Aging

I'll be humming along enjoying my kids and being happy and this is what always makes me slam on the brakes.



The aging process. These are Nathan's hands and they continue to get worse in my opinion. They appear worse in person than in photos, also my opinion.
Below are Bennetts that just a year ago appeared almost normal. Now they are looking more and more like Nathan's and to say that it breaks my heart does not even touch on the pain it causes.


It is the aging process that is the essence of this disease that causes me the greatest pain. The progression is difficult to watch in our aging parents, as their joints begin to stiffen, it takes them longer to get around and they are unable to do the projects they enjoyed. It is difficult to watch in our 70 year old parents even though it is expected for many years. It is unfathomable to watch at a much more rapid pace in our kids. At the end of aging there is only one thing. Yes, eternal life for those who Believe but to know that it will be the end of their life here on earth..there are no words to describe.

A year ago Bennett had a full head of curls! How fast this aging must be going? How much time do we have?

In a comment on my blog a reader suggested that a recent post was "all about you." Yes, it is all about me. It is all about me feeling sad that my boys will not have a future if things keep up at this pace. It is about me, wondering when this progression will make things like walking up and down the steps {which they haven't even mastered yet} more and more difficult. Wondering if there will be a window in which they will have the strength and mobility to do these things. Daydreaming about one story homes is something I should be thinking about for my parents, not my two and five year olds. I know that I am strong because every day I get up despite these fears and fight through the day. Not always at 100% because yes, I am sad but believe me, it is sadness for my boys and my girl.

Disney anyone?

If anyone is going to Disney World in the near future, please let us know. Nathan's sunglasses broke and he loves them!! Not only does he love them but sunglasses are a necessity for him and Bennett with their sensitivity to the sunlight. Of course we could get different sunglasses but why not have fun ones. I forget if they were $10 or $20 but we will happily pay for them if someone is there and can pick them up. I have looked online and have not been able to find them. Thanks!

Accidents

Nathan had an accident at school yesterday. He was running in the classroom and hit his head on a chair. We went to the emergency room and they decided they could dermabond and not do stitches. It was really a very minor incident and could have been much worse. I am so glad there were no broken bones, he missed his eye etc. The emergency room visit was very quick and easy. The one doctor (who happened to look like Charles Manson) asked if I remembered him. "From which time" I asked thinking it was my recent hospital visit with the stomach bug. He remembered Nathan from three years ago when he had a skull fracture.


My kids are so cute and I wish we could have an experience like that without the elephant in the room. Everyone fusses over them and talks to them but meanwhile I'm trying to determine when I am going to make the big announcement. Of course they see that something else is going on besides the bleeding head but telling them of the diagnosis and then wondering if they have ever even heard of the condition. That is one of the things I actually enjoy about being in Boston. I don't have to explain to anyone what they have, what it means and spell Lonafarnib six times.

The other accidents I'm referring to also involve Nathan but it is about toileting accidents. He goes in phases. He'll be good for a while and then have three accidents daily for several days in a row. It is always #2. Sorry for the gross topic, but it is really weighing on me. I am worried about kindergarten. I do not know if it Progeria related or not but I assume it is since he does not seem to know if he had an accident or not. Again, sorry for the graphic details. I have been praying that this is more behavioral than medical/physical. We would appreciate any additional prayers that this will resolve before September.

Cousins

Last night I fell asleep to the sound of giggling girls. What a wonderful sound! Libby and I are back from visiting my sister in Virginia and my niece came home with us for one night. She is a week older than Libby and they are having such a great time. Libby and I spent three nights down at my sister's house so this was their fourth and last night together. They have really matured in the last year and this visit has shown how much they have grown. They have gotten along so well. It does not hurt that C is a middle child and so she is much more flexible than Libby who is used to being in charge. I am so grateful that they are so close in age and that we have the chance to get them together despite being six hours apart (9 hours if you go by my trip down on Saturday in the rain with construction on 95) And despite the fact that Libby is a tomboy and C is a girly girl, when you are eight you can find lots of common ground! They wanted me to take picturs of them walking casually through the neighborhood so here they are!

And here is my niece who will be two in June. She looks just like Donna and I did when we were babies. I was nervous about being around her but she was so much fun to be around. It does make me sad that Bennett has progeria but it did not keep me from enjoying spending time with her. Saturday we will be seeing the whole family so we will see what trouble A and Bennett can get into together!

Rough Week

It has been a rough week for me. Surprisingly it has not been about about the miscarriage specifically but more about the grief that it triggered. The one major reason I am sad about the miscarriage was because we were so hopeful for a healthy baby. The chance to have a baby minus the NICU part, minus the physical therapy, early intervention and extended baby stage. Like I said in my last post, I allowed myself to go to the "poor me" place. In terms of clubs, I am now a member of the infertility, prematurity, nicu, special needs, adoption (a good club) and now the miscarriage club. Of course it makes me a much more interesting person but I would prefer to be less interesting. The miscarriage has also brought up the sadness of losing Mark's Mom which was just six months ago. I think part of that is the change of seasons too. Just being in a different part of the year and knowing that another holiday is coming and she is not here. Then I feel sad for Aunt Andrea who lost her Mom. I do not know why all these feelings flood me but they do.

The worst part of the week has been being angry and snapping at the kids. Mark has been working late all week and after losing the weekend because of being in bed both days, I have been overwhelmed but also paralyzed. I have been especially short with the kids and it breaks my heart. The one morning I yelled at Libby to "grow up" after she threw fits for the twentieth time about what she was wearing to school. Her response, "Mom, that is very rude to tell a kid to grow up!" Ughhh yes, she is right. Nathan has a touch of OCD and once he gets a thought in his head, he will not let it go. (His teacher at school can confirm) So after the tenth time he asked me why he was not allowed to watch tv, I snapped at him. I thought I was just being firm but he must have been mean because this is was his response.

Nathan "I am leaving this house!"
stomps into the kitchen

Me: "Where are you going to go?"

Nathan: "I don't know. Somewhere else!"

Me: Don't you think you should take some stuff with you?

Nathan comes back and gets his shoes and his drink and stomps off again. In the kitchen he puts his shoes on and returns to the living room. He opened the door and closed himself between the inside door and the screen door. Minutes later he reappeared.

Nathan: "Are you ready to be good to me?"

It was quite comical but it was also enlightening. It takes a lot to make Nathan mad. He is sensitive and will cry at the drop of a hat but he does not often get mad so I knew I had to change my attitude.

This week has made me sad all over again about the boys. I had a minor respite with the hope of a typical baby with a mouth full of teeth and a full head of hair but this week it has been like seeing the boys for the first time. The visible signs of their condition has cut to the core. And on top of that I miss Peg. I feel like I don't deserve to say that because she was my Mother in Law, not my Mom and I complained about all the Mother in Law type things that she did but I miss her. On a week like this she would have come over at the drop of a hat and spent time with the boys. Nathan and Bennett would have had a reprieve from their grumpy mother and I would have had a cheerful visitor in the ever-optimistic Peg.

So Libby and I are having some girl-time and visitiing Aunt Donna in Virginia for a few days. I am praying that being around my almost 2 year old typcial niece will be okay. It will definitely be more difficult without the hope of being pregnant with a typical baby.

Thank you

Thank you for all of your thoughts and prayers. I am feeling much better today physically and emotionally. As most of you know our three kids are quite a handful so I've convinced myself that having a fourth would put me over the edge. I really think that our loss was not like those who go through a miscarriage later in the pregnancy or after years of trying. That must be devastating. We had a whole list of cons to fall back on including the biggie, the anxiety of having another child with progeria. I had a small episode of "woe is me" on Sunday. I know there are many many people that experience miscarriages but we have experienced infertility, prematurity x 2, special needs x 2 and now a miscarriage? Really? One would think we could have been spared that one. I started thinking of that old Hee Haw song, "If it weren't for bad luck I'd have no luck at all."But my pity party was short lived because I know we are very lucky in so many ways. As if on cue, the kids were especially cute over the weekend, played together and were really funny at dinner. Bennett is such a ham and at dinner last night he was putting his dirty hands on his head and getting a laugh out of Libby and Nathan. Mark and I tried not to laugh. Nathan started shouting "Bravo, Bravo" and we lost it! It was exactly what we needed at the end of a rough weekend. For me, the weekend was topped off by a bonus Monday of thrift store shopping with my mom and sister. We had so much fun and got lots of good stuff!

Our Mini Emotional Rollercoaster

So we have been on somewhat of an emotional rollercoaster the past month. I apologize in advance if this post is all over the place and does not make a whole lot of sense. Last month we found out that I was pregnant. It was quite a shock and we found out super early because I was at the hospital for unrelated issues. To say we were in disbelief would be an understatement. It didn't make any sense. After years of infertility and trying for quite a while even with Bennett, how could this happen accidentally? Well we know, but..... How could we afford another baby when we can barely afford the three we have? How would we give all four kids the attention they deserve? What would people think? And of course, what if the baby had Progeria or something different? I cannot fathom being a member of yet another club! Adoption and Progeria are keeping us busy enough. We had gotten rid of all our baby stuff used from Libby through Bennett. I know we could get more but emotionally we had moved beyond the baby stage.

When we were pregnant with Bennett, it was thought that Nathan had Pycnodystosis which they would have been unable to detect with prenatal testing. So I contacted Livia at CHOP to find out if a CVS could detect Mandubuloacral Dysplasia. Out of the kindness of her heart she went about making arrangements with Genzyme Corp {genetic testing} to test for MAD {25% chance and we are 2 for 2} and Progeria {just to be safe} at the 11 week CVS. Shockingly neither are part of the normal prenatal screen. I started feeling very tired, my waist got a little bit bigger and we started getting used to the idea of the complete chaos of having four kids. I bought her an outfit which I had done in anticipation of each our three kids. We started talking about names even though it was really early.

So this weekend, I had a miscarriage. Despite knowing all the reasons that having another child was bad idea, it still feels like a loss. It feels weird to feel sad about losing something that you didn't know you wanted in the first place but at the end of the day how can you not want a baby. Its so exciting to be expecting a baby. Not only has the miscarriage been extremely physically painful but it feels very weird to feel pregnant one day and then the next its gone. This pregnancy was so unexpected and so unlikely that we thought maybe it was a meant to be. Its not like we could possibly pursue having another biological child. Although we discussed it with this pregnancy, I cannot imagine making the decision to terminate a pregnancy due to Progeria or any other genetic disorder. The miscarriage unearthed all those crazy thoughts of testing the embryos we have in storage but that is just not a possibility. So the only way I can make sense of this is that perhaps God is using it to prepare us for something else, something better!

I told Libby what happened, that I did have a baby in my belly but it was no longer. I wanted her to know why I was in bed in physical and emotional pain all day. With all of her anxiety we often try to spare her the details of things like this but I felt like it could be a teachable moment. Mommy and Daddy were a little sad but we would be okay and will be happy again. Here are three little cards she made me throughout the day yesterday when I was in a lot of physical pain. Today I am feeling a little bit better but still cannot do a lot. Today my kids look cuter than ever to me!



I also have to add that that I know that this miscarriage was nothing like many other people go through. I was only 7-8 weeks pregnant and many women have miscarriages at 12 and 13 weeks. For many of those women it was a long anticipated pregnancy and they do not know if they will be able to have children at all. They do not have the list of "cons" to fall back on for comfort. For us it would have simply been a bonus, some icing on the cake!

In the words of Marie Osmond...

I was watching a repeat of Oprah on Tuesday and Marie Osmond was on talking about the death of her teenage son. Her son committed suicide. She tearfully said that the pain of losing a child does not go away and does not get better. She said that God gives [you] brief respites from the grief but in general it is ongoing. That definitely sums up how I feel about my grief. I often feel like "it is what it is" and I should get over it but what Marie Osmond said is more realistic in my case. Here are a couple pictures of Bennett this morning. I bought this hat on Ebay for Nathan. I saw one on a little boy at work and had to have one for Nathan. I thought it would make him look cooler! So I way overpayed because it was the only one like it I could find on Ebay and it turned out it did not fit Nathan. It is a little too big for Mr. B but cute anyway. He has refused to wear it for a couple of months. He often does this with things like drinking from a sippy cup and then one day, he just decides its okay. Well today was the day!