So Much Hate

I am overwhelmed by all the darkness in the world. So much hate... so much anger. Loved ones hurting loved ones and friends hurting friends. Nothing on the TV but death, war, sex crimes and serial killers. Politics and money corrupt every work place. People have become inferior to each other... it's the survival of the fittest! Everyone for himself at any person's expense.

I've lost faith in humanity.... again.

The husband is away and the baby is in bed. I'm soaking in the shower , alone with my thoughts after an emotionally draining work day and thinking to myself: how am I going to bring a child in to this world in the next 6 months? What was I thinking? What if they grow up to hate me? What if they don't learn respect? How will they treat others and how will they be treated? How can we set a better example?

The overwhelming fear is about to gobble me right up when a voice comes into my head and reminds me.... I don't have to do this alone.

Why do I try so hard to manage the things that are beyond my control? We get one life on earth. We get one chance and this is it. This world is too big for me and I was not meant to walk it alone so why do I try? Why do I hold everything on my shoulders & let fear and worry steal my soul?

If ever there was a time to step back and let God take the wheel, now is that time. For me it starts with prayer. All we are told to do is believe & to love. How can that be so hard? Well for some of us it's VERY hard. Maybe... just maybe if I can find a way to let Him, God can show me how to get a handle on this. Then I can live & teach by example.

And maybe that will be enough.

Never a dull moment

So much for sleeping in on my sacred Saturday morning. Nick wakes me up yelling "get up, Get UP, GET UP!". Turns out little miss Cali had spastically yanked her entire G-tube button out during the night. God only knows how long it had been out for and we've always been instructed that should it ever get removed, it must be replaced immediately to avoid closure (G-tube incisions close quickly and require surgery to reopen). After multiple failed attempts we decided it was time for a trip to the ER. Of COURSE De Paul Urgent Care in Morgan Hill was closed (go figure) so we hurried over to Good Sam in San Jose. While on the road I managed to get on the phone with Cali's interim GI who instructed us to get there and get something in the opening RIGHT AWAY and wished us the best (not reassuring).

Upon arrival, the front desk nurse sits me down and begins with her onslaught of questioning about Cali's information and medical history. I interrupt to explain the situation and ask if we could please do this later as we needed to get a stint or tube in place immediately to avoid closure. She curtly told me no, that the paperwork must get completed first. Nick walks in from parking the car & asks if we could get a doctor in to address the situation. She spins around in her squeaky little office chair and retorts, "No sir and if you keep asking this is only going to take longer". I then ask her what they do if someone comes in having a heart attack? 

..."Well, then we take them back and treat them! But that would be considered an emergency. This is just an URgency". (OOooooh-Em-Gee! This woman just barked up the WRONG tree!)....

Long story short:

After a good 45 minutes of BS, boiling blood, Nick exiting the building and my bickering with the senseless doctors... they finally managed to fit a size 8 tube through the opening. Her button was a size 14 so the hope is that the current "custom rigged" tube (not a legitimate piece of equipment for this type of thing) will wiggle around enough to loosen the opening in order for her GI to get a proper size button in place Monday. 

What was I just saying about how grateful I am for modern medicine??? Don't get me wrong, I know how fortunate we are to live in this century but how is it that professionals like these aren't more properly trained to diffuse and address these situations? If ever this happens again I'm having the doctor call the ER prior to arrival to make sure they are READY for us. 

Good news is Cali was a trooper. She didn't like them attempting to insert the size 14 button but other than that she was smiling through it all. I don't know how in the world she didn't wake up with that bulb being yanked through the small opening in her belly but I'm glad it didn't rip, bleed or cause her too much discomfort. Now lets just pray Monday's visit to the GI goes swimmingly! 

Thank god for pizza and wine. Perfect way to end a shitty day. Just glad my baby's okay. 

Negativity Strikes Again

On days like today, God feels so far away... and yet I think I have no one to blame but myself for the way I feel. It's a dark, icky, yucky, anxious, empty feeling. Thank goodness not all days feel like today!

I feel so ridden with negativity that if I don't get it out somehow, it's going to eat me alive. I feel guilty & selfish for being so negative because I know that I have so much to be thankful for and yet I can't help but feel like I'm at war with myself sometimes.

Some days I get angry... I feel resentful towards LIFE because it doesn't stop for me when I need it to. LIFE doesn't give a shit about when sadness or tragedy strikes...it still requires me to get out of bed in the morning, paint on a happy face and go about my responsibilities. It doesn't allow me to stop and take however much time I might need to rest, mourn my losses and pull myself together.

I have a beautiful house, a precious daughter, a caring family, great neighbors, good friends, food on the table, a stable job and a husband that loves me. I live in California where I don't have to fear things like religious intolerance, being shot at in the midst of war or finding clean drinking water... Yet I find myself getting angry and consumed by the rat race. I get frustrated that I have to work full time to pay for the things we've chosen to invest in. I get frustrated about medical bills, insurance policies, the price of gas, the demands of an 8-5 job, not enough time for myself to make healthy meals & exercise when I need to (or the motivation to do it when I can), family drama and illnesses, the hardships of friends...you know...LIFE. The same things that all of you deal with on a day to day basis! How dare me gripe about it, right? How selfish...

I would expect that anyone living this "American Dream" must fight these feelings from time to time, right? Or am I alone in it? Am I just so spoiled and ignorant that I can't always appreciate things like I should? ...Or am I just so busy and tired that I don't have time or energy to enjoy what I have? And how much of it is my fault? What can I do to pull myself up by my boot straps & find contentment in the life that I've chose and the cards that I've been dealt? Some days I feel the sun shine on my face, I hold my daughter & I sit with my husband and feel so much joy for what I have. Everything else just all feels so petty and irrelevant. I wish all moments felt that simple.

I think the bottom line is.... I miss my dog.

News we can't handle

After reading blogs posted on Facebook by other CDC mom's, I've been inspired to create my own blog.

Tonight I enjoyed a peaceful moment rocking Cali in her room as she slept and snored heavily on my shoulder. I looked at the "Joey Pump" as the IV bag of formula dripped through the tubing and directly into her stomach through the "Mic-Key" button in her abdomen. 10 months ago if someone in the NICU had told us that this was what was ahead for our little girl, I would have said I couldn't handle it. Yet here we are and it's just another perfectly precious moment on another typical evening in the Rose household.

I truly believe that there's a reason we don't know the things that are in store for our futures. I am SO grateful that we didn't do prenatal testing when I was pregnant. Had I known the diagnoses that far in advance, it would have made those 9 months full of worry (as if they didn't have enough already just with being pregnant and hormonal!). I would have been consumed by my fears and wonders of what my daughter would be like and how we would handle her disabilities as parents. What would it do to our marriage? What about money?...blah blah blah...

There's no point in wondering what will be and why it will be (though I do it all the time). It's not for us to understand. The fact of the matter is that things all happen for a reason. It may sound hokey & I'm sure others would disagree... but this is what my personal experience has taught me. What we think is best for us certainly isn't always the case. And what we think is "bad" for us is still what makes us who we are and keeps the universe in balance. In the end...all things work together.

I wouldn't trade my daughter or anything about her. She is perfect...missing chromosome and all. It is part of what makes her my little Cali-girl :). I can't imagine it being any other way. I look at my friends' kids that are close to her age and it all seems so strange to me the things they can do that Cali cannot. She is what we know and she is our "normal" :).

All this being said...I'm sure glad I don't know what the future holds. Good or bad, it will all come in strides. Some days will be harder than others.... and some days will be rainbows and butterflies. It is what it is and in this moment, I'm thankful for every bit of it. Ask me on a bad day and my outlook may not be so bright. Regardless, these are the things that I believe in the depths of my heart.

Baby is crying now ...Mommy is tired.
Goodnight!