A little bit of cheese!

You all know I am not very cheesy but this I really wanted to share. I gave up on my flower beds this year. For some reason the mulch did not discourage the weeds like previous years and I just couldn't keep up. It was too hot to weed and I did not water often enough. In my side flower bed I have daisy's that always do well regardless of what I do or don't do them. They are my favorites because I can cut them and put them in a vase in the house. In July, right before they were about to bloom, a bad storm knocked them all over, folding over in all different directions. I hated looking out my kitchen window and seeing the disheveled mess and propping them up would have been just as unsightly so I took the hedge trimmers and trimmed them all the way down to about four inches. So this morning I looked out the kitchen window and this is what I saw.

Two daisies!! One for each of my boys. It just seemed like a good sign. It seemed like God's way of telling me that the boys that will be okay, that they will get big and strong despite all the obstacles they have going against them. The picture below is really bad but it shows you all how low I had cut them.

Miserable

Bennett has been miserable yesterday and today. We did have a busy day on Saturday driving to New York to see family but he slept for three hours each way. I am hoping and hoping and praying that maybe he is getting all of his teeth at once! Wouldn't that be nice? At twenty months I think it is time.


We did see lots of family on Saturday at a block party on Long Island. It is so so difficult to see little kids Nathan and Bennett's age doing the things they should be doing. Babies younger than Bennett running around independently is really hard. Even more difficult is knowing that their parents can enjoy them without the thought of a shortened lifespan hanging over their heads. It is just a reminder of how much of a minority we are. Most people do not have to deal with infertility and devastating medical diagnosis two times over. Plus I hate the curious looks from people who I'm sure have gotten the story of what we are going through. It stinks that we require an explanation whenever we meet someone new. Even just running into a mom at the mall with her friends, I watched as they walked away and looked back at our family. I'm sure they got the explaination. And they should, but it stinks that it is required.


The predicament is that if I avoid situations like that, I am making my family suffer. But if I go, it causes much more heartache than I typically feel. Its a catch-22 for me but not for my family so I have to buck up and go. It is selfish of me to let this ruin our family time together by moping around. So I tried, I really did but I was so happy to be home in our little house and be with the kids without comparing them to others.

Venturing out on his own.

Well Bennett is venturing out on his own. I have seen him walking three to four times today! It is very cute. It takes him forever to get himself up in the middle of the floor. His feet and hands are on the ground, he gets his butt up and then he is perched there for a while until he can get himself upright.

And in other good news, Nathan weighs 29 pounds!! Pretty exciting! He is also showing some promise in his jumping skills and seems to be able to get both feet off the ground to jump over a line. This is huge for him!

I am not feeling it tonight. I am forcing myself to write the good news and celebrate the accomplishments while crying about the reality. I'm tired and sad that this disorder overshadows everything else.

Stairs

Bennett is walking with push toys and will take several steps independently when he is forced to do so. I have only seen him let go voluntarily a couple times when he moves from the coffee table to the couch. It's pretty cute. Hopefully he will get the hang of it soon. He still has no teeth, at twenty months old. I would love for him to get all his teeth at once at this point! Any prayers you could spare for some teeth would be much appreciated.


He is becoming quite a handful these days. When not supervised he gets almost all the way up the steps. Its time for the baby gate at the bottom of the steps which we never needed to use for Nathan. Kids are all so different.

About the steps...Nathan at age five is still not close to being able to go up and down the steps independently. This is something that a typical child might have been able to do two years ago. It would make things so much easier if he could go upstairs and get his pjs, brush his teeth or go up and down the steps to play with Libby. Right now, the kids have to decide if they want to play upstairs or downstairs. If it is upstairs, we have to take Nathan up and put the gate across the top of the steps. Then if they need something downstairs we have to go and open the gate for Libby to come down etc. I know it is not the biggest deal but it would be so much easier. Plus it would make things more equal and fair for Nathan and Libby. Right now we get everything for Nathan but Libby has to do it all herself. We ask Libby to take her shoes and other stuff upstairs but we take Nathan's up for him. Our steps just happen to be pretty steep because we are in an old house so I don't even know when he will be able to, let alone Bennett. Anyway, that is one of our biggest issues! When we were looking for houses, a two story was a must but now we are thinking one floor would have been nice.

I see that....

Well today took a downward turn. I have been feeling pretty good lately trying to find the balance between hoping for healing for the boys and accepting where we are right now. That is a struggle that is unique to our situation. Although we still have our children here on earth to hold and to love, the prognosis is forever hanging over our heads. We cannot relax, we cannot move on and we cannot accept it because it is forever changing and the worst may be yet to come. The fact that they are here, leaves room for hoping but it leaves us in a precarious position.

Finding the balance for us mostly involves denial. We try to go on about our lives. Mark especially does not want to discuss it at length. I don't want people to tiptoe around me and pretend that nothing is abnormal but at the same time I do not want it to always be the focus of conversation. People want to say the right thing and it is so difficult for me to say what is right at any given time. There have been family gatherings in which I just wanted to scream-"someone say something about the elephant in the room!!!!" but that was also immediately following the diagnosis. I can tell you that I prefer not to hear anything that your children say about my children having special needs. Only a few people have done so innocently in the past. Although I don't know if it is the healthiest method of dealing with things, it is too painful for me to hear of discussions that are going on about my children. So somewhere between hoping and ignoring with a touch of acceptance is where we live.

So today I went to a consignment shop and Nathan had to go to the bathroom. It was a little shop and the owner let Nathan use the back bathroom. In the bathroom, he began screaming due to the constipation. I felt like an explanation was in order so I told the woman that Nathan has progeria and thus the constipation. Her response, "I see that. Both of your children have it right?" I wanted to disappear at that very instant. Those words, "I see that." slapped me in the face. She was a very nice person and very appropriate. She had not been noticably looking at the boys and was not in the least bit rude.

So this was shocking on a multitude of levels. Although she is not the first person to recognize progeria in Nathan, she is the first to verbalize recognition in Bennett. Even worse I felt like I was really good at sensing when people were looking at the boys but apparently not. Does everyone notice and I just don't notice them noticing? "I see that" means that we no longer have a choice to share or not share our family story. We have no control over our own story because when we interact with people, our story is evident. Although there are many benefits to our situation being visible, it made me feel so vulnerable and exposed.

I found some amazing strength today from way down deep. I wanted to run out of the store and call it a day but I proceeded to finish up my shopping, pay for my items and continue about my day. I called Mark which is when I let go and began crying. From the back of the car, Nathan asked if I was "cying" because he "heard you sniffling." I lied. How can I and how will I tell him that I cry because of him and his brother? Then the guilt sets in. How could I be sad about the way that God has created these two little boys? But often I am.

Happy Fifth Birthday!

Today was Nathan's fifth birthday!! I cannot believe he is five years old!! He was so excited. Memaw Falcone, Aunt Barbara and Aunt Andrea came over for pizza and dessert. My pictures did not turn out so I have nothing to show for the Banana Split Chocolate Strudel and the Mickey Mouse Ice Cream Cake I made. He got lots of goodies from family and friends including his favorites a Pillow Pet, a Lego Alarm Clock/Radio and a matchbox cars. We are not having a friends party much to Libby's dismay. Nathan is such an easy-going kid in that way so he seems fine without one. He was excited because Libby put up streamers and we sang and had cake.

Anyway, my point of this blog is something I have been thinking about from vacation, things that I found to mirror our relationship with God (my opinion of course). First of all, I am feeling much better since my illness and it seemed to actually rejuvenate me. There is nothing like appreciating feeling good and being able to do things. I don't think I realized how sick I really was. As usual I digress to things about me.

Last Thursday evening I told the kids I was taking them up to the boardwalk to meet our friends. They were so excited because they had missed out on some things and they were happy that I was up and moving around. Nathan was especially excited and kept saying things like "I love you so so so much." and "You are the best Mommy ever!" I promptly informed him that he should always love me and I am always 'the best mommy ever' even if we are not doing something super fun! It made me think about when and why we praise God. I always hear people praising God during the good times, when prayers are answered the way we want them to be etc. It is fairly simple and natural to praise God and love God during those times. He is worthy of our praise all the time and not just during those times when we are in agreement with his plan. I am assuming we should be praising God in the midst of tragedy as well as hope.
The other instance is difficult to explain so I really apologize if I make no sense at all. Mark tends to downplay most things as you must have gathered by now. Quite honestly it drives me nuts sometimes. Everything will always work out in his book, "it is what it is" and "I'm sure it is nothing." Early in the week I was worried about my stomach because it hurt so badly and I couldn't imagine what it would be. Mark's response was, "I'm sure it's fine." After the first hospital visit I immaturely and not so nicely said, "see, you said it would be fine!." In place of the humble apology I was expecting, Mark came back with "and it was, right?." I didn't quite know what to think about that response.

Rewind a few weeks and months, I have been questioning the terms 'faith' and 'trust.' What does it mean to have faith in God? We certainly cant have faith that things will turn out the way we want or that we will be safe physically and emotionally from harm. So Mark was right, everything was fine. In this instance, our vacation was disrupted, the kids were disappointed, my sisters were inconvenienced and we missed a family wedding on Saturday, all unpleasant. But the end result is that we are fine. So maybe this is the way faith and trust work with God, that no matter what happens to us physically, emotionally or financially, He will be there and we will be "fine." And fine is making the best of bad situations, enjoying the little things in life, finding a new normal and putting one foot in front of the other. Am I on to anything here? I don't know. This made a lot more sense when it was in my head. At the risk of sounding like one of those annoyingly positive people, being forced to examine all of these things feels like one of the gifts of being in our situation.

Here are a couple pictures of our cuties...

Vacation interrupted....

...as well as several of family's vacations. We went to the beach on Saturday for one week. We rented a house across the street from where my sister Jodi and her family were staying the first half of the week and my sister Susan and her family were staying the second half of the week. Well I got sick, on the couch all day Sunday. We said that if I didn't feel better on Monday that I would go to one of the urgent care facilities but Monday and Tuesday I was okay. Wednesday I was down and out again and by Thursday it was really bad. Mark had gone back to work on Thursday so Susan and her family helped me get to an urgent care facilitly where my fever was 103, I was diagnosed with a severe kidney infection and sent to the hospital. At the hospital I was given iv fluids, an antibioitic and pain medication to go. So I felt I was back in business. In retrospect we should have packed up and came home but I wanted to salvage one more day at the beach for the kiddos. They had already missed a lot. I started the antibiotics; however, by Friday morning I was vomiting and all day friday into Saturday morning I could not keep anything down. By friday night I was disioriented and despondant. By saturday morning they decided I should go back to the emergency room where once again I was given iv fluids for severe dehydration. They switched the antibiotic and anti-nausea medication and we came home. I stayed in bed for the rest of the day Saturday and all day Sunday. I knew I was really down and out because I didn't even have the energy to turn on the television or check my email!!

Anyway, my mom is here taking care of the kids which is wonderful although I do feel bad when they are talking back to her. I am trying to take it easy. This is the first thing I have really done all day. I feel badly for ruining everyone's vacations but I kept trying to explain away every symptom thinking there was nothing wrong. I will update later on the good parts of our vacation. There were some highlights when I was feeling good and able to participate. There were times when they had fun with Daddy while I stayed back on the couch. The kids enjoyed the beach, playing with cousins/friends and of course the boardwalk.