Friday, July 02, 2010

I've Had My Fill

Wow, summer is cruising right along and I’m alright with that. I enjoy fall & spring much more. Really, you can only take so many layers off and then there you are…stinky, beet red and miserable ;) No matter the season I’ve missed you all! We’ve had some good times and some really bad times since my last blog.

I don’t think I’ve talked about my new nephew, Mr. Braxton Lee Mitchell. My best girlfriend in the world gave birth under some very stressful circumstances earlier in the month. She was blessed with a very premature, possibly 22 week baby at the time. Braxton was born on June 7, 2010 and was 1 lb. 1oz. and 10 ½” long. Tricia experienced a serious case of toxemia and is very lucky to be alive.

Braxton was probably more like 24-25 weeks at birth and actually was doing a lot better than mom at that time. Recently he has had a setback due to some potential infection (perhaps a picc-line was not kept clean) and things that should have happened when he was first born have threatened his well-being recently.

She has been through a lot in the last few months, losing her mother & a surprise pregnancy tops the list. I hope to be down there very soon but am trying to wait until I can at least hold the baby. She is a good mother and learning quickly to take life day by day. When she can figure out how to get pictures from her camera to her computer I hope to share, he is very cute!

Some good times:

*I enjoyed being part of a parent panel as part of a VISAA (hopefully I got the acronym correct) class on vision impairments and early intervention offered through UNC – the class was at the Anchor Center and it was nice to share what it is like to be the parent with educators, therapist and aspiring students. I drove to Denver all by myself, got a coffee and relaxed for a few hours. What a treat, it has been some time!

*I had a wonderful experience with a respite provider Tuesday. She shadowed me for free and is willing to watch both of my kids for nearly $4 less/hour than the state will pay her for a Medicaid client. We really, really need this. I don’t want to jinx myself so I will blog details later. It has been 4-years in the making and I feel a sense of accomplishment just being able to trust someone I don’t know all that well with my child, in my home. Our family’s situation is very intimate; I usually don’t get too detailed about our struggles and will continue to reserve that right while finding respite.

*I met another really nice super-mom at the park; a friend of a friend. Our kids have a lot of common needs so I hope to be able to hook up and swap strategies, stories, play time, etc. You can never truly walk in another’s shoes but it is refreshing to discuss the UEAB-3 gene and the mysteries surrounding our children on the fly while next to the Big Thompson Spray Park. We also share a geneticist and neurology team. Good stuff.

The family (sans grandma) made it to Chautauqua in Boulder on Saturday for Magic Carpet, the Young People’s Concert sponsored by the Colorado Music Festival. A big thank you to the Anchor Center for providing us tickets!  Big intentions for a fun day were squashed with a little stroller accident on the way to the show. This was a good time turned bad with quite the ripple effect and it has been a loooong time coming.

Ava fell out of the sit & stand, bonked her head and injured her right ankle. We hung at the show but it turned out to be a pretty hectic day. We took x-rays of her ankle on Monday and by yesterday we confirmed it definitely was NOT broken, phew.  I was livid with Joe, aka stroller operator. Big accidents often bring big emotions to surface at this house…I must say it was a weekend for reflection & hopes of change for Joe & I.

We have been struggling to function not only as husband and wife but as individuals. I have found the end of my tolerance rope – nearly five years after we migrated from a typical life to an extraordinary family. I really am doing the best I can to provide for our children daily. I’m still not sure if people want to blame me for Ava’s differences or are simply to self absorbed to take a moment to understand or empathize with the dynamics of this house.  I'm certainly not waiting for the world to change, either.

I miss time to keep close friends near, shopping alone or with out stares and my career that I, yes, I spent a lot of money to validate. I miss spontaneity in forms other than epilepsy and special needs. I hate that most don’t understands what I’ve sacrificed to play this role and even more I hate being accused of denying who Ava is…another highlight of my week.

I feel bad for my husband, his family and their bag of problems but need to start thinking about myself and my children. I no longer feel obligated to be their scapegoat; I didn’t raise him so I’m not sure why I am to blame for their relationships with him. Besides, he is not a puppet with my hand up his butt. I’d venture to assume he doesn’t like being viewed in that light either. I’m a product of tough love and my opinion is there in lies our differences.

It fells good to finally spew this awful, messy stuff. It is sort of like that crude oil bleeding from the bottom of the ocean…my own Pandora’s Box of bullshit. And really it is some pretty petty shit at that; in the scope of my life challenges anyways. The best I can hope for is to have a fair comparison of obstacles when being criticized or judged.

Wish us luck, our road is certainly not paved or equipped with a GPS system but I trust this giant sink hole has helped fuel a sense of renewal for this ride. Be safe and enjoy your 4th of July!  A big thanks to all of our present and past armed forces members-you are certainly appreciated.

"Faith is the bird that sings when the dawn is still dark." R Tagore


Angy and John said...

You two are amazing parents! No one, no one knows what you deal with on a daily basis. All you can do is your best and that has to be good enough. You both have made incredible scarifices in the name of your children and I see that. We love the Jakshas and are here for support- whenever...all those other jerks...there's the door...don't let it hit you in the ass on the way out!!!

HeatherS said...

Hey Sweetie:

Wow, sounds like a lot going on. We love you and are here for whatever you need. Bring the girls over and we'll let them run wild while solving the problems of the world.

Hang in there Sweet Friend :)

Robyn said...

You are the best mother and advocate that I know. You amaze me with your positive outlook on life. And for someone to judge-blows me away. You do what you need to do for your family, be sure to thoroughly enjoy every minute of your respite care, and if you need a ear or a shoulder, I'm here for you!