My reactions to God's plan

So much to say…so very little time.


I really don’t know how you mommies do so much. Treatments, housework, work, care for and hang out with your kids, have time for yourself, blog, sleep…oh yeah and spend time with your husband. (And why can I always find time to eat???) Some days it seems like there isn’t enough time for just the absolute necessities. Working full time again this summer is really killing me! I have just had to admit I cannot do it all and work full time. (Let’s be honest, I can’t do it all period!) The bad part is I am kind of wishing away the summer because of it. STAY IN THE MOMENT ALISSA - This is my mantra - This breath right here!

The boys are on a sleeping strike right now so I think that is multiplying everything. No one is napping - haven’t been for DAYS. And they are staying up so late. My last post was the beginning of it. Thank God I embraced it and let it be – it is now happening every night. Cole napped for the ride home from Iowa City yesterday – and that’s all. He didn’t fall asleep last night until 10pm. The great news is that he is now sitting through his vest pretty nicely. If we put in a Baby Einstein video he’ll usually just sit on our lap and watch it for the 30 minute treatment. Such a HUGE relief. But, we haven’t quite conquered the nebs (hypertonic saline) while he’s awake. I think it makes him feel too claustrophobic. That will be next on our list! The other miracle that I truly am grateful for is that they aren’t crabby or sick – they’re just not sleeping. When they’re awake they are FULL of energy…running, laughing, playing, screaming!!! I just wish I had the energy to keep up with them. I am so blessed to have PJ, mom, Bob, Nina and Granddad, etc. It truly takes a village!

I have to admit I woke up Monday on the verge of a panic attack. It was sitting in my chest – right there in my throat – just threatening to burst out. The dialogue of disaster just kept playing in my head trying to convince me that something horrible was about to go down. I’d had night sweats and nightmares all night. I was on the brink of that very familiar spiral down…all consuming anxiety which leads to debilitating depression. The fight was on – keep myself out of that place. This became my mission and priority for the day. Sad and embarrassing - but true. Over the past week I have realized that my drive or need to write this blog wasn’t what I was worried it was – it is actually quite the opposite. It is not so I can try and convince the world and myself how successful I am and amazing my life is. It is to show my Shadow and my Light. To expose myself for who I truly am and still be able to accept and love myself at the end of the day. For those of you who happen upon this and judge me - I accept that. But I do dare you to take a closer look and see what it is about me that you actually dislike about yourself???? (I’m reading The Shadow Effect – can you tell?)

Okay so back to what’s REALLY important! Cole’s visit to Iowa City (University of Iowa Hospital Pediatric Cystic Fibrosis Clinic) went great. Chaz said he didn’t want to go and would rather stay and play at Oma and Papa’s so it was just Pj, Cole and myself. Cole has slowed down a little on the growth/height chart…but he’s still in the 90th percentile which for a CFer is absolutely amazing. He weighs 28 lbs and is 15 months old. He’s a BIG boy. This is the longest we’ve ever gone between appointments so I was a bit nervous about how he’d do. Now that he is over a year old we only go every 3 months instead of every month. He did great though. He cried a little when we had to do the throat culture but that was it! The numbing cream on the arm worked so well that he just sat on Daddy’s lap for the blood draw. (She had Toy Story 2 on to distract him.) He drew on the chalk board in our room and flirted with the nurses a bit. My sweet baby is truly amazing! We won’t get the sputum culture back until maybe Friday so we really don’t know anything else right now. That is really the big determining factor on how he’s doing and what we have to do. If he cultures a bacteria he will need to go on antibiotics. We just pray he doesn’t and especially pray he doesn’t culture one of the really bad ones…pseudomonas or MRSA. He’s cultured each of those once before about a year ago. First was pseudomonas I think…then within a couple months was MRSA. The good news is that he hasn’t cultured either since then. They both can be very hard to get rid of. So we just cross our fingers and pray!!!!!!!!!!!!! (Also pray that it isn’t just hiding down in the lungs and we’re not seeing it but I don’t believe it is because he’s had a bronchoscopy and CT scan since that showed no bacteria or inflammation.)

The eye opener at the visit for me was the Doctor’s surprise in how well Cole is doing. I didn’t fully realize the complications that his tracheomalacia can bring into play with the CF or how little of a chance there is that it will fix itself with time. I could tell the Doctor was very surprised Cole has been so healthy and is not coughing more and having more problems with clearing his mucus. The tracheomalacia tends to trap it down in there and cause more infections and inflammation. So far so good. But we are having a consult with the surgeon at our next visit to learn about the surgical procedure to help correct this and find out if Cole is a good candidate for it. It’s kind of hard to admit to myself I guess that the Doctor thinks this may be necessary in the future…but the truth is he wouldn’t be having us go through this now if he didn’t want us prepared for it….my stomach turned just typing it.
I sat in the back seat of our Camry – squeezed in between the 2 car seats and loved on CoCo the whole way home! He is such a miracle!!!!!

It’s so strange but I feel like sometimes I am in denial about it all but other times it feels like all I think about…I guess I never really let myself believe how bad it could be – but why would I? Would it really make anything any easier if that happens? I swear my anxiety disorder feeds on this like crazy if I allow it to. I’m just still learning how to stop it from doing that. The only real answer is LOVE LOVE LOVE!