Mama Made New Shoes

With Samantha's orthopedic braces (DAFOS), she has to wear shoes. To do so, we had to buy a size 6! Ridiculous. I recently went to DI and found some sandals. Because the DAFOS make everything a bit thicker, I couldn't strap the velcro across. So, being the wise and talented mother that I am, I bought some pink velcro and sewed it on. I think these will work much better!

Before





Now

Foundation for Children with Microcephaly

As a part of my desire to learn more about microcephaly, I have engaged myself in a new project. A couple months ago, Marcus's Aunt Arlene sent me an email with a website about a darling little girl with microcephaly. I looked through the photographs and read her story online. I then found a link to Foundation for Children with Microcephaly (FCM). FCM was started by this little girl's mother, Jenni, who wanted to create a support group of sorts for families coping and dealing with all the struggles that involve microcephaly. I was so excited to find this site. Jenni wants to hold the first annual convention for FCM in June 2008 where specialists, doctors, geneticists, etc will be there to speak with us about the condition, research, and resources. I immediately made a plan to attend.

I emailed Jenni right away and told her of my desire to get involved. I feel like this convention is so important to the microcephalic community, as distant as we all are from each other, and told her that I wanted to start writing letters to companies to try to raise money for it. She, of course, was thrilled that I wanted to do that. But, I wanted to do more. So, officially, as of Tuesday, I am the Utah State Representative for FCM. This means I am the contact person for anybody who lives in UT and needs help. I can make home and hospital visits if needed/requested. I help families know about services available to them. I contact pediatricians, neurologists, and specialists throughout the state to let them know of the foundation so if they have a patient with microcephaly, they can refer them to us. I also am responsible for fundraising. It's a great support system for these families. When we found out about Samantha, I would have loved to have a specific person I could contact to ask questions about what it's like to live with this, what to expect, etc. I'm so so very excited to be a part of this.

There is a link to the website on our blog. My email address hasn't been posted yet, but should be soon. BUT, Samantha's picture is on the website. Go to the website and you should see her on the page. You won't miss her!

I am just really grateful for the opportunity to be a part of this and help other families. I can't wait to get my first email, whenever that may be. In the meantime, I'm busy going to doctors' offices and writing letters.

If you are interested in donating to FCM, let me know and I can help you arrange that. FCM is a recognized charity, so it is tax deductible.

Hmmm...a Bit Strange

As many, if not all, of you know, I taught high school English for 2 years. I decided to give up teaching, salary, and benefits in order to stay home with Samantha. Though I love being home with her, I would like to still use the training that I have to bring in a little extra money. So, I decided to tutor. I've gone to the schools and talked with teachers and the counselors, but I also posted my information on craigslist. I love craigslist. (Sidenote: I have made a few hundred dollars selling things on craigslist! It's great.)

The next day, I received an email from a man (whose name is Marcus) who said his son would be in UT for the month of October. He is from London and his email was in broken English. He wanted to make sure his son, while "vacationing," still stayed on track. Marcus, not my husband but the father I received the email from, told me that his son, Peter, had a guardian out here and that guardian would drive Peter to my home everyday for one hour. Wow! I was pretty excited. So I emailed him back and told him that that would be great. I told him how much I charged per hour, etc.

The next day I received another email in which he wanted to arrange the payment. He wanted to pay it all at once and he was going to wire it to me. In order to do that, he would need my full name and address. The plan, though, was that he was going to send me a lot of money, and the extra money was to be given to the guardian to pay for his son's other expenses. Hmmm Why would he send me all the money and not the guardian? It seemed a little strange. Plus, I had had questions about the tutoring arrangement that he hadn't answered. I emailed Marcus back and politely told him that I would prefer he send all the money to the guardian and the guardian could give me my share of the money -- thus, I didn't have to send my address. (I was never planning on meeting this boy at my apartment. We were going to meet at Provo Library.) I haven't heard from him since.

On Sunday Marcus, my husband, and I were talking about this situation, and it occurred to me how I seriously could have just dodged a HUGE bullet! How scary. What if we had to deal with identity theft? Or even worse, my neighbor pointed out to me, what if he was some weirdo and just wanted my address and was going to come over here!? That just creeps me out.

I share this on our blog because I think it's important. It was a very innocent thing. This man had a son and wanted me to tutor him. But there was something that said, "This doesn't seem right." I'm grateful that I listened to that. A lot of times we say that we learn from our mistakes. I agree with that. There are times, however, when we don't have to make a mistake to learn a lesson. In this case, I'm glad that I didn't have to learn from an experience gone wrong, and that I could learn simply by making the right choice.

Goodbye

Though Mom and Dad have been taking care of you while I've been away in UT, you will still always be my 'lil pup. I love you.

Spinner
1992 - 2007

Good News for Sammy

Monday was a hard day for both me and Marcus. Even though I felt peaceful about Samantha's situation, I was very emotional all day. I felt like things would work out, but was really emotional every time I thought about her. That night, when I went to bed, I had a hard time unwinding from the day. I took out Samantha's scrapbook, looked at all the pictures, read her life story that I had documented, and read her baby blessing, followed by her great grandpa's blessing. After all of that, I felt so confident that she would be ok. It was as if someone said, "Tomorrow you will wake up." And, because it's such an obvious statement, I would say "Well, of course I will." It was that same feeling. "Samantha will be fine." "Of course she will be." After so many days of worry, concern, and too much emotional outlet, I felt a very strong confidence that all would be fine.

The next day we had a doctor appointment with Dr. Siddiqi (plastic surgeon) and Dr. Walker (neurosurgeon). This was a routine after surgery check up. Dr. Siddiqi said that because her brain hasn't grown at all, her skull has fallen back to where it was previously. As a part of the surgery, he had pushed her skull out a little to create room. Her brain has not filled up that space, and so the skull has gone back to where it used to be. This isn't great, but if her brain does begin to grow, then her skull will grow back out again.

We then met with Dr. Walker. I asked him about Samantha and her brain not growing. He gave me some very encouraging words. I've told this so many times, I think I remember those key phrases he used...He said:

Generally microcephalics have a shorter life span or comprised quality of life because there are other issues. (troubles eating, moving, etc) Samantha doesn't have any other issue, besides the seizures. This could be a problem if she goes status (goes into a seizure and never comes out of it) or if she aspirates while seizing. These could all be problems, but they are uncommon. Samantha doesn't fit the peg-hole of a typical microcephalic. They are usually severely mentally retarded, and Samantha isn't retarded -- she's delayed, but not retarded. She is healthy, interactive -- certainly doing much more than anyone ever expected. She is amazing. Head size doesn't determine life expectancy, it's the other issues involved. She really is amazing.

With that said, I believe it's the seizure problem that Annie was concerned about. But, I really do feel like we'll get that under control somehow, sometime. Those words brought so much peace, and it reconfirmed the feelings I had had the night before. I walked out of that doctor office feeling like my child was the smartest, brightest, most interactive, and amazing child in the world! I know that technically that's not true, but in my world she sure is. Thank you so much for your continual prayers and support. We know that there will still be ups and downs, but for now, we can all enjoy this up.

The Greener Side of the Fence

I have had the opportunity to think a lot the past few days. Two weeks ago, while laying in bed, I thought about all our problems, concerns, worries, etc. But then, I started thinking about all these blessings that we have. I couldn't believe how much we have! And then the thought occured to me: "They always say the grass is greener on the other side...but I do live on the greener side." Allow me to share why our life is so great:


* I have a great husband
* He is kind
* He is patient
* He is smart
* He makes me laugh
* He shares my burdens with me
* I'm excited to see him when he gets home from work
* Samantha is a perfectly amazing daughter
* She is adorable
* She is fun
* She is starting to stand
* She is a good eater
* She is sleeping better
* She makes me laugh
* I make her laugh
* She's my little princess
* God lives
* He knows me, Marcus, and Samantha
* We have a great support system -- amazing family and friends
* We get to travel and see family fairly regularly
* Marcus has a job
* I get to stay at home with Samantha

And these are just a few. As I think about Samantha's life, I admit my feelings have waivered back and forth between feelings of peace and feelings of extreme sadness. I do not want her to leave this life, ever. I'm not ready to let her go. But then I'm reminded that, first of all, I don't have to let her go anytime in the near future. Yes, we don't know how long we have with her, but we most likely have at least a couple more years. Secondly, and more importantly, our family will be together forever. She will one day be made whole and we will always, always be together. She will always be my princess. She will always make me laugh. She will always light up the room when she enters. She will always have a mother, father, grandparents, aunts, uncles, cousins, and friends who adore her. She will always have our hearts. And in terms of eternal life, this earthly life is pretty short. So, I say, my life is pretty amazing. My life is pretty full and it's emerald green.
Samantha eating her pear.

Sweet Girl