Beach Vacation

I wrote this earlier in the week but have not gotten around to adding the pictures. 

We had an awesome beach vacation this year!  Last year we forgot a bunch of the food we had packed, the house we rented was dirty and then I wound up in the hospital.  Needless to say it was not the greatest vacation.  I really appreciated being healthy this vacation and still don't think I realized just how sick I was last year.  Two of my sisters and their families went to Ocean City Maryland and we follwed them renting a condo in the same building (We were invited, honest!) Anyway, it was so much fun being with my sisters, brother-in-laws and nieces and nephews.  Libby and her cousin Claudia (who is also 8 years old) had such a great time playing together.  That was one of the big draws for us to vacation together.  There is nothing better than kids playing with cousins and since we live far apart from each other, we like to take any opportunity to get them together. 

Nathan, Libby and Bennett love my sisters two girls, Margaret and Ginny.  The girls put in lots of time with the kids, playing in the sand, taking them down to the water and carrying them (Yes, another big draw!).  Nathan is absolutely enamored especially with Margaret.  She ranks right up there with Taylor Swift!  One of the funniest things Nathan said this week was when we were in our condo between activities.   Nathan asked "when will we be wherever Margaret is?" Regardless of what he was doing, he wants to be with Margaret!

Nathan in the water.  He loved it and spent much more time there then we expected.  He has problems watching his surroundings and expects people to get out of his way so several people did knock him over!  They would help him back up, he would look annoyed and confused and then get back to whatever it was he was doing. 

Bennett was not so sure about the water....or the sand.  He seems to have some sensory issues and screamed when we sat him in the sand or water.  He hates being messy but I'm  not sure then why he sticks food in his ears and down his shirt at mealtimes! 



Some boardwalk ice cream!!!

 

Nathan and my neice Allison.  Nathan was great on the beach even though he did not like the sand.  He sat eating, reading or playing with his magna doodle.

<>We actually had such a great time at the beach that none of us wanted to return home.  I guess that is an indication of a good vacation.  It was so nice to be able to relax and not have to be anywhere at a certain time; to not see all the things in the house that need to be done and to be with family.  I had one bad day emotionally.  I think just seeing my two year old niece hop around so effortlessly is hard for me.  I tend to forget how limited our boys are, seeing how they struggle just to get in and out of a chair or off the floor and the aches and pains that Nathan has and shouldn't have at age five

Margaret and her fan club!

Fortunately some fabulous news awaited us when we got home!  A friend was able to get tickets for our family to go see Taylor Swift when she comes to Philadelphia next month!  We are so excited for Nathan!  We told Libby first because I knew she would have a hard time with this.  I assured her that we did not seek out tickets for Nathan's favorite singer and that we will look into getting tickets for her favorite band.  After some tears she was really good about it and helped us break the news to Nathan.  Nathan had suspected something was up and got his goofy "in love" smile on his face.  He hopes she sings "You Belong with Me." 

Weighty Issues

If you know Libby at all you know that she lives with the weight of the world on her shoulders.  We noticed anxiety in her long before we learned the word Progeria.  At the age of ten months she began shaking and crying at a birthday party when the candles were lit.  Over the course of the next several years we have discovered and conquered many different fears.  Many things along the way have added to this stress and anxiety for her, the most significant being her brother's diagnosis and the death of her Meemaw Falcone.  In the two years since Bennett and Nathan's diagnosis I have been in denial about the affect that it has had on Libby.  (I need to write a whole different blog about that.)

She is confused about many things and these past few weeks we have had some pretty heavy discussions.  I am realizing that many of her behaviors are from that confusion.  Recently it has been adoption issues and her brothers.  She is struggling to understand why her birthmother chose adoption for her and I am struggling to provide answers.  "She was a teenager and wasn't ready to be a mom" is no longer satisfying her curiosity.  When I choose my words I feel so much pressure to say the "right" thing wondering how her eight year old mind will process this all. 

With all of this Libby has begun having physical symptoms of anxiety.  They began the day that Meemaw Falcone passed away six months ago.  The more and more fundraising we do, the more I have to explain Progeria to Libby.  But of course I am still holding back.  I feel like I am keeping a big secret from her because she cannot handle the truth right now and I'm not sure when she will be able to.  I feel a tremendous weight on my shoulders, partially because of the responsibility of helping her process adoption and Progeria and partially the guilt of not being able to be completely honest with her right now.  This week I told her that Progeria means that Nathan and Bennett have a lot of symptoms similar to people who are aging.  As soon as it was out of my mouth I knew that I had said too much.

Yesterday we talked about some of her physical symptoms of anxiety and she was looking for reassurance that she was not having a heart attack.  We reviewed her clean bill of health, an echocardigram that she had at one time and the fact that only people who are older have heart attacks.  She quickly spun around and said, "but Nathan and Bennett won't have a heart attack right?"  Oh my gosh this is all so much.  She has so much on her little shoulders.  Then she remembered that Meemaw Falcone passed away as a result of heart problems.  I just pray that we are able to guide her through all of what life has thrown at her.  I know she will not be unscathed but I hope that she will be stronger as a result.

A couple more points from Boston

I forgot a couple more points about our trip...

• Bennett is now swallowing pills! He does not have quite as strong of a gag reflex as Nathan so he is able to have us put the medicine in his mouth, drink water and swallow the pill. Obviously he does not really get what he is doing. I think much of pill swallowing is psychological so I assume we are starting this before that becomes an issue. I'm curious if he will go through a phase in which it becomes more difficult but this is huge for us! It means no more mixing medication, which means we are not being exposed to the medication, thus eliminating the need for masks and gloves! Like I said, this is HUGE!
• One of the things that got to me this trip is that after 2 years of knowing this diagnosis we still don't really understand it. When I say "we" I mean us as parents. Yes we know the boys have a mutation in the zmpste gene and that children with classic progeria have a mutation in the lmna gene. Yes we know that the result is the same so the treatment would be the same but we still do not truly understand the science behind it all. It is so complicated and beyond our scope of comprehension. It is understandable.  If it were simple, we would have a cure but it is still frustrating as parents. I feel like after two years the doctors are still trying to explain this to us and speaking for myself, I am still not truly getting it. I feel a little dumb not being able to grasp this after so long and so many explanations.
• And the big news of our trip is that there is a new medication that the boys will eventually be getting.  This news was not public until last week.  Dr. G says that children with non-classic progeria are less likely to benefit from this medication {because our boys do not have a build-up of progerin like the children who have classic progeria}.  My response to this was 'That's fine!  I like those odds!!'  We were told that our chance of getting pregnant was less than 4% and we got pregnant not twice but three times.  Unbeknownst, with each pregnancy we had a 25% chance of having a child with progeria and both of our boys have progeria.  So I am hopeful about this medication.  

I have more updates but have not had time to update in a week!  Nathan graduated from preschool!  Everything went well although he was disappointed that he didn't get to wear a uniform (cap and gown).  He wore a sash and check out this smile! 

Lots of the kids that graduated have special needs and it was so neat to see how far they have come physically and emotionally in the several years Nathan has been at UCP.  When I sat there and realized how hard those special kids, their teachers, therapists and families worked it brought tears to my eyes.  Off to Kindergarten!!  Yayyy Nathan!!