Wednesday, June 1, 2011


I think we make the best out of our reality most days but there are some days that the simple little things hurt. We have not had a nurse for Bubba in over five months now. We are trying desperately to fix this problem but for now we just make the best of it. I am grateful that I have such AMAZING in laws that watch the kids so that we can get much needed date nights here and there but for the most part there is little respite from our demanding job of being Bubba’s parents. Don’t get me wrong I LOVE being Bubba’s Mommy and wouldn’t want it any other way!!! I have to admit though that I am a little jealous of friends that can call the local awesome young woman and have her babysit at last minute notice. When my baby sis and mom where here I asked baby sis if should would feel comfortable babysitting the kids so we could sneak out for a bit. Her response was honest and pure…. “I don’t think I can…. I am too scared.” The reality is that Bubba’s care can be scary. All of the many night time medications, having to hook him up to a machine, and heaven forbid he start to have seizures or vomit. She told me… “it’s been a while since I have had CPR training”, my eyes were opened to the deep and heavy responsibility that people view taking care of Bubba can be. I guess it is all so “normal” and second nature to me that I forget that our reality isn’t “normal” after all. For those like my mom and baby sis that only have the privilege of seeing him once or twice a year it is very SCARY because so much changes between those visits. This is a reality that I am fine with, I don’t mind missing an occasional party or going weeks with out a date night because finding a sitter to fill in for Pa Pa and Nana is impossible but last night was an exception. Last night was Regan’s violin recital, they were even playing at a local high school!! Here was the dilemma, Regan wanted EVERYONE to be there. Daddy was lucky enough to have the night so we knew that he HAD to go. Then she asked her Nana Pa Pa {who was out of town} and great grandma Jo to go as well. I knew that we could not all attend. You see, the recital started at 6pm, Bubba’s medication time. He has a very strict bed time schedule and you can not break from it. So, I told everyone that they must go and that I would stay home and take care of my sweet Bubba. I am blessed to hear her perform every week at her practices.
Jason took Regan out on a special dinner date before the recital and got some much needed and very special Daddy/ Daughter time. He was so good about sending text messages the entire night. “She is so confident and not nervous one bit.” “She just finished her duet and she played perfectly!” We are all so proud of her! Daddy took video and pictures so that I could enjoy watching my baby girl playing on the big stage but I have to admit it just wasn’t the same. I wish that I could have been there. I am grateful that Daddy, Nana, and Great Grandma Jo got to go and would not change that for a second!!!!!!! I just wish at times that my reality was a bit more flexible.


arroyo fam said...

Congratulations, Regan! Playing on a stage in front of lots of people is a BIG deal. Way to go! Maybe one day you and Abby can get together to play a duet. = )

Sue said...

Laura and I would have come! Next time, give us a call!!

Rochelleht said...

You are such an awesome mom! I love your unselfish attitude and willingness to do anything for your kiddos. Thanks for your example.

Susan said...

Congrats to Regan for her non-nervous, perfect performance!
Is it okay for me to say I'm really, really sorry you didn't get to see that performance in person? Because that's what I feel. But I also know that you are completely dedicated to what Bubba needs first, and I admire that with every part of my heart. You are the true spirit of grace, giving up what you wish you could do, willingly, to do what you MUST do. Bubba couldn't have a better mom.