Comments (9)

By Lana, October 20, 2008 9:34 pm

This is a true story….

Once upon a time a mom was looking for a stroller for her daughter. The little girl was very special indeed and needed a stroller that would recline just right so that she could sit comfortably. The daughter had heavy medical equipment that needed to fit in the stroller. The mom looked and looked, to no avail. She called bunches of people, asking for suggestions and got some great ones, but nothing quite worked for her daughter. She emailed and posted on several message boards, asking for more suggestions.

The mom spent an hour in a baby store, testing out strollers, hoping her daughter could sit in one and that somehow her daughter’s medical equipment would also fit. A young man walked up to the mom and said, “Did you find what you needed?” The mom said she didn’t think so. The young man said, “Don’t worry. God will make a way.” The man walked away and left the mom wondering who he was and thinking that maybe he was an angel.

The mom was about to give up when she got an email from a lady saying she had just the stroller for the very special little girl. So the little girl and her whole family drove to the lady’s house. The little girl and her family had never met this lady. The lady was right, she had the perfect stroller for the special little girl. It was a stroller from New Zealand, no longer made. It had a hammock style reclining seat that the little girl could lounge in. It had a small second seat behind the big seat for ALL of the little girl’s equipment. It had bags to hold all the extra stuff that the little girl needed. The mom was excited because the stroller was light-weight and easy to get into the car. And it had a big swivel front wheel to make walking through stores easier (The mom really liked to go to the mall so this made her very happy!) Out of the goodness of her heart, the kind lady gave the stroller to the family for the very special little girl.

Thank you Kathi for your amazing generosity. I am sure that you just added a big jewel to your crown in Heaven! And thank you to God for showing Yourself faithful once again. Over and over and over You have provided everything for Carmen and left us amazed and thankful.

The stroller is a Phil & Ted Kiwi Explorer. It is similar to the Phil & Ted inline stroller that you can find in stores, but the main seat is bigger and the second seat is further back from the main seat. This extra space between the main and second seat accommodates all of the equipment. The stroller is approximately 25 inches from top to seat so Carmen has quite a bit of growing room. I would have NEVER known to look for an older version of this stroller so thank you, thank you, thank you to Kathi!

Here are some pictures from today. I haven’t taken the girls to the park in months so this was a VERY special treat. And now that we have wheels, we are going to take advantage of the beautiful weather for as long as possible!

This is the stroller with Carmen in the front and the suction machine, oxygen tank, feeding pump and bags, and stroller backpack in the back seat. I am not sure I put the side pannier bags on correctly but they provide even more storage (one pannier bag on each side).

Carmen resting in the stroller.

Lauren getting tired of me taking pictures of the stroller and pointing to the playground!

Lauren thoroughly enjoying the swing!

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By Lana, October 18, 2008 11:08 pm

The Strength of an Egg
by J. Freitag

Parents of children with a terminal illness are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes! If you’ll think about it, you’ll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid. Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength. A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. “Balancing an egg” while running a household, going for doctors’ visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of medically fragile kids will pick themselves up and put themselves back together again.

I don’t normally post quotes or stories but I liked this one. I feel very fragile most of the time, just like an egg. Honestly, the only thing that is holding me together is God’s grace. When Carmen was first diagnosed, a friend of mine who has experienced great pain in her own life told me that I needed to read the Bible like never before. I’ll be honest and say that I haven’t spent much time reading the Bible in the past year but recently decided to read through the New Testament. I’ve read parts here and there but never from beginning to end. I am happy to say that I look forward to each chapter and my friend is right, digging into the Bible is keeping me from cracking! Today I commented to Dave that I have started reading through the New Testament and he said he is too.

Recently Lauren and I stopped at a garage sale and picked up a sand art jewelry making kit. Lauren made a bracelet for Carmen. The picture below is Carmen wearing the bracelet. Doesn’t Carmen have nice pudgy hands?! It often strikes me that Carmen is so beautiful and wonderfully made yet her body is wracked by such a horrific disease. When Carmen’s geneticist first told us that she suspected Carmen had Tay Sachs, I asked her why Tay Sachs. She listed the symptoms- exaggerated startle reflex, developmentally delayed, cherry red spots, etc. Then she said, “She is beautiful. Children with Tay Sachs are always beautiful.”

Comments (4)

By Lana, October 17, 2008 10:25 pm

Update on Carmen: Carmen seems to be doing very well. Her breathing sounds good and she seems very comfortable. She started her 4th week of Flagyl to try to get rid of the C-diff. She continues to have daily diarrhea so we may have to move to the next antibiotic if Flagyl doesn’t wipe this stuff out soon! The good news is that all the probiotics we are giving her have cleared up the oral thrush and the yeast infection.

Last weekend we went to the SugarLoaf Craft festival. We ended up in a kids’ theatre production. Here are some pictures.

Lauren as the gypsy girl.

The show in progress. That’s me in the cream colored dress with my back to the camera. I was the queen.

The dead king with NY grandma (the evil princess) aiming her bow and arrow!

Comments (17)

By Lana, October 15, 2008 12:29 pm

Happy birthday Dave! We love you so much and hope you have a wonderful day!

Fun fact about Dave #7:

This is more of a true fact than a fun fact but I wanted to say that Dave is a wonderful husband and father.  I couldn’t ask for a better husband and the girls are so, so blessed to have a daddy who loves them and spends so much time with them.

Dave, I don’t know what God has in store for our lives but I am so thankful I have you to share life with. You have handled Carmen’s sickness so much better than most would. You are truly the calming factor in our house! (No need to amen that!)

Note from Lauren:

Dear Daddy,

I hope you have a great week. And a great birthday! Lauren loves Daddy. Carmen loves Daddy too.

Looove, Lauren

Lauren colored a picture for you today.

Comments (8)

By Lana, October 14, 2008 9:14 am

I am afraid that Dave’s actual birthday is going to be anticlimactic after all of these posts!

Fun fact about Dave #5:

Dave doesn’t watch much TV but he does watch sermons on DVD. His collection of sermon DVDs includes Pastor Dale, Andy Stanley, Louie Giglio, Rob Bell, and Erwin McManus. Dave is greatly inspired by strong leaders and the previous men have made a profound impact on his life.

Fun fact about Dave #6:

Dave’s dream is to make movies. It started a few years ago when he was on the video team at church and then when he started working on videos of Carmen’s life. He is creative, driven and good at just about everything so whatever he works on turns out amazing. I am probably seriously embarrassing him so I’ll stop now! Just don’t be surprised if someday you hear that Dave is in L.A. making movies! (Even though he doesn’t watch much TV, he totally got into the show On the Lot, a reality show about film producers.)

Rashmi, www.rashmipappu.com, took this picture of Dave and Carmen on Carmen’s 2nd birthday, July 20, 2008. I love this picture. Carmen is safe in the arms of her daddy.