Digging Out

Well this episode has proven to be tougher than many previous ones. I am continuing to work my way out of the sadness but it is a slow dig. I am in slow motion with everything I do. Taking care of three kids is alot of work and it is even tougher when every step, every movement is a result of the decision to keep moving forward. And then once you get behind in your work it all just snowballs. Like I said, this is worse and longer than usual for me. Perhaps I am worried that this medication is not working when intellectually I know it is too soon to tell. Perhaps it is the realization that even if this medication or ones in the future work, the boys will never have normal lives. Other families can look into the future but we cannot.

A couple people have given me the "buck up" line. Said in a nice and well-intentioned manner but basically a "you need to pull yourself together, look at the positives and be happy for your kids." I totally agree and am not offended by that at all. I want everyone to know that I am trying and am not quite sure how to do it some days. I repeat the bible verse, Philipians 4:13. Anyone, anyone? Yes!! I can do all things through Christ who strengthens me." That verse is what keeps me going on many days. I am always thankful when the power of that verse overcomes the visuals of my boys physical symptoms of aging.

Still rambling....I took the kids to the pool yesterday afternoon (apparently my rain dance did not work) Although I have avoided the pool for most of the summer, we had a really good time. It is difficult to see the other kids with the stark contrast in appearance between Nathan and the other kids, it is also nice to see Nathan acting just like the other kids in so many ways. It really normalized things for me yesterday.

Doesn't it always come back to the concept of normal for me? Growing up I always felt abnormal. Now we are one of only five families to ever deal with this diagnosis!! Turns out going to kindergarten with a hole in my neck (tracheotomy) and being the only kid in school without a television was the most normal part of my life! Isn't life funny?

So for now I am looking forward to the results of the first clinical trial through PRF. No one knows when they will be made public, but I am really expecting them to be positive and provide more hope for the future treatment of this disorder. These kids (not just mine)are so precious and deserve to live long lives and experience everything others experience!!

He'll pass with a push!

I am continually amazed at how Mark handles things. I feel so fortunate because this is not something you know about a person before you marry. I did not know that he would love and adore his children regardless of biologal relation, gender or special needs. I did not know that he would discipline them the way he does and support me in the ways that I discipline. I didn't know he would change just as many diapers, take kids to daycare, give baths (more often than me)and do all ten medicines for our children in the morning and at night. I did not know that he would put himself in charge of haircuts and bloodwork because he knows how painful they are for me. I did not expect him to want so badly for me to go full-term with Bennett just so I would be fullfilled. These are things that in your heart you know when you marry, but you can't be sure until you see them for yourself.

This past weekend was our 11th wedding anniversary. We didn't do much to celebrate because of our trip we were able to enjoy in May. To be quite honest the milestone put me in a little bit of a funk (as if you hadn't noticed). I guess it is just reflecting back over the last years and realizing all the painful moments we have been through. I hope that we can continue to go through this all together, supporting each other. Mark has proven time and again that he is willing to do just about anything to make me happy and I hope that my sadness at times does not discourage him. (I say just about anything because Mark has been clear that he would prefer to poke his eyes out than go to a Tim McGraw concert. He did, however, wait with me for over an hour after a Conan O'brien show so that I could see Conan up close and shake his hand...that is true love!)

When I brought Mark home to my parents house for the first time, we were sitting on the porch swing at the end of the evening. In front of Mark, I jokingly asked my mom what she thought of him. My mom's response was "He'll pass with a push." (Nice Marge) Little did I know then what tests my dear sweet Mark would pass without the slightest bit of a push.

I'm alright

I'm okay. I went to our Firstgiving page yesterday and looked at the donations from everyone and the messages that people left. They lifted my spirits. Everyone donated because they believe that a cure can be found. If everyone else has hope then I can have hope too. Then I went to the PRF website where there are various articles about the science behind it all. It is all so encouraging.

Thinking back to my pregnancy with Bennett, I never even considered that he would have the same condition as Nathan. Yes I worried but it did not really seem possible. I really believed in this invisible limit of things that people can go through. After thinking we had reached our limit with infertility, I was sure we had met it with Nathan's condition. But Bennett's birth was timed perfectly one year prior to the enrollment in the clinical trail. It allowed us the relief of an accurate diagnosis, gave time for a petition of the IRB and soon enough we were particpating in a clinical trial. I have to think that Bennett's birth allowed all that to happen.

I am baffled by the way that my perspective changes from day to day. The circumstances do not change but for some reason my view of them changes completely. Mark says this is normal and to be expected which is very sweet. It is not fun though and when I am down I just long to be back up, above water where I can at least breathe and go about taking care of my family. I guess the fact that a change in circumstances is not the cause of the change in my persepective means that I have some control. I have the choice to be positive. I have been following another mom's blog for almost a year now. Her son died at the age of three after a lifelong illness. She has an amazing strength and her faith in God and has been an inspiration to me. She recently talked about the monster of 'wanting what others got' and how if you focus only on that, you are unable to see what God has laid out for you. I struggle with that one more than most parents of special needs kids it seems. I like to make excuses because our situation is different with two kids, progressive, fatal, the constant visual reminders, yada yada yada, but the truth remains that I with God's help can make the best of this. I guess some days I will be more successful than others.

Thank you for supporting us and listening if you are still there. I think I would continue this blog even if no one were listening but I appreciate if you are reading.

swallowed

So I continue to be swallowed up by this grief. It envelopes me and suffocates me. It fills up every teeny tiny space around me. I have been here enough to know intellectually that this will pass but in the middle of it, that concept is hard to fathom. Plus I always know it will be back. I try to fool myself into thinking that I keep things normal for the kids and I do my best. I am not curled up in a ball in my room. I am not crying in my pajamas all day. But they must know. They must sense how slowly I move, how messy things are, how quiet I am and how much television I let them watch. Somehow I made it to work today. I don't know how. I want to go outside and hide in my car until things get better. But things are not going to get better. I have to make them better. Somehow I will make it through the day, but how will I make it through life knowing that my kids will not live through adulthood. Yes, I am still hoping these clinical trials will yield positive results which will ensure a better quality of life and a longer life. But how much longer? five years? ten years? Is 30 really better than 20? And what will 30 look like if we make it there? Will they be sick and frail for those last years? Sometimes it is too much to think about. I wish Mark and I could meet at home and just be together in our pain. Altough it would certainly be comforting for me, I know it is not the way to deal with things. I know I need to keep plugging away at my day.

uggh

Nathan just put on Bennett's 0-3 month shorts and is wearing them around with no complaints. I was already having a bad day. Of course watching Octomom on Oprah with her fourteen healthy children doesn't help. Mostly it is just the pain of watching Bennett's appearance change the same way Nathan's did. Before he started changing so much I could be in denial, but now the signs are more and more apparent. I know that people go through far worse. I know that other parents have children who cannot walk or talk and some have even lost children. I should be grateful for what I have, the ability to hug my kids and watch them being so full of life. But on some days, it is so painful watching my little boys lose their hair and not get bigger. Today is one of those 'some days' and I am just paralyzed by this all.

PS

Oh and still no teeth for Bennett!! He continues to cruise steadily though and I got some new sneakers for him while thrift shopping. At first he hated them and cried but now he seems to like them! Tonight when we were playing with friends, I held one hand and he took a couple steps. Slow and steady wins the race right?

nothing to report

Sorry I have not blogged recently. I really have nothing earthshattering or inspirational to say (not that my previous blogs have been so great). My mind is a jumble of thoughts, sadness, anger, hope, confusion and the list goes on. I have things that I want to share about our lives and our situation but I can not seem to get the thoughts organized in writing. I will say that I have been busy busy shopping yard sales and thrift stores and selling on Ebay. It really occupies my mind and makes me happy. It is difficult to explain but I appreciate my dear husband putting up with all the Saturday morning yard sales and the piles of junk......oh and his willingness to meet random strangers in parking lots for Craigslist transactions.

These past couple weeks I have had this feeling of peace that I should just enjoy the kids, make their lives the best they can be and that God will take care of the rest; the rest being the healing. Then these past couple days the despair creeps back. It may have been when someone at work told me their young daughter had her baby boy, healthy and full term. Uggh why does that get me every time? I imagine them leaving the hospital together 7+ pound baby in hand. I am so sad that I never had that experience. I'm sad that I had to have the alternative, leaving the hospital without a baby twice. (Leaving the hospital with Libby without going through the pain of childbirth was pretty cool though.) In addition to new grandmom at work, it is often the hair loss or the wrinkly skin that causes me become discouraged. I feel like their hair is getting thinner. People ask me if it is more difficult or easier with the second child. In some ways it is easier but in the area of hair loss, I think it is worse. I think because with Nathan we could always explain it away but with Bennett we know what it is and we know what the eventual outcome will be. Nathan is basically bald in the back and on the sides. Bennett has some major bald spots on the sides and back.

The kids had bible school last week. Nathan had a great time! There was one little boy at VBS that seemed to be particularly fascinated with Nathan. He was always turning around staring at him. Even in the final picture of the whole group, the kid is turned looking at Nathan!! sighhhh.....In the place where I was last week, my thoughts were 'oh well, it's only temporary. In a couple years he will look more normal'

And that's another thing!!! (see I told you I couldn't get my thoughts organized) Do you realize how much we talk about appearances? We talk all the time about how beautiful this kid or that kid is, or how much we look like family members. It stinks to know that my kids are not and will not be beautiful in the way that 99.9% of the world defines beauty. We try to teach our kids that beauty is on the inside but we still go on having beautiful baby contests and complimenting each other on our kids appearances. Of course I do it all the time too.

That's about it. Nathan is continuing in his class at Little Wonders for another eight weeks thanks to a scholarship that was offered to us. We are so thankful because he love love loves the class. It is awesome to see him so happy and having fun.

So sorry this is so rambly. I wanted to get something down in writing to let everyone know how we are doing but I couldn't seem to organize my thoughts.

A few random pictures!

Bennett at the 4th of July parade with the Chessires!

Bennett sleeping in the high chair at lunch today. Nathan and MeeMaw Falcone at her birthday dinner.

Nathan at the Phillies game with his Daddy tonight! I am so glad he took him. He was planning to take Libby but Libby threw a fit about something miniscule so Nathan got to go. Mark and Nathan do not get a chance to do a lot together. Looks like he is having fun!! Mark texted me and said Nathan's occupational therapist from school is there so they waved to her. I am so happy they are having a great time!

One of those days

Often this seems to be more than I can bear and today is one of those days. It pains me to see the signs of aging in my boys, the stiff necks, constipation, wrinkly skin, bulging veins, leathery skin, age spots and most troubling, the difficulty getting around because of stiffness. It is difficult enough for us when we have to deal with it at age 50 and 60 let alone age four. Once is difficult, twice is unbearable. The only good thing is, this is all they know. I have always thought of Mandibuloacral Dysplasia as a lesser form of Progeria. We wanted the boys to be enough like them to participate in the trial, but not quite as bad, not quite as rapid. The more we learn about the boys, the more similarities we find. Nathan's baseline MRI shows that the blood vessels in his head have begun to show the same characteristics of children with classic progeria, no more and no less than a child his age with classic progeria. Bennett does not show those signs yet which makes me feel pretty helpless. Can't we just stop it now? Obviously that is the goal of PRF. And I continue to be amazed at your generosity through the ONEpossible campaign!


Unfortunately, I have been thinking a lot into the future lately. I know I said that last Saturday night at my family's house was a night to escape our situation; however, it was not. I did not want you all to think I cannot enjoy and appreciate the small moments in life, because I can. But the progeria diagnosis is always there. Last Saturday, it was wondering if we will ever have a house full of grandchildren. Coming from a big family, I love the chaos of a house full of people! I can see how happy my parents are when we are all together enjoying each other. Will we be left with one child? There, I said it. Mark does not like when I say things like that, but I had to get it out there. Not that there is anything wrong with having one child. It's just that when you have three, one seems way too quiet. I do not do well with quiet. So lately I have been obsessed with whether or not we will have grandchildren. I know we are most likely not going to have biological grandchildren. I can deal with that but Libby has already informed us that she is not having any children. Lets hope she changes her mind (after she turns 25 at least).


Reflecting back over the past couple of years though I have been realizing how far we have come as a family. Just knowing the diagnosis is HUGE! Even though it is a crappy diagnosis, it is better than the wondering. Little by little, Libby is learning that her brothers have something different and have special needs. We are still tiptoeing around her in some areas such as the lifespan, fatherhood, etc. but overall I think she understands her brothers are different. Slowly but surely we are learning and accepting the special needs of our boys. Even though I have these moments and these days, I am still moving forward. And I need to remind myself that I am doing a good job at this. We are straddling the typical kid world and the special needs world and trying to find some kind of normal in the middle. I think we do very well at that.

Ooh Aah!

This is Bennett's new word! Just in time for July 4th weekend. I have no idea where he heard this but it began last night and it is really cute. He has said it about 100 times already this morning.

Last night we went to my parents house for dinner(oh, there he goes again-ooh aah). My sister Donna and her children were visiting so four of the five of the sisters were there and some of the kids. We had such a great time hanging out with them and the kids had fun playing with their cousins. My niece Allison is 4 months younger than Bennett (adjusted) and is of course walking everywhere. It is difficult seeing a typical child Bennett's age but I am still on my kick of coping through hoping that my boys will get better (some may call it denial but it is my coping mechanism for right now). Anyway, the night was magical, everyone talking and laughing while the kids ran around the yard, completely putting our 'situation' out of my mind. It was the kind of night you always wanted for your family. They lit sparklers and Pop Pop set off several fireworks for the grand finale! On the way home we listened to Sam Cooke and oohed and aahed at four more fireworks shows along the way. The perfect end to a great evening!

Now I remember...

Now I remember why I have a hard time taking the kids to the pool. Yesterday I took the kids to the pool for the first time this summer. I forgot about all the little boys that are there! It is so hard to see the little boys jumping off the side of the pool. At the pool, the contrast between Nathan and other little boys his age is striking. With his wet hair, his bald head is even more apparent. His skinny, bony body even more obvious. It made me crazy wishing Nathan and Bennett did not have this condition, as if I could 'will' it away. The only way I could cope with those feelings yesterday at the pool was by convincing myself that they will get better. This medication has to work and help them to gain weight, grow hair, grow taller and be more like their peers. I can accept that they will not be fully cured but I need for their conditions to improve so that the gap between them and their peers closes or at least says the same. I cannot fathom them getting worse and I cannot fathom them dying in their early twenties. These two have such great little personalities and deserve to share them with the world.