In Lieu of Flowers

So we are finished with all the formalities of the viewing and funeral for Memaw. It still seems so unreal to me. It seems like she will walk through the door and say "Helloooo" in her New York accent that she never quite lost. I am regretting that we let some of those mother-in-law/daughter-in-law issues get in the way sometimes but I am so happy that we spent so much time together with the kids. I knew she was a big part of our lives but could never have imagined the huge void she would leave. It seems so strange having all these family gatherings without her mingling and chatting with everyone. She was such a social person and would have loved having all of her family and friends together, especially to be able to show off her grandchildren. Under her profile picture on Facebook she had written, Grandchildren A+ in my life. Love to Libby, Nathan & Bennett. So Pop Pop decided that in lieu of flowers, donations could be made to the Progeria Research Foundation. Although I feel a bit selfish having donations made to the charity that benefits my kids but I agree that it is what she would have wanted.

Speaking of grandchildren, the kids attended both of the viewings, the funeral and the burial. Bennett was delightful and quite the little star. He is at such a cute age and with the sparkle in his eyes and dimples he is quite irresistable in my opinion. He also happens to give the best hugs and kisses. Libby and Nathan proved a bit more challenging but we felt it was important for them to be there. Thank you to all those who took turns taking them outside for walks and snacks. Libby asks questions non-stop!! They are all perfectly good questions but left little time for my brain to reflect on what was really happening. Nathan is Nathan. He is pretty clueless but such a sweet sweet sweet little boy. The finality of Memaw's death has made me more determined than ever to fight Progeria. And the big news.......Bennett has a tooth!! Aunt Andrea discovered it at the viewing on Sunday night. We are pretty excited!

So now, I am trying to get everything done in one day for our Disney trip. We are leaving tomorrow morning. We will take lots of pictures and post them. I cannot imagine how we are going to pack all of the activities into one week. The place we are staying, Give Kids the World appears to be a vacation destination in and of itself. With indoor/outdoor pools, sprinklers, playgrounds, character vists, miniature golf and more, I am quite sure our kids would be satisfied if we stayed there the whole time!

Golf MeMaw

I don't know how to write this post but want to let everyone know that Mark's mom passed away yesterday. No, she wasn't sick for a long time. Yes, it was sudden. Yes we are shocked, stunned and devastated. She had lived with a heart condition since adolescence and despite having two artificial heart valves and a pacemaker she was busier than many. She spent a lot of time with the kids and loved being a grandma.

Golf MeMaw's car is parked in front of our house. Last week she went to Abington Hospital for a doctor appointment and was admitted due to fluid retention. On Friday she had a procedure to put in a stint and they were able to alleviate some significant problems with circulation. On Sunday she was walking around but by the next day she was on a ventilator and dialysis machine. She had developed an apparent infection which they never found. Yesterday the family made the decision to take her off life support. She passed on peacefully within a few minutes. I cannot express how shocked, stunned and saddened we are. It is all so surreal. She was a very young 65 and so much a part of our lives. Last week she was getting Libby off the bus and this week we are making arrangements for her funeral. I feel for Mark, his sister and his father. I also feel for my kids. They are struggling to understand why their prayers were not answered in the way they wanted them to be answered and why God chose not to make her better. They will miss her deeply as we all will. We still planning to go on our Make a Wish trip to Disney next week. It is actually good timing and a good distraction for all of us.

BBSF

Today I took Nathan to his class at Little Wonders. He absolutely loves Little Wonders and looks forward to it all week. It is very expensive but understandably so because of the staff to child ratio. We would not have been able to do it again this session if it weren't for another very kind benefactor and we are very grateful. Nathan has become so much more confident in his attitude and his movement since he began going there in May. Mr. E does a fabulous job working with the kids and makes sure each child is participating. I enjoy it because in addition to watching Nathan as happy as can be, it is nice to be in the company of other parents of special needs children. Although their children have different special needs, none of which are medical issues, being in the company of other parents who know what it is like to have a child who is non-typical is really comforting. Here is a picture of "bumper cars" today.

As a special treat, after Little Wonders we went to Panera Bread for some bagels. I decided to slow down and enjoy the morning with the two big kids. Here they are sitting at Panera. This is my cell phone so its not the greatest but I thought it was cute.

Anyway, to the point of this post.....At breakfast Libby told me that her and Nathan had a secret handshake. How cute is that? They have formed a secret club and it is called BBSF. Any guesses? Best Brother and Sister Forever! They are not biologically related, they are different genders and differently abled but they can still hang together. For me watching them play is one of the best parts of being their mom.

teeth etc.

Gums: I am growing weary of Bennett not having teeth. He will be two in December and I am so tired of seeing those vacant gums when he opens his mouth. Being on the periphery of the Progeria world, I heard a rumor that there is a little girl with progeria who is four years and still does n0t have teeth. I was hoping he would get them earlier than Nathan did due to the medication but that has not been the case.


Well check: Nathan had his 5 year check-up on Thursday. He weighed 29.4 pounds and was 38.5 inches tall. Dr. L was happy with his growth in the last year. I mentioned to Dr. L about Nathan's loud, mouth breathing and he suggested we go see an ENT again. It is difficult to know what to brush off as Progeria related (or MAD related) and what is something separate that should be treated individually. I know that after one of the tests in Boston, they said he and Bennetts adenoids were slightly enlarged so I need to look into this further. If his nose is always blocked and he can't smell, then it would affect his appetite according to Dr. L. Although it may not cause him to put on a tremendous amount of weight, any little bit helps and it could eliminate the dinner time drama!! Seeing Nathan laying on the exam table in his little underwear, is shocking. The disorder is so glaring then, the blotchy skin, hard patches of skin, the veins and just the lack of fat is really sad. It's like the disorder is smacking me in the face. I long for him to have a healthy, filled out body of a little boy and hope that we get there some day (before heaven I mean).


The stares and whispers: This is another difficult thing. Nathan was standing in the middle of the aisle at the bookstore today and an older couple walked past. I turned around because Nathan was lagging behind (by choice not by limitation) and there was the lady whispering something to her husband and pointing at Nathan. He's my son but even if you are not his mother or father, he is a little boy. I don't understand how people can be so insensitive. It is not the first time and of course it won't be the last but it is difficult to witness. It really makes me tense when we are out and about. I am just waiting and wondering with each person we pass, how are they going to react?