New normal

So apparently my new normal is so insanely busy that I can’t even sit down on the computer and post for a minutes, muchless check my email. Well, check I can do, but respond…that would be too much.  Gabi is doing really really well.  She certainly keeps me on my toes between all of her meds and feeding routine.  And I am JUST starting to let her cry for more than a few minutes.  My other kids, I had no problem letting them cry it out, but this precious girl, oh no…. she’s my angel.  I know in a few days/weeks/months, I will have created a monster , but right now, she is my baby girl!

I am anxious to get PT, OT and speech started next week. I still push her just enough to get her tired.  I can’t believe she is already 7 months. She sits in the bumbo chair or even just in my lap.  Her trunk muscles are so weak that she is no where even close to sitting.  She is just starting to bat at toys and become aware of her feet. This morning she actually shook a rattle intentionally  when I put it in her hand.  She loves her brothers and sister.  She watches them run around and laughs when they approach her and say “boo” or “blaaah.”

She has been to the pediatrician and the home nurse has come over a few times to check in.  They all agree that she looks great.  I have even taken her out to the store a few times and she loves adventures!  It’s interesting the looks I get when people peek into the car seat to see a cute baby and the first thing they see is her G-tube hanging down.  Their reaction is a slight pause and “oh she’s so cute,” when I know they are wondering what is wrong with her.  I just politely say thank you as they back away as quickly as they can without being rude.  I don’t find it offensive in the least bit. I am sure most people just dont’ know what to say.

There have been MANY times where I see a handicapped child and just keep walking and try not to stare.  But I do think about the parents and the child and used to think, ” I could never do that.”  or “I feel so bad for them.”  All those parents are just like me: shocked, saddened, angry but so full of love for their children that they don’t care what anyone else thinks.  My perspective has totally changed.  Everyone has a story, everyone has pain in their life, and if you don’t, then it will come.  I am so grateful that my life has changed because of Gabi.  I won’t lie, it is overwhelming and the fear and selfishness creeps in, but my life is so much for the better now.I cherish every moment, even when my 4 year old Thomas is driving me CRAZY….he is a gift, like all children.

I have so many friends that need prayers and support that I am trying to focus on them and give back to everyone that has helped us.

Thanks for checking in. The Danstrom’s are doing excellent!

Oh- the Wings of Angels Endowment fund in Carsyn’s honor is holding their first fundraiser on March 6th. It is going to be just outside of Milwaukee and going to be a blast!  If you want to attend, let me know, or if you have something to donate for their silent auction, let me know that too. A gift basket, or movie tickets, or a something hand made are great ideas.  All the money goes towards building a garden at CHW where families can go and find some peace when their child is sick.  After that is built, all the money will go towards the CICU, the 3rd floor, at CHW.

Love,

Teri