longer and better quality of life. The founder and president of the organization has a 26 year old son who has a shunt. He has had about 100 revisions (yes, you read that correctly) in the past 10 years...do the math and that means that nearly once a month he is having brain surgery. What kind of a life is that? She was frustrated with having to settle on the current shunt and so about 7 years ago she established this organization.

So, this morning I arrived in time to register and turn in the money I had collected. My dad met me there to be my walking buddy. It was cold (low 50's), extremely windy and raining on and off. We walked along a boardwalk and down the pier as massive waves crashed along the pier and sprayed freezing cold water on us. IT. WAS. WORTH. IT. Lil Bug was supposed to walk with me, but she has come down with a cold, so she met me at the end and met some other children with shunts. It was a nice event and the turnout was great for being the first year in that small town.

I look forward to being more than a participant next year and actually stepping up to help prepare for this event. It is something that has already impacted our lives very deeply and personally (Lil Bug had a shunt placed when she was 4 days old and had her first revision this past January-when she was just over 2 years old).

I am only one person, but I did collect a large amount of money and I know that money will be going to something that is very near and dear to me...researching to make a better functioning shunt.

sorta, kinda back

Well, my laptop is back, but it wasn't fixed...long story! Anyway, I had to reformat it, which means that now I have to take time to reinstall EVERYTHING and I don't have the time, nor the desire to sit and do that, so I am still using the old dinosaur in the basement primarily.

It has actually been kind of pleasant having my computer out of commission. I haven't spent nearly the amount of time I normally would on it, which means that my house is cleaner, my kids have had more undivided attention and I have been able to catch up on some television, amongst other things.

I briefly checked my Google Reader yesterday and it said I had something like 150 blog posts to catch up on from the two weeks it has been down. YIKES! Doubtful I will catch up with that, but rather, I will probably just "mark as read" and start fresh for most of them. I hate to do that because inevitably, something terrific will be written in someones blog and I will miss it, but that is the risk I think I must take at this time.

So, I guess all of that to say..."I'm back" but not really fully. Hope you all are doing well!

bye-bye

Bye-bye for now. I'm sad to say that my laptop was brought in for some fixin' and will be gone for 7-10 days (I'm sure hoping they were being conservative!). That means I have to rely on "old faithful," the dinosaur in the basement and that probably won't happen much, so most likely I will be absent for a while until my darling laptop comes home.

See you soon.

What have I gotten myself into?

I have been longing to get back into a womens Bible study for a while, but in case you haven't noticed, things have been crazy. Well, I decided to take a step in the right direction and sign up for the new study our church started this week.

All I knew about the study was that it was a Beth Moore study. I have never done one of her studies before, but I have heard fantastic things about her and was looking very forward to what I would get from it.

So, last night was the first meeting. It is only 4 weeks long and we are meeting every other week. I walked into a room full of women I don't know very well. Yes, we have been going to our church since January, but we haven't joined any small groups or anything yet, with summer being so busy and such. So, I sit down at the first table I see with a vaguely familiar face.

We did brief introductions and then started the video. As I listend to the first 30 minutes, I really enjoyed everything Beth was saying. She is a great presenter. She has an awesome sense of humor. Then, suddenly I found myself getting very real. Suddenly I felt the Spirit's presence and I knew that I have work in myself to do. At this point I begin to think, "What have I gotten myself into?"

The study is "Love Well." Have you done it before? If you have, you know what I am talking about. If not, here are a few key things I took away from last night.

* God measures our spiritual maturity by how we love. (1 John 4:7-21)

* We must know God loves us before we can show love to others to His fullest intent.

* Loving others will always involve risk because they can hurt us.

* There are 4 types of people to love:
- JOY: These are the people that are easy to love.
- Testy: These are the people that drive you crazy to love. They are difficult to love. They crawl under your skin when you are around them too much.
- Foe: We are called to love our enemies. Think, "who do I hate?" You can only hate someone who has been close enough to hurt you.
- Far: These are the strangers in our lives. The lady in line next to us at the grocery store. The person whose car broke down in front of your house.

There are also 4 confessions of affection that she discusses.
- God is perfect love.
- Nothing can seperate me from Gods perfect love.
- God pours his perfect love into my imperfect heart.
- Accessed, I can love anyone through anything

So, it seems all harmless, right?

WRONG!

There is someone in my life that I consider a foe. Someone that I hate. I am not a hateful person, but there is one, just one, that I can say was close enough to hurt me so much and I do hate him. So, I know that God will be working on me during the next three studies and I am not sure I am ready to be worked on. I feel called to the study and resistent at the same time. Should be fun, huh?

I'll take a side order of sleep, please!

Ok, I knew going into this that sleep would be evasive, at best, but come on! I could use some real sleep for more than 2-3 hours at a time...really!

Lil Princess teased us. She had about a week of time where she was going down at about 10:30 at night and not getting up until 3:30 or 4:00...that is a decent amount of sleep at one time. I'll take it! Well, apparently she has something else in mind these past few nights. She has been up every 2-3 hours again. One would think that maybe she is going through a growth spurt and so she wakes to eat, but NO! She isn't really eating even. She just wakes up and wants to snuggle. I am all for snuggling, but not at 1, 3, 5 in the night!

I know I was lucky, but Lil Bug was sleeping through the night when she was 8 weeks old. Guess what? Lil Princess was 8 weeks on Monday and there is no sign in sight that she intends to sleep through the night anytime soon. Different children, different sleep habits. This, I know! But a girl can hold out hope, can't she?

I will survive. Sleep isn't all it is cracked up to be anyway. I mean...I am much more productive when I am up 18-20 hours a day. So, I will not complain...but, should Lil Princess ever find it in her to sleep a whole night though, I will find myself very much appreciative of her efforts. :)

It is official

Lil Bug loves (I mean LOVES) preschool. Since her 3rd day of school she has not batted back one tear. She barely has time to give me a kiss when I drop her off. She is so excited to see her friends and even more excited to see her teacher, Ms. Panse.

*sigh*

I, on the other hand, am not quite over it! :)

Isn't she lovely?

My Lil Bug was the most beautiful Flowergirl on Saturday!!!

The Designer's cousin was married on Saturday. She decided on an October wedding because she wanted an outdoor wedding in the cool, brisk air with beautiful leaves changing in the background. Well, the wedding was nice, but it definitely wasn't cool or brisk and there were very few leaves changing color where we were at. It was a record breaking day for heat...in fact, it hit 90 degrees...IN OCTOBER! That is just unheard of, but it happened.

Ok, back on track. C (The Designers cousin) asked Lil Bug to be the flowergirl a while ago. At the time, Lil Bug was generally an obedient child. In the past 6 months a lot has changed. Lil Bug is still a good girl, but she has a definite attitude sometimes and she has a voice that she believes all should hear. So, as the date neared, I worried about whether or not Lil Bug would actually execute her role in a nice, well-behaved manner. Fortunately, all went well...no, wait...all went GREAT!

My Lil Bug was so cute! She felt like a princess and looked like one too. It was wonderful to see her. Here are a few pics from the busy day. Hope you enjoy seeing her beautiful smile and cute hairdo as much as I did!