Nathan's handwriting.

Nathan's handwriting has really improved since the beginning of the school year.  With his fine motor skills in question, we were not sure of Nathan's ability to write neatly.  One is never sure what is a boy thing and what is a special needs thing.  Its always a delicate balance.  Nathan copied this from his library book onto his white board!  Forgetting to take off his underwear before putting his clean pair on over top?  That is all boy!  And he didn't even notice he was wearing two pair of underwear all day until this evening when he changed into his pajamas.   

Spartan Stroll and other things

Yesterday our local high school held a fundraiser for PRF in honor of Nathan and Bennett.  It was organized by a high school service group and this is their second annual walk.  This year they chose PRF after learning about our family through Make A Splash.  We were so honored.  It was a beautiful day and lots of people came out for the event.  We know that our friends and family are supportive of us and having them come to these types of events is always wonderful.  Seeing Libby and Nathan's friends and family begin to attend these events is even more amazing.  Nathan's best friend, R (a girl of course) came with her family and Nathan ran around with them for the entire two hours.  R is so sweet and has Nathan wrapped around her finger.  One of the best things about raising awareness is that the elephant in the room is no longer.  This is especially the case with Libby's friends and her friends parents.  It's not like I can introduce myself by saying, "Hi my name is Phyllis and my two sons have Mandibuloacral Dysplasia which is a rare form of progeria....."  Despite being below the radar type of people, it is good to have it out in the open.  And I am so happy that people support Libby and Nathan by virtue of them being Libby and Nathan and not by virtue of being our children.  Does that make sense?

So lots of good things are happening.  Last week my Mom came and was a Mystery Reader for Nathan's class.  He was thrilled beyond belief!  We had conferences for both Libby and Nathan last week and both kids are doing well.  Nathan has some trouble focusing and likes to chat.  We worked out some details regarding getting off the bus, a social group that he was mistakenly enrolled in and finding alternatives for indoor recess.  I would think that outdoor recess would be problematic but it turns out the indoor recess is worse.  The gym is apparently filled with running screaming kids!  Libby's conference was also good.  She is quiet and a little on the shy side but participating and meeting all of the academic requirements.  Everyday Math curriculum is not her
friend but that is a whole different story.  Bennett is borderline qualifying for early intervention services.  He demonstrates the required 25% delay but just barely. 

Pictures are from Nathan's classroom when MeMaw Allison came to read!
Despite all of these good things, I have been having a really hard time lately.  I have not written much about it because it has all been said before.  Looking at previous posts has been therapuetic for me recently.  When I have been in the deepest darkest places, I have been able to express my feelings so much better. 

I feel like there are some things that I just cannot say.  Things that would make me seem like a horrible mother.  More than two years after the diagnosis, I cannot believe that from a 25% chance we have two out of two biological children with this rare disorder.  I still cannot wrap my brain around that fact.  I still cannot wrap my brain around the fact that we will not have little boys and girls and grandchildren that resemble us.  I don't know why I am so stuck on that.  It seems so superficial and self-centered and but I guess what I have learned is that I am more superficial and self-centered then I care to admit.   

I am back to wondering what our boys would look like if they did not have Progeria.  I am wondering what they will look like when a cure is found for Progeria.  Will they be able to blend in with other adults?  What if Progeria is cured but they the unknown long term side effects cause something equally as bad?  Many days all I can see is that one tooth of Bennett's glaring at me or Nathan's nose or the lack of hair on both boys.  I wish with all my being that Nathan did not need to have an aide in school or that little blue mat under his bum.  Part of me thinks that having another child who is typical like Libby would allow some of the hurt to go away.  Would it allow me to be happy for others who deliver full term babies and have little boys and girls with rows of neat little teeth and chubby cheeks?  I will never know as we are not having another child.  I am hoping this all gets better as we move beyond the baby stage and our friends move beyond the baby stage.

My other ramblings are that Nathan and Bennetts limitations are minor in the grand scheme of things.  They can walk and talk, ride the regular bus, go to regular school, but I can't seem to stop focusing on the things they can't do like play sports, get on and off the bus independently, go up and down the steps independently and on and on.  Instead of being happy that Nathan has a friend at school, I secretly wonder if Progeria is dictating his friendships and wish he could be friends with boys as well as girls.

Last kid blues..

I am going through the last kid blues.  I'm sure much of this sadness is normal but part of it is because I really wanted to have a healthy biological baby.  Letting go of something so significant and something that many people take for granted is so hard for me.  Although I am not a huge fan of the baby stage, watching Bennett grow up {cognitively at least}and knowing it is our last is hard for me.  Bennett is almost three years old and we have never before had our youngest be so old!  By the time Nathan was two years old, we were getting ready to have Bennett.  We are moving forward, out of the baby stage.  Yesterday I put a bunch of the baby stuff out for donation pick-up, a high chair, books and toys we have had for nine years...it seems so weird that our family has outgrown them.  It doesn't help that this is the month I was due with the very short pregnancy we had in the Spring. 

I love that all I need to pack are wipes and a couple diapers.  I love that all my kids can walk and talk.  I am happy to be done with bottles and baby food and infant car seats but it is also bittersweet.   

It's complicated!

Oh gosh.  This is all so complicated.  I am always very cautious about putting too much responsibility on Libby.  Like I said in previous posts, I am there to put Nathan on the bus and there in the afternoon when he gets off the bus.   He is getting a little bit quicker and has even jumped off the last step by himself.  Libby usually carries his backpack on the bus but only after she offered to do this for him.  When they get home, I meet them at the bus, take his bag from the bus driver and help him down the steps.  Libby INSISTED that she could get him off the bus by herself.  I fought this for several weeks and Libby reprimanded me everytime I met them at the bus.  I had such a hard time letting go but finally I did after talking it through with them, Libby gets the bag and gets off first, take the bag to the curb and help Nathan off the last step.  They have been doing fabulous at this which is a great comfort to me.  That way if I would happen to be late, I know they can get off the bus safely.  So anyway, I digress....

Nathan fell on Saturday night.  Right here in our kitchen and while we were sitting right there.  He has been so much better about falling and hurting himself but the problem is that if he gets off-balance he wipes out.  Of course we were worried and he was screaming.  He quickly developed a huge knot on his forehead. Libby started screaming and crying about hating having special needs brothers and no one pays attention to her etc.  She used to do this all the time but either she has matured or the boys don't hurt themselves as much.  So I went to the living room to talk to Libby and find out what was really wrong.  She was crying and saying that she hates having special needs brothers, she wishes she were an only child.  I quickly told her that it is okay to wish her brothers didn't have progeria but it is hurtful to say that she wishes they were not here.  Then she went on to say that Nathan takes so long to get on the bus and that her friends on the bus say that his fingers look like skeletons.  Also, Nathan's aide comes on the bus to help him off and she gets embarrased.  And, every time the bus goes over a curb or a bump she has to check and make sure Nathan is okay.  Ahhh big sigh by me...its so complicated.  I have told her to look out for Nathan but I didn't mean for it to weigh so heavily on her.  I just wish she would tell me these things before they build up in her mind.  So all this to say that I feel so much pressure to say the right thing to Libby.  She is such a thinker and takes things so seriously.  I am always trying to imagine how my words and actions are affecting her and what she will be saying in therapy years from now. 

**I wrote this last week but wanted to talk to Nathan's aid first before posting.  We had conferences this week and I will post on that later!**

Wordless Wednesday