Those who are difficult to love (Baby Zee is HOME!)

Tuesday, December 9, 2014

I saw a quote on Facebook once and it stuck with me but for the life of me I can't find it now. I went ahead and made it look legit and pinteresty....heck maybe I said it in the first place. Who knows. It went something like this:

I wanted to give you all an update on Baby Zee, and I thought of this quote. I had planned to write about how kids "like him" can be difficult to love and then I was going to try to guilt you in to stepping up to the plate to help care for "the least of these". But here is the problem....

He is not difficult to love.

He is difficult to transport (oxygen tank, ventilator, pulse ox monitor, portable suction machine, emergency "go bag" and all his g tube stuff. Oh and a diaper bag....don't forget that part).

But he is so easy to love.

When he wakes up every morning, his eyes get wide and he studies my face for a second before his whole face (I swear he smiles with his WHOLE FACE) lights up in the biggest smile as if to say "It is you again! You are still here! You are taking care of me again today! I know you!"

Circumstances can be difficult when he is having problems, or the power goes out (that is a whole situation), or his machines are acting sketchy or he is sick. But all kids....all people have difficult circumstances. His just look a little different than most.

But he is SO easy to love.

released from the hospital!
He came home from the hospital on November 24th. Exactly 10 months after he was born and he spent every day of those 10 months in a hospital bed. Now he is with a family. People ask me often, "will you adopt him?". I don't know. Only time will tell. But I sure hope so....

because he is so easy to love.

Radko (Lili's baby), Baby Zee and Jojo

Happy Thanksgiving from the "triplets"!

Thanks for letting me share,

when being archie's sister isn't easy

Monday, December 1, 2014

I have written before about Ace's anxiety and her worrying about Archie. She worries about him so much and she has very much taken on the role of his protector. I walk a very fine line every day between wanting to praise her for always sticking up for and watching out for him, but also trying to avoid her taking on adult roles or stress that a six year old should not have to deal with.

Last year after school, I picked them both up in the carpool line every day. They would sit together and wait for me. Except for on some days if Archie was still working on something, or if he was having behavior issues, he wouldn't come out as early. And I knew as soon as I saw Ace's face walking towards my car if it had been one of those occasions. She would come out with tears streaming down her face, sobbing. Couldn't catch her breath. 

The first time it happened I was all, "what in the world is going on?" It was like slow motion as she walked to my car practically hyperventilating. Every bad thing that could have possibly happened ran through my mind. Then a teacher helped her in, and explained to me that Archie hadn't made it to the carpool waiting area yet, and she was upset and scared. Talk about a mom heartbreak.

We waited a minute and then Archie was shuffled to our car by his aide. He hopped in and immediately asked, "why Ace cry?" She couldn't talk, but leaned over and wrapped her arms around him and laid her head on his shoulder. It was as if she thought she would never see him again and was overcome with relief when she finally did. She was doing the whole gasping for air cry, so I pulled the car over and climbed in the back with them. I held Ace and tried not to let her see my own tears. Archie was beyond confused. Begging her "no more cry, please, Ace!"

That happened on and off for the rest of the year. And no matter how many times I told Ace to please not worry, she reacted the exact same way every time it happened.

She used to regularly express her fears of Archie having to go back to Bulgaria. She would cry and tell me she didn't want him to have to go back. She was always needing me to reassure her that he would indeed be with us forever. I think she understands now that he is never leaving, but every once in a while if she hears something or sees something that makes her mind go there, she will ask me to promise her that he will never have to go back.

Sometimes being Archie's sister is tough. I think siblings of kids with special needs are some of the most amazing humans there are. It is a whole different world. So much of who she is has been shaped by being Archie's sister.

Of course, I want Ace to be a kid. And to not have to worry about her brother every second. And we are getting there as they get older. Slowly but surely. It involves a lot of talking, reminding, and reassuring.  But she will always protect him and have his back. And that is okay with me.

Thanks for letting me share!