Just Me and My Little Sister

I remember when Lil was born and we used to read the book Just Me and My Little Sister.  My favorite part was when they go to the park and the little girl (the new baby) falls off the slide, she gets muddy and miserable and cries.  Her older brother picks her up, quickly soothes her and takes her home.  Chris always loved this part of the book when Lil was a infant.  He often asked when he would be able to take Lil to the park by himself.  These days I have been watching their relationship grow and grow and become more mature.  They are very similar you see. 

They both love to build, they love cars, trucks, and they both love Star Wars.  Lil loves 'girly' stuff too but she is the kind of chick who will run around the house in a princess dress and camouflage hunting boots with a battle ax in one hand, light saber in the other on top of being dressed to the nines in princess jewelry.  Their intelligence runs along the same vein as they will attend to a task until its completion no matter what and they are especially in tune to figuring out puzzles or, more so, the way things work. This is a picture of Chris sorting his candy on his first Halloween- self directed!


Since we have returned from our trip, Chris (little Chris that is) has been an absolute mess.  I have not seen him act out this way since he was two years old.  He has been throwing things, screaming, screeching, crying hysterically at the drop of a hat and all day long.  My little boy is in pain.  Something is wrong.  Chris and I have been pulling our hair out all weekend trying to figure out what to do with him.  Chris is a very emotionally intelligent little boy and because of that he needs to know about Lil's disease but we have to walk a fine line between telling him enough and telling him too much.  Having our five year old friend Lucy die had a profound effect on him.  He talks about her all the time.  We do have therapists that the twins work with at the hospital while Chris and I are working with own support group.  We had a special meeting with them before the trip in which they told me they could have video taped Nettie for the perfect therapy session but Chris was a tough nut to crack!  No surprise there!  After many failed attempts at intervention this weekend father and son went for a long walk in the woods but no go.  Finally last night Chris and I were at the end of our proverbial ropes. 

I was in the bathroom with Bubby (AKA little Chris) and he had just gotten out of the shower, a shower which I had screamed at him through when all I wanted to do was let him wash his little body and wrap him in a warm towel and help him get his little boy pjs on and then snuggle him until his pain went away.  But all he was doing was pushing us away and pushing us away and pushing us away.  On top of all this, I have not gotten to the wrap up post of the NIH visit but there are some things hanging over my head that I am running away from. 

After a lot of yelling I finally got him to give in to cuddling in my lap and trying to talk about what is bothering him and it hit me like a ton of bricks.  I finally blurted out, "Are you afraid she is going to die?"  I felt his body go limp and the racking sobs begin.  We both sat on the steamy warm bathroom floor and cried.  I can't take away his pain and his fear.  I can't tell him she will not die.  Although I can reassure him it is not going to happen anytime soon!  We talked about the beautiful Lucy, we talked about the support group, we talked about Lil and her disease.  We talked about our fears and how much we love each other and how much we love our family.  Then we stood up and walked out of the bathroom. 

When I put him to bed we talked some more and this morning even more.  Have I made progress?  Will we keep talking?  I don't know.  One of our new CCF (support group) friends has a son who is losing his fight with a rare disease at 18 years old.  He was not supposed to live past 8 years.  He has an older sister who went away to college this summer.  His mother shared with me that the sister had an awful summer; she described her as a bear!  Mom could not figure out why and it sounded exactly like my weekend!  Finally his sister screamed, "I don't want to leave ___!!  How will I know how he is doing?  How will I know his levels?  What if I miss something?!?!"  Then she just started crying.

If a college student who has been dealing with this her whole life and has an amazing family does not have the skills to deal with these emotions, how can I expect my five year old to?  Having a chronically ill child is not only about taking care of that child, not even close.  It is about fighting off demons and creating celebrations out of thin air for everyone.  It is about making other people understand those demons and celebrations because your support people become your lifeline.  And sometimes it is about letting go of people who break down the delicate fortress you are building no matter how much you used to love them because if you are not with us, you are against us.  Thank you to all of you who are with us. 

My baby boy needed me, he needed all of me this weekend.  I came downstairs after putting him to bed.  It was one of those times when it took every once of my energy to put one foot in front of the other and I even paused a few times because I could not find that energy.  Then I sat on the couch with my husband who made me smile a little.  I ate three ice cream sandwiches which are a big treat for me and my heart swelled with the idea that I was able to afford them through your generosity.  And I thought of you; I thought of the Dragon Mothers from whom I draw strength and I knew I could sleep that night and wake up the next day with new ideas to help this family grow and thrive... not just get through the next day.