Glimpses of normal

The past few days I have had a couple of glimpses of a normal life that I wanted to share.

On Sunday, the kids had a birthday party at the Little Gym for a five year old friend. When I arrived I asked her mother, my friend, if she had said anything to the staff about Nathan and his special needs. No, she had not and she was apologetic. I was thrilled! What it meant to me was that she sees us as a regular family and Nathan as a regular child. In her eyes we are not defined by our special needs, which is true friend. So Nathan and Libby participated. Libby was in an older group and Nathan in a younger one, but he did well! He kept up with most things, ran around in the circle and then some things he did rather slowly while a line backed up behind him. He did not care and I was able to not care too. I shouldn’t say he didn’t care. Nathan has a gift of being oblivious to most things around him. Let us hope it lasts! The other good thing about Nathan is that he knows his physical limitations so I was not worried about him doing anything too crazy. So aside from, “which one of these is not like the other”, he fit in and I was so happy that he could participate.

Last night we went outside to play after Libby got off the bus. I cleaned out my car while Libby, Nathan and Bennett played in the leaves. Libby raked a big pile of leaves at the bottom of the slide and then they slid down the slide into the center of the pile. Libby got out the little baby slide for Bennett too. It is so nice now that Bennett is walking and beginning to interact with his brother and sister more. They had a great time and it was definitely one of the more normal moments in our lives.

We had such a wonderful time at Disney being treated like royalty. It was wonderful to be picked up by limo, not having to wait in lines and having an all-expense paid vacation. As wonderful as this special treatment was, what I enjoy more are the glimpses of normal. Watching them be kids anot be limited by their physical issues are my happiest moments. My desire for more glimpses of normal far outweigh any other goals in my life.

Dear Miss Cindy

Dear Miss Cindy (physical therapist) Please don't panic, but we cannot find Nathan's new orthotics. When I picked him up at school on Thursday, he told me you had taken them off because his feet got sore (still getting used to them.) I thought they were in his backpack but when we went to put them on him, we could not find them. We have searched the car, other family members bags, the closet where we keep the bags etc. We are still looking and have not given up hope. Please don't judge us and think we are completely irresponsible parents! I never would have thought it was possible to misplace a pair of mafos but we seem to have accomplished the impossible. Our house is not that big so I'm baffled!! We will keep looking and will find them soon. Thank you for not being mad at us.

Happiness is....

Heartbreak is....putting 2T clothes on your 5 year old when you should be putting them on your almost 2 year old and knowing that your almost 2 year old most likely won't be wearing them for two or three more years. {Sigh}

But Happiness is....a one month supply of Pediasure! After months of telephone calls and paperwork, all done by Mark, we finally are able to have Pediasure delivered to our door and paid for through our insurance! Yippeee!!! This saves us a ton of money and many trips to Walmart! Drink up boys!!

Rough couple of weeks

We have had a rough two weeks since getting back from Disney. First Bennett was sick, fever throwing up and thrush (not typical for an almost two year old) followed by Nathan getting something similar. They both recovered by last weekend but then this week I have had a bad cold all week. I'm not sure where I got it because it is completely different than what the boys had so who knows. Yesterday after school, Libby was taking care of her brothers while I rested on the couch. At one point she brought me a tray with a plate of crackers, pretzels and a drink. I was in and out of it for a while but I'm sure I heard Nathan request more marshmallows. She was happy to be in charge for a little while! Finally today I felt a little bit better.


This past weekend I went to the beach with some girls from college. It was nice to get away but these things are always a Catch 22. When I am home I see the progeria features but when I am away I think about the progeria and don't have their little personalities to push away those thoughts. The other thing about being away with friends is that I picture their typical kids. Please understand that this is all my doing. The stories are casual normal stories but I pick up on the tiny little things; stories that casually include a three year old running up and down the steps or riding his bike or even just kids having friends over after school.

In general it is hard for me to go away for a weekend. I'm very task oriented and I tend to think about all the stuff I could be accomplishing at home. But this time I really felt like I should go and Mark also insisted that I go. Not only did I have a great time, laughing and talking but at the end of the weekend there was a bonus! We came up with a great fundraising idea!! I am so excited and we are going to start planning in January 2011. I'm really excited about our idea. It's nothing that hasn't been done before in the world of fundraising but just seems to be the right one for us.

Praying for peace

This is a post I wrote last week:

Most of the time I think that I will never find contentment and happiness in this lifetime. Since Nathan and Bennett were diagnosed with a progressive and fatal disorder I have resigned myself to the fact that I will never find peace while my physical body is on earth. Obviously it is not a fun place to be. Any relief from this feeling is when I have hope for a complete cure and when I dream of having a typical, healthy child with teeth at six months, walking at twelve months, no screaming constipation and no wrinkly thin skin. Obviously the latter is not going to happen. When I lose hope in the former I am left to 'white knuckle it' through life.

As we return to our "normal" life after Memaw Falcone's funeral and our trip to Disney, I have been very sad about her death. Talking about Christmas plans and looking at pictures from just a few weeks ago it seems like she just vanished into thin air. I came upon two of pictures that made me really sad. The first is from just two months ago. The second is one from Memaw's birthday dinner in June.




Anyway, the other thing that struck me in the days since Memaw's death is that she was so young. Normally we experience a natural separation from our parents and grandparents. They become less involved in our lives and the roles reverse. Rather than them providing for us, we begin caring for them. At 65 years old, Memaw was still parenting and grandparenting us in lots of ways. It has been a reality check for me about the boys and what their life span will be. There are five other known cases of Mandibuloacral Dysplasia, two of whom are living and three of whom are deceased. The three who are deeased died at the ages of 2, 27 and 37 which is obviously a pretty wide range. Mark and I dream of a lifespan of fifty years for our sons. This number has no official or scientific basis and is assuming this clinical trial will be as affective as it is in mice and that it will have minimal side affects (a lot of ifs). It is just a number we came up with through some crazy calculations of converting mice years to human years but all of a sudden that number seems too young too.

So my point is that most of the time I am sad and can't imagine finding peace and contentment in the midst of a disorder that will age my children at a rapid pace and will get worse instead of better. I had a light bulb moment way too long in the making. I realized that yes, God can help me find peace in all of this. I know I am a fledgling Christian, forced to rely on God because of our circumstances but I am feeling ready. I am ready to trust Him to help me find peace and happiness. That is what I want for myself and my family more so than physical healing of my boys. If that comes in the form of a cure then that would be wonderful but I have to be open to idea that it may come without one.

Wave of sadness

I am experiencing a wave of sadness right now. It seems that when I am in our little world, where my kids are my kids, I am able to swim against the current. Then when we are out mingling with the world of typical children it is like a giant wave comes and knocks me on my butt. Part of this is also due to seeing the changes in Bennett. For so long we had Libby who is a typcial kid, Nathan who is different in ability and appearances and then Bennett who could pass as typical. Now we are headed towards having two kids like Nathan who look like a disorder rather than their own little people. Bennett's fingers have really changed as you can see from this picture. They are becoming more like Nathan's. His profile has changed a little bit too but not has much as his fingers. If you look closely at the picture below (or click on it to enlarge it.) you can see them.

Disney 3!

Here are some more pictures from our Disney trip. There are so so many that I find it difficult to choose. Here is a sampling and I will only torture you with one or maybe two more blogs with pictures from our trip.

Universal Studios- Disney Part 2

Apparently Bennett did not enjoy this Dr. Seuss ride as much.

It was in the dark and the cars spun around pretty quickly.

Nathan wasn't tall enough to ride the Simpsons ride with Mark and Libby so he immediately ran and got his Mickey Mouse ears so he would reach the forty inch mark. We still did not let him ride but I thought it was so cute!!

I took this while we were waiting for Mark Bill and Libby to take the Simpsons ride. I was trying to get a picture of the diaper sticking out the top of Bennett's shorts but it really can't be seen in this photo. I've been nostalgic about this being our last child and that is one of the things I will miss about having a toddler, so so cute.

We Are Alive!! (Disney Part I)

We are back from Disney and we had a great trip!! We did not have wireless internet access inside our villa and did not have time to go the main office to update everyone. We were too busy trying to pack it all in!!

We stayed at Give Kids The World Village which partners with the Make A Wish. It was a wonderful place with so much to do. Each night they had an activity, mornings there were characters and in between there was a playground, splash pad, carousel, mini-golf, two pools an arcade room and more. Unfortumately we did not have time to take advantage of all of these things. We spent all of our time trying to see all the attractions. Meanwhile my kids would have probably been happy to stay within the Give Kids the World Village for a week without Disney World, Sea World or Unvirsal Studios. We had a three day pass to Disney, one-day pass to SeaWorld and two-day pass to Unversal Studios and packed things into every minute of every day.

Mark was a lovable drill sargeant allowing for little down time between attractions. He was usually 12 steps ahead of me, Libby and Pop Pop and took the kids autograph books very seriously. He would pull the stroller up to the character, flash our Make A Wish/Give Kids The World badge hanging from his neck, whip the autograph books out of the strollers and before you knew it the kids were having their picture taken with the character. Neither of us like to get special treatment or do anything to draw attention to ourselves, especially Mark; however, he really got the hang of it at Disney. Bypassing all of the lines was by the far the most wonderful part of the trip. Unfortunately it may have ruined us for amusement parks. We bypassed hour long lines!! We could not have done a quarter of the things we were able to do had we not been able to bypass the lines.

In light of Mee Maw Falcone's death we asked Pop Pop to join us. He was able to purchase last minute tickets and joined us on Thursday. He was a big help getting off and on the tram, taking kids on rides and even watched the kids while Mark forced me to go on a couple crazy roller coasters together. Hopefully it was a nice distraction for him too.

The limo picked us up at our house at 9:00AM

Our two bedroom, two bathroom villa is the left side of this adorable house.

This was our family the day we arrived at Give Kids the World.

to be continued......