Bus Ride

 Today was the visit to the bus depot for Kindergarteners.  My sister was in town so she watched the other two kids and I was able to take Nathan alone.  I was expecting that he would climb up and down the bus steps (or try at least). But to my surprise they took us for a ride too and quite a long one through the district!  So when it came time for Nathan to get up on the bus, he climbed up all four steps without assistance!  It will be different with his backpack but he did it!  I was so proud of him.  On the way off the bus, he went down three steps and needed a hand on the fourth. 

After getting on the bus we picked a seat and......I cried.  I thought it would be different with the second child going to school but that is not the case, at least for me.  They all look so little sitting in the seats.  Its such a monumental occasion for any child and parent. 

Typical childhood moments like these are so bittersweet for me.   I am so in love with this little boy in his baseball hat and skinny little legs.  My mind then jumps to the realization that I am okay with all of this, his difference in appearance, developmental delays and small stature.  I am thrilled that he can do what other kids his age are doing regardless of the help or modifications he needs.  I breathe a sigh of relief believing that some acceptance has occurred, because its not so bad right?  But then in the back of my mind I remember that part about the "shortened lifespan" which is just a nice way of saying he is going to die at a young age.  That I cannot wrap my brain around.  I love him so much I could just squeeze him.  I cannot express in words how much I want him to grow big and strong, get better and have fewer limitations.  I find him perfectly adorable and loveable and my heart aches for him and the things in his life that are to come.  He is perfect in every way if his body would just cooperate and allow him to grow and fullfill all of his dreams.  We have to find a cure for children with Progeria which is why 'being out their and not loving it' is totally worth it.

Out There And NOT Lovin It!! (long-sorry, skim if you must)

Okay, if you got that the title is a reference to Seinfeld yayy for you!  As I have said before, Mark and I are super low profile people.  We strive to not draw attention to ourselves.  We don't like to ask for help.  Its not that we are antisocial its simply that we don't like inconveniencing others and don't like being the center of attention.  I must admit I grumble when I have to walk up front for communion at church because I feel like all eyes are on me and what if I drop my bread in the "wine" or trip on my way up or my skirt is unknowlingly stuck up in my underwear.  I have improved in this area.  At conferences I am able to walk up front if there are no seats in the back but I'm still lacking the assertiveness to tell the woman/man behind the deli counter that I want my ham sliced a little bit thicker. 

So to say that we are stepping out of our comfort zone is an understatement.  Talking to people about Make A Splash, asking for donations, sending repeated messages to people on facebook goes against every fiber of my being.  But every fiber of my being wants my boys to get better so bring it on!!  Well, not exactly "Bring it on."  I'm not quite that enthusiastic.   The irony of it all is too much sometimes.  This is a girl that didn't want to have a wedding because I didn't want to be the center of attention and now I am sitting down for interviews with newspaper people.  More on that at another time.

So today was not a good day for me.  Nathan and I went to church and then the grocery store.  I really was enjoying being with Nathan.  I love being with my kids one on one when they are not competing for attention.  So in the grocery store, we were having a good old time.  Normally I go to a grocery store about twenty minutes away but I have been trying to stay local so that when people see signs for Make a Splash, they recognize our boys and want to come to the event.  At the checkout we are talking to the clerk and the guy selling pretzels for another worthy cause.  The lady behind us in the checkout line comes up to Nathan and kneels to talk to him, like you would a two or three year old!  There is nothing wrong with this but it is a symptom of his size.  People tend to treat him as if he were much younger-even us sometimes.  Then she says to me, "Does he have Progeria?"  Wow!!  Yes he and his brother have it, we are having a fundraiser yada yada.  Truly I don't even know what I said but I know I had tears in my eyes.  For the last few hours I have been trying to figure out why.  I know he has Progeria.  I know he looks like he has Progeria.  Maybe its because she didn't ask his name or anything else about him.  Its all about Progeria.   I don't think she was out of line in what she said but I don't know why it upset me so much.  Is it possible that I am still in denial as to how different he appears?  I guess I am.  I guess I try to forget about it and enjoy Nathan for Nathan.  Somehow I haven't been able to mesh the two, enjoying my kids, knowing what it means for them to have Progeria and working for a cure all at the same time.  And yes, I guess its about being out there and not loving it.  I prefer to blend in.  As a child it was super important to blend in and be like everyone else.  Maybe I am not self-actualized because I still want to blend in and I assume my kids want to blend in.  For them that will never happen.

Don't judge us...

In addition to the Nintendo DS we got Nathan a water gun. He had to test it out this morning and I thought it was pretty cute!  Mark took a turn too but I didn't get a picture of him.  Actually Mark also took a couple of turns with Nathan's DS already too!

Happy Birthday Nathan!

Yesterday was Nathan's sixth birthday!  We had a great evening.  We took the train down to the city and went miniature golfing in Franklin Square.  It was really fun!  We gave him a Nintendo DS and we gave it to him while we were on the train.  He was really excited.  It wasn't something he had asked for until about a day before his birthday.  We decided to get it for him because Libby has one and Nathan doesn't get to play it too often.
I will post some pictures of Nathan on his birthday but today I am not feeling it.  Maybe it is the idea of another milestone, now six years old with age spots on his arms and neck, running out of time.  Many other moms who have children with special needs talk about how their kids are perfect in every way, down to the things that have occured as a result of the condition.  I don't see it that way.  I want them to be bigger, stronger and be able to pull a golf ball out of the hole on the miniature golf course without getting down on their hands and knees.  I hate Progeria and what it has done to our family.  I often wonder what they would look like if they had not been born with Progeria.  Would they look like Mark or me?  Would they be tall?  How it has taken away their opportunities to be rough and tough boys, playing baseball and soccer.  Do they play with the girls because they like too or because the boys play to rough and are playing different things?  What would their interests be?  What could they potentially be in life?  And the most difficult for me, the fact that they most likely will not have biological children if any at all. 

I know it is not healthy to "what if" but sometimes I cannot help but allow those thoughts in.  I don't do it about anything else in my life.  We have been through so much, infertility, prematurity, niccu and miscarriage.  Any one of those things, never having a full-term birth experience, is traumatic and painful.  But all of those we can move past, but this we cannot move past.  At least I cannot move past it.  It is ongoing, it is lifelong.  Yes, it is what it is a big IT.

I continue to struggle to understand how other mothers of special needs children can be so positive.  Is it because their children's disorder is not progressive?  Most of them do not have children with progressive fatal disorders but some of them do have children with a fatal disorder.  How can they say that they would not change anything about their child's condition?  Its not as if my child has brown hair when I was expecting blonde, or having a boy if you were told you were having a girl  or even adoption versus biological.  I love Libby just the way she is.  I wish she would not have to experience the pain of dealing with adoption issues but I do not wish for her to be different in any way.  I love everything about her and how she came to us.  I do not wonder how she would be different were she born to us.  It is not a thought that ever crossed my mind and in fact it seems weird to even say it now.  I feel a bit ostracized from the special needs community through my own doing.  People rarely want to discuss the pain and hurt that comes from situations like this.  I guess talking about it does not make it go away but it does make me feel not so alone on the rare occasions that I do hear someone talk about the downsides of special needs parenting.   

Yes I love my kids and yes I love them the way they are, but I also wish they did not have progeria.  I'm not sure if this makes me a bad mom or not.  I guess it affects my parenting so its probably not the best.  But how can I fight to cure progeria if I do not hate what it has done to our kids.

Sorry this is so random and confusing.  I am simply trying to make sense of all that goes on in my head. 

Dr. Gordon

Someone commented on a recent post and left a link to this video of Leslie Gordon talking about Progeria and the research that has been accomplished in the last eleven years.  This is a short video and worth watching (my biased opinion of course).  Keep in mind that she began The Progeria Research Foundation after her young son was diagnosed.  Thank you to the reader who shared this link.

Boys Will Be Boys

Nathan and Bennett are proof that boys have a genetic predispotion to be rough and tumble.  I truly believe it is not a learned behavior.  If it were up to me our boys would sit in their chairs watching television, possibly wearing helmets just to be safe!  Obviously this is not the case.  I would prefer they be big, rough and tumble boys but given their physical condition, twiggy legs and fragility, I would prefer they not take too many risks, but they have other ideas.  They run and slam into each other, roll around on the floor and bonk each other over the head with random objects.  They are no where near as rough as typical boys due to their physical limitations but still too rough for my liking.  So after umpteen times of telling them to stop running around screaming, Mark had to separate them and put them in time out this morning. 

Don't forget to purchase your tickets for Make A Splash at http://nathanandbennett.ticketleap.com/make-a-splash-for-nathan-and-bennett/

Taylor Swift!!!!

A very sweet, fairly new friend surprised us with tickets to see Taylor Swift last night!!  Nathan was so excited to say the least.  In the car ride there, he asked Libby three times if his hair looked alright.

We were up very high!  Libby was afraid and freaking out.  Nathan trudged up the stairs slowly but steadily and made it to the top of the stadium all by himself.  (I think I had to take more breaks then he did).  While waiting patiently for Taylor Swift to take the stage, Libby was able to calm herself down.  We were so proud of her.  So when Taylor Swift came on, they were both ready! 

It was an awesome concert!!  Libby was doubtful because TS is Nathan's favorite singer and not hers but once again she was pleasantly surprised! She even admitted that she likes Taylor Swift and that she is a better singer than Big Time Rush!  Wow!!  It drizzled a tiny bit before the concert started and at one point she said, "Look at the sky Mommy.  I think God just decided to make everything perfect tonight."  Yes he did Libby!  It is truly heavenly to see your children happy.  Nathan was grinning from ear to ear and Libby was relaxed and happy like I rarely see her.  She even "danced" a little bit (in between talking nearly nonstop)

Nathan held his hands in the Taylor Swift heart shape for most of the concert!  We had such a great time as a family (minus Bennett), laughing and joking around.  I realized that our friend had given us so much in giving us tickets to see Taylor Swift.  She gave us a break from Progeria and special needs.  Of course it creeps in, at least for me when people stare at Nathan, but those times of laughing together are precious.  It serves to refuel the tank so to speak and give me energy to go forward.   It made me think of all the ways that the people in our lives help us directly and indirectly to raise our children.  Whether it be listening to me vent, praying for us, fundraising for us or sending us to see Taylor Swift, you are helping us to share this burden of Progeria.  So thank you to everyone who supports in so many different ways.  We could not do it without you.  Thank you Katie for a wonderful evening and thank you Aunt Andrea for watching Bennett so that we could go see Nathan's girlfriend!   

My lack of blogging.

I've been trying to think about why I have not been blogging as much this month.  I concluded that it is for several reasons.  One of the main reasons is just being busy with life.  Between Boston, vacation, fundraising, working, selling online yada yada there are so many little details to get done each day.  Secondly we are on the cusp of many things right now, each of which could be an entire blog post.  We are working on our Make A Splash event and the When I Grow Up calendar which is requiring me to do little things like checking our PO box, dropping off letters, picking up donations here and there and emailing.  Each one prompts more questions from Libby about the reason for fundraising and I find myself trying to creatively explain things to her without creating more anxiety for her.  Then I wonder if we are creating the anxiety in Libby by not telling her exactly the full truth.  She is looking for reassurance and I try to give it to her but it is a false reassurance really.  We cannot reassure our kids of anything but in our case this is especially true.  I know it is a process and I cannot satisfy her questions with one or two conversations.  I am happy to take each opportunity, regardless of where we are to explain as much as I can tell her but leaving out the part where we are looking for a cure that will allow her brothers to live past high school.  I feel as if we are on the edge of this breaking wide open.  Libby is perceptive and constantly has her "feelers" out.  She is hypervigilent to the extreme.  She seems to be picking up on the fact that our explanaition of Progeria is not consistent with the amount of effort we are putting into fundraising and the attention we get from people about the boys (ie praying for the boys).  She does not "really get Fighting For Their Future."

Just yesterday she said she hopes that Bennett's face does not change like Nathan's.  I'm not sure if she overheard me saying that to someone or if she came up with that on her own.  Another example of her perceptiveness happened last week in Target.  Someone was staring at Nathan and I turned to meet their gaze, to tell them to stop staring.  Libby picked up on it right away and asked why I was looking at the woman.  I denied it but soon fessed up and explained.  I figured it was an opportunity to see if Libby notices that people stare at Nathan.  She said she does notice but I'm not sure if she does or was just wanted to agree with me.   

Self-portrait

Me and Libby waiting for her therapy appointment and having our lollipops.  We need to help Libby get this anxiety under control and she needs someone to talk to other than me and Mark.  She has been seeing Miss B on and off for almost a year now.  Ms B is an art therapist which is perfect for Libby.  She was previously in therapy and complained and whined about going and talking to someone.  With Ms. B she enjoys the time.  We had not been there in a while because our insurance changed and Ms. B does not accept our new insurance.  Right before her appointment, Libby said she had changed her mind and did not want to see Ms. B.  I never want to force her into therapy because then she will get nothing out of it and she will be resentful and resistant of therapy long-term so I was a bit confused and hesitant.  After much discussion, she said that xx amount of dollars was too much to spend on her for therapy and she felt bad.  She overheard me talking to Mark on my cell phone.  Libby can be a handful but she is very sweet not to mention perceptive.  It was a good reminder for me that she hears and processes everything!