Kids Klubhouse

Since this blog has become more about my mental health and less about the kids, I will say that I have been in a funk the last few days. I am wracking my brain trying to figure out what it is that is funkifying me. I have considered the first trip to the pool with the kids last week. It was as difficult as I remembered. Given so much time to sit and watch other kids and thinking, it makes me very sad. I saw lots of boys playing in twosomes and threesomes and found myself wondering if Nathan and Bennett will be included in one of those little groups. I compare their size and ability to others their age. I watch other kids do a double, triple and quadruple take when they walk by. I find myself being jealous of the families of two boys and a girl who walk in all looking alike. I desparately wish my boys could have the longer surfer hair that is in style for boys right now. But that doesn't usually affect me for a week so I was off to consider something else. Nathan has been saying a couple things about having special needs lately. He was looking at baby pictures and noticing that his veins weren't sticking out then. He has been talking about how Bennett will eventually look like him, with no awareness that this isn't the way it is supposed to be. Then I made the mistake of weighing Nathan one day. Although he has gotten significantly taller, he has not gained any notable weight which means that he is overall skinnier. That knocked me down for a few days.

Then I was looking online at some stuff about Mandibuloacral Dysplasia. I was trying to remember which kind they have, A or B. In the description of MAD Type B (the one they have) had the words "premature death" as a symptom. As the boys get older and I see my neices and nephews getting older, I am starting to panic. I look at teenagers and wonder where we will be when the boys are that age. I used to be able to justify that there was time between now and then but it seems like the time is slowly closing and the time for us to find a cure is shrinking. Then there is the possibility that my funk is due to the kids being out of school. They have been home for a week and although delightful, they fight like crazy. I just want them to get along and I know that it is normal but I wish they could just be nice to each other and take turns. I guess I am used to getting my stuff done rather than refereeing. Then there is tomorrow. Nathan and Libby are going to attend a local camp that is four days a week from 9-12. Nathan will not have an aide like he does at school and all of a sudden I am nervous. I felt like having an aide was not necessary for him but now i am second guessing myself. I spoke to the director a few weeks ago and he was the nicest and sweetest guy. He assured me that Nathan would be fine. Apparently he lived behind us until last year and saw Mark taking the boys to school in the morning. I am so used to people being paranoid about Nathan's safety, worried about liability etc that it was such a relief and a surprise to have someone just reassure me that they would make it work. So now my brain is racing about all the dangers in groups of kids. So I am not sure what has me in this funk. It could just be a general malaise about the boys and their condition. I just hope I am able to pull myself out of it soon. Then I stumbled upon this picture of Bennett from exactly one year ago. He has lost so much hair in just one year.

Schools Out!!

I cannot believe that school is out for the summer!  It honestly feels like Nathan just started Kindergarten and now he is already finished! 

Off to First grade and Fourth grade!  I cannot believe it!  My favorite part of the day is when they get off the bus!  They are so excited and full of energy, ideas and chatting away!  I try to savor these moments because I know at some point they will not want me at the bus stop!

Challengers

About a month ago we heard about a local baseball team for children with special needs.  The team is an official Little League sanctioned team and is open to kids ages 4 and up with special needs.  Unfortunately by the time we learned about the team, there were only two games left but we are so glad we did.  Nathan played baseball last weekend and the previous weekend.  He was by far the smallest of the bunch but had a great time.  The games were adorable!  Watching those kids play and be a part of something when they are often the ones on the sidelines watching siblings was amazing!  I am so glad that we live in an age when kids and adults with special needs are given so many of the same opportunities as their typical peers.

Many of the kids had Downs Syndrome, Cerebral Palsey or Autism.  Nathan kind of fits into the middle somewhere between typical Little League and Challenger.  Its kind of the story of our lives because the boys have only the physical issues.  Mark and I don't discuss the boys too much because we deal with it so differently.  Its good that we deal with it differently.  Its what keeps us both standing.  But after the first game we talked about how Nathan did not really fit in with these kids.  Mark said that this is the reason why he does not find our situation as difficult to deal with as me.  He is grateful that the boys only have the physical limitations, that their health is relatively stable and they are happy kids!  It really helped me see things from his perspective and I totally agree with him.  There is that "fatal" part of course which is unfortunate but I am so glad that the boys are happy and able to interact with us and love us! 

So anyway, I think we enjoyed watching Nathan play as much as he enjoyed playing!  It was so cute! There were many people there helping and volunteering their time.  It was pretty amazing! 

Coping Skills

I have not written in a while.  There has been stuff to write about but for some reason, I haven't been able to sit down and focus. But here are some things that have been swirling around in my head. 
A couple weeks ago the kids and I saw an aquaintenance of mine.  She had not seen the kids in almost a year.  She was very sweet with the kids, fussed all over them, made a special effort to include Libby in her fussing.  The next time I saw her alone, she started talking about seeing the kids, how she had to catch herself from fussing over the boys and not Libby.  Then she started talking about how seeing the kids reminded her of how tough it must be for me as a mom.  She asked me how I get out of bed and do it every day!   Wow!  I think I know what she meant.  She meant that she admires me for digging in my heels, pulling myself up everyday and going through each day.  Perhaps she should avoid motivational speaking and greeting card writing.  But even knowing what she really meant (or hoping I knew) it stung because I knew that the appearance of my kids and the changes that have occured in them in the last nine months, caused her heart to go out to me as a mother.

It made my heart sink and it stayed there a little wounded for a few days.  The effort of running errands with three kids is alot for me.  Not just because Nathan and Bennett both need help getting out of the car but also just because all the emotional stuff really saps my energy and leaves little energy for the day to day things some times.  I had been so happy to have done several errands that day with all three kids but her saying these things kind of tarnished that happy memory; knowing that these things were swirling through her head when I thought we were having a typical interaction....I know that the boys appearance, spending time with them or seeing them refreshes people's memories about their condition and inspires them to help which is great.  Its a catch 22 really.

Anyway that brings me to my point about the boys appearance.  It makes this unescapable for me.  I see it every day, every minute of every day.  The things that I enjoy doing, when I am happiest is when I am thrift store shopping, ebaying, doing crafty stuff (right now its spray painting), yard saling, working, hanging out with girlfriends and dates with Mark.  Of course sometimes certain reminders make me sad but for the most part, these are the times I can escape.  I feel guilty that I am happiest when I am away from my kids.  Its not supposed to be that way!  Intellectually I know there is nothing wrong with this and I know that I need to keep up with these things in order to continue being a good mom to my kids, but it still feels wrong.

I guess I am just not sure why I am not used to their appearance by now.  Why does this look still affect me on a daily basis.  Why does it remind me daily of their condition?  When I look at Libby everyday I see a beautiful little girl, my daughter!  I don't look at her and think, oh she looks healthy or oh she looks like her birth mother (alright some days maybe I do).  So why am I not getting used to my kids appearance.

I keep telling myself that the advantage is that I have continued to invest in myself, pursue my interests and focus on our marriage.  That has left a lot of house stuff undone but we are trying to get around to that now.  I am hoping that it will make that transition to empty nest easier for us because we will know who we are outside of our children.  I am so happy that Mark understands that I need to do these things in order to stay afloat and I have been able to understand that I need these things in order to function better as a mother and wife.  Now, off to spray paint whatever is not moving!