getting around

Bennett is continuing to develop his crawling skills and continues to get stuck in situations such as these.....(see below). He also gets up on his knees with his hands on the train table and is unable to get out of that position so he screams when he is tired! Keep in mind that Nathan could never do any of these things so I am thrilled! Even at 16 months, even though every baby that started with him in his class is walking and he is still sitting on the floor, I am just thrilled beyond belief and of course I take full credit. It was my determination, my habit of leaving him laying on the floor rather than sitting up that have led to this and I could not be happier. I know it is not technichally a developmental milestone but it is something I wanted for some odd reason. Similar to wanting that wheelchair ride out of the hospital with the baby on my lap (which I eventually got with Bennett, albeit 3 weeks after he was born). Anyway, just one of those things I wanted to experience. When I tell aquaintences, non-blog readers, that he is crawling, they are not nearly as excited as they should be. I politely correct them, 'No you don't understand, babies with progeria don't typically crawl!!!!' Then they appear to understand or at least pretend to understand.

This is Nathan and Bennett doing Row Row Your Boat. If Bennett is doing it alone, he gets his arms really moving, elbows all the way back kind of rowing! Mark and I have agreed that if Bennett did not have developmental delays, he would be as busy as Libby was when she was a baby. He is much more mischevious and curious than Nathan. He is on the move, emptying bins of matchbox cars, taking things from Libby and much more. I am not complaining, just enjoying (or enjoying pretending to complain)!


Despite all my efforts I continue to get no respect from my children. Mark asked Bennett where Mommy was and he pointed to his nose. After Mark stopped laughing, he asked again and Bennett pointed to his eyes..........ahhhhh such love!

crawling and strep

Thursday, Mark left for a weekend golf trip and my mom came down to help me care for my three kids. I cannot thank her enough and the people she left behind in Gap in order to help me. It was wonderful having her here. Thursday, Libby also came home from school early with a headache and a sore throat. After sleeping Thursday afternoon and evening, she seemed a tiny bit better on Friday and even a little bit better on Saturday. I took her to the doctor anyway just in case and sure enough, she has strep throat. So after several doses of antibiotics, she is feeling better and no longer contagious! Poor Libby.

So my Mom got to see the disobedient side of Nathan this weekend. In his defense, we were kind of stuck inside. He is constantly wrestling with Bennett, jumping on or near him, rolling around on the floor etc. Unfortunately Bennett usually enjoys this even though it can be dangerous. When he isn't enjoying it, he screams and Nathan keeps right on doing what he is doing. If you are (briefly) in another room you might hear a thump, Bennett crying followed by Nathan saying, "I didn't do anything to him." This of course means he fell on him, knocked him over or 'accidentally' hit him with a toy.

Bennett is on the move. He has been rolling everywhere for a while. He now is up on all fours and will crawl a very short distance. It is crooked and awkward but adorable!! He is really working so hard which is the cutest part! We brought down a walking toy for him and as soon as he saw it he got excited! He is not nearly ready for that though and almost fell on his face with help from Memaw Allison.

Bennett is coming alive in other ways too. All of a sudden he is attached to his little Mickey Mouse and tucks him under his arm when he sleeps. He also plays Row Row Row Your Boat with Mickey, holding his hands and moving back and forth. He screams at the appropriate part of the song ("If you see an alligator don't forget to scream-ahhh). He builds little towers of blocks and then claps for himself. He also claps for us when we play Wii! He says "Casey" who is our cat. He is still eating a ton and loves real food. My Mother was amazed at how much he can eat which seems to be more than Nathan (not difficult). Anyway, he is pretty cute right now, very full of himself and really interacting with the rest of the family!

Josiah

I never do this, but I was hoping that you all could pray for a little boy whom I have never met. Josiah is a little boy with progeria. His mother and I spoke on the telephone several years ago when they first told us Nathan had progeria. He is five years old and has had numerous health problems in his short life. He recently had surgery. Yesterday he suffered a severe stroke and is back in the hospital. Please pray for him, his mom and big sister. They are a great family, trying to enjoy life in the midst of some tough circumstances. Thank you so much.

from bad to worse....

Well yesterday went from bad to worse in the evening. I made the mistake of asking Nathan if he loved me or Taylor Swift better and here is how the conversation went:

Me: Who do you love more, me or Taylor Swift?

Nathan: (long pause....too long) both of you

Me: I know you love us both, but who do you love more?

Nathan: Taylor Swift and you. I love both of you.

Mark: No Nathan, If you had to pick one, Taylor Swift or Mommy, which one would it be?

Nathan: Taylor Swift

Me: What? (pretending to sob)

Mark: You just broke Mommy's heart Nathan.

Nathan: I love you too Mommy, but Taylor Swift is my favorite!

sigh....and I thought my day couldn't get any worse!

Crying

Well, I have been crying alot today. I don't usually cry anymore but today I am having a rough day. At the grocery store this morning there were boys everywhere, healthy boys with full heads of hair. There were even brothers that appeared to be the same ages as Bennett and Nathan and of course they appeared at every aisle. Then at the checkout, there are the pictures of the celebrities with their healthy children. When am I going to realize that 99% of kids appear to be typical kids. I am not going to see people like us out in public, or in advertisements or on television. My boys are not perceived as beatiful babies because they have wrinkly, dimpled skin, hair loss and visible veins. It hurts! I just wish my boys looked like little boys.

Bridget Jones referred to married people as "smug marrieds." That is how I perceive strangers with typcial kids, that they are members of a club that are better than me and my kids. I hurt so badly. Libby will soon get off the bus and I will have to put on a happy face and be a regular parent. Sometimes when I hear myself joking around with the kids I feel like it is someone else talking because what I am saying does not reflect my mood. I am so so sad. Progressive disorders stink!

Libby's school concert

Libby is in first grade and I have officially missed three of her four concerts thus far. On Thursday, Nathan woke up with a fever and a stomach ache. Mark called Meemaw Falcone to see if she could make it to Libby's 9:30 am concert and I stayed home with Nathan and Bennett. Libby took it very well and was excited that Meemaw went to see her. She did fuss a little bit and a couple times said she didn't understand why God had made Nathan sick on the day of her concert. She thought God was pretty mean to make that happen. How do you explain something like that to a 7 year old when you don't even understand it yourself? There are whole books written on this topic and varying viewpoints. It is so hard when your kids ask you something that you yourself are struggling with as a parent.

I am still struggling daily with the boys condition. Seeing Nathan's features is such a struggle. Thinking about where Bennett should be developmentally is so painful. I am so tired of putting the same clothes on Nathan year after year. His 2T shorts fall of of him! And of course, it is not the clothes. It is what it means about his health and his future. I often wonder how I am supposed to function day to day. Is it really possible? I also wonder what it must be like for those who are not dealing with this situation. I know that life is hard even for those with normal lives, but I wonder what it must be like not to have this weight all the time. I know I am rambling here, but all these thoughts have been swirling through my head lately. I can not believe we are experiencing something that will always affect us. So many crisis can be ridden out thinking, "this too shall pass." But this time, this time it is so big, it will not pass. It's not like a lost job, financial troubles, relationship problems etc. Even after infertility, I felt like I could pick myself back up and be happy. But this will be with us forever and we will forever be affected. There is such a hole in my heart of the things I have never experienced, being pregnant at the baby shower, going home with baby from the hospital and enjoying those early baby years. I want to be happy again.

The following story has nothing to do with our special needs kids, but it must be shared. Tonight we were getting ready to take Libby to an overnight birthday party and the rest of us were going to visit some friends for pizza. Mark needed help in the basement changing the water filter. He unscrewed the cover thing and something snapped. Water started shooting out everywhere!! Our basement was flooded within seconds. Mark was panicked. I was trying to hold a bucket up over my head to catch the water that was shooting out in one of the many directions (??? don't ask). Libby was upstairs freaking out, asking if the whole house was going to fill with water!! Nathan had an accident because with all the commotion he forgot to go to the bathroom. I went to get the neighbor who happened to be outside. He came in and found the shut off valve fortunately rather quickly. So six hours later and a hefty plumber bill, Mark is still downstairs cleaning up water. Poor Nathan cried about not going to "Miss Michelle's house" because she was going to make him brownies. He is such a good kid and bounces back pretty quickly. A trip to Home Depot with Mark made him happy.

So I guess staying home on a Saturday night cleaning up a flooded basement only contributed to my general malaise described above. Plus I must admit........I miss my Libby. She talks constantly but it is too quiet without her.

Different Needs

Libby was helping Nathan take off his orthotics and she asked if other people in his school had mafos (dafos-whatever you want to call them). Nathan said no just him and B (a little girl). Libby asked why and he said "because me and B have different needs." I thought it was so cute. I can just picture one of his teachers or therapists explaining it that way. I am so glad we have come so far in the world of special needs. Me, I still am having trouble with it all but the kids just seem to go with the flow.

It is that time of year again....the time I dread, when the kids want to play outside. I am thrilled that they want to play outside; however, the nervousness about Nathan falling is going to be the death of me. I actually have been much more relaxed about it but every once in a while I cringe when he climbs up the ladder to the sliding board. I have to do alot of self-talk. I really wish he would just wear his helmet outside all the time. After he rides his bike; however, he rips it right off his head. I always hope he will forget he has it on and go about the other activities. He really has been doing alot better on the uneven surfaces, he just does not look very stable. Last week he slipped in water on the driveway (they had the hose out) and his one leg literally bent backwards behind him. I was freaking out but he was fine. I am so glad he was okay and didn't break anything. It's those near misses that keep me worrying.

Bennett

I am determined that Bennett is going to crawl. He is really trying! He definitely has a combat crawl thing going on but is still struggling to stay up on his hands. When he does get up on his hands and knees, he looks like he is trying so hard to get that movement going, right leg right hand, left hand left leg. Its really cute! Nathan never crawled. He did this scooching thing on his butt which drove me crazy!!

Bennett continues to eat alot!! With Nathan, we were never sure if he was not eating enough to gain weight or not able to gain weight because of the disorder. With Bennett it is obvious that it is the disorder that is keeping him from gaining weight. Even without teeth he seems to do better than Nathan did with textures. Speaking of teeth, I'm not sure what is going on in that department. Nathan had teeth by now.

The best thing about Bennett are his hugs. He wraps his arms around your neck so tightly it is amazing!

Easter

We made it to Easter lunch at the Allison family house. By some miracle, the boys escaped the stomach bug!! I'm not sure how that happened but I am so thankful and hope we are out of the woods. Easter was fun. The kids got way too much candy of course and our house looks like an Easter bomb went off with grass, baskets and plastic eggs everywhere. Here are pictures from the Allison egg hunt (12 of the 15 grandchildren, plus one girlfriend and Mickey). I am always surprised when I look at pictures and see how tiny Nathan is compared to other kids. I know he is still only 26 pounds. I know he still fits in 12-18 month shorts, but seeing the photos, how he looks like a miniature person is always alarming and heartbreaking to me. Bennett and Nathan's eyes are really sensitive to the sun so we always have a hard time getting outdoor photos which is why they have a hat and sunglasses.

a sickness

Well, Libby caught a stomach bug. Yesterday around 5:oo on our way to Aunt Andrea and Uncle Jeff's house, she threw up. So Libby and I missed the Falcone Family Easter celebration. When we came home she didn't even ask to play the Wii. She has been down and out all day today too, but the throwing up stopped in the middle of the night. The up-side is that we were able to baby her for a while and worry about her and show her that when she is sick we fuss the same as we fuss for her brothers. We waited on her and and she got to have pedialyte popsicles. I felt so bad for her. It is not often that Libby is missing her spark. She watched Hannah Montana the movie twice and I didn't hear her laugh once. Mark and the boys have not gotten it. I felt really bad for most of the day today and spend the latter part on the couch but don't seem to have it as bad as poor Libby. Hopefully we will be able to attend the Allison Family Easter tomorrow.

And the other news from Friday was that Nathan got up on the potty all by himself! He was so proud of him and very happy that he will be able to do something else independently. Later he asked for a boost to get up on the bench and when I told him he could do it, he said, "If I got up on the potty, I can do ANYTHING!"