All good things must come to an end

This is going to be my attempt in summarizing all of  the little things and big things my little family accomplished in 2014.  After my discharge from Providence Rehab on November 23, 2013, I came home in a wheel chair to a house that was not quite ready for me.  There wasn't a ramp built for months and  I took my very first steps around Christmas time and delighted everyone. Robert followed suit and took his very first steps on Valentine's Day, 2014.

So, here I sit, proclaiming to the world what I am now capable of doing and admitting the things I still need help with.  I'm fairly self sufficient these days.  I can make my own coffee and use the microwave to heat up anything my little Jacee heart desires.  I can usually fully dress myself except after a shower.  My daily chores consist of loading and unloading the dishwasher (except the silverware).  I recently purchased soap pods so I can wash the clothes myself, move them to the dryer and it doesn't even matter that I can't read because I know how many clicks each direction is for whatever cycle. Nursing duties aside,  I am an excellent playmate for Robert.  Our bedroom door is always open when he's awake because I'm trying to sleep only when he does.   I can also fully lift Robert and carry him from one side of the house to the other! Tickling him all of the way.

Last night it was posed to me, "Jacee, what are your New Year's resolutions?" And I said, "I don't know. I'd like to finish all of the things on my "Jacee can do list.""

So I guess that only leaves checking the mail, putting my own hair up in a pony tail and making scrambled eggs.

Last, but not least, Dan's tinting business has been really taking off and we're all looking forward to the day when that is our primary source of income. Everything I keep on pushing myself to do is for him and Robert, so I'm less of a burden for Dan and the best mom ever to Robert. They both deserve it!

How Angelica Save the Day

To Whom this may concern-

My name is Robert Caldwell and my Mommy is writing this for me because I am only 2 years old. On Wednesday 11-12-2014, a nurse took the day off so my Godmother, Angelica, filled in for the 12 hour-day shift. See, I'm a very complicated little boy and only a skilled nurse is qualified to care for me. I was strapped into my highchair and my 12 pm feeding had begun through my G-tube. I decided I wasn't getting enough attention, and usually when I gently pull at my trache everyone immediately goes berserk! This time, I pulled too hard and pulled the whole thing out.

Angelica tried for seconds...which seemed like an eternity, to get it back in, while my Mommy was crying and screaming, "Breathe, Robert!!" Angelica knew I wasn't getting any oxygen so she immediately said, "Call 911!", which we did. She unstrapped me, stopped the feed, laid me on the floor and started CPR and chest compression until the medics arrived.

Thank you, so much, Angelica. You did exactly what you should have done. It could have happened to anyone and you handled it with confidence, which comes so naturally to you. You saved my life!!

Thank you for sharing your breath with me when I lost mine.

Exciting Update About Robert

On Monday 9-15-2014, Robert's Aunt Arline drove me, him and his favorite day nurse N to an appointment at Childrens Hospital in Seattle. We were initially only there to get his bi-monthly silver nitrate treatment under his traech ties on the stoma. Arline waited outside because she didn't want to distract him. She encouraged me by saying...."You got this Ace, you're his Mamma". While inside, I asked the question on everybody's minds. "When Robert was born, we were told he could get the traech out when he was 2 or 3 years old. Seeing as how he is almost 2, when can we expect that to happen?" At first Doctor P said..."Wow Mrs. Caldwell, I'm surprised you remembered that. I was hoping you were coming to this appointment so I could tell you about the procedure and how it will work". He said, "Robert is an ideal candidate for that surgery and they will start the process next spring." The procedure is very in-depth, while being under anesthesia they will take a piece of cartilage from his rib and insert it into his esophagus to manually widen his throat. The recovery time in the hospital will be 7-10 days. Then he will come home still with his traech and a stent for about a month. He will go back in to be re-evaluated to make sure that the procedure took and at that time the traech will come out. Way to go little man!!!!!

Three years ago today.....



I tied the knot with my very best friend Danimal.
Little did we know, what life would
have in store for us. We have been dealt more trials and
tribulations than most couples our age, but we made it through.
Robert and I are both alive and thriving at home together all thanks to Dan's
quick thinking that fateful July night last year. Together we are the 3 musketeers.
Nothing in the world can ever keep us three apart again. I am so thankful
God wasn't ready to take me and now I am choosing to surround myself with people
that I know are rooting for me to succeed at being the best wife and mommy
that I can be with the tools that I have been given so......happy 3rd wedding anniversary to me and Dan!

One Year Ago Today

“One Year Ago, Today”

08-15-2014

One year ago today, was a very happy and sad day for me.

Happy because I had woken up from a coma to see Dan and Robert looking at me and talking with me.

Sad because…

I don’t know if memories from that day are real, or fabricated from other people telling me about it. I can only imagine people looking at me and saying…Jacee, look at that little boy. You need to live for him.  Against all odds…I made it home and now not a day goes by that I don’t look at Robert and say…”Mommy lived for you!!!”  Again, I am so grateful for my second chance at life. Where I am, still learning, still growing, and now realizing I have all the time in the world, to do so. Happy 26th Birthday to Me!!! Dan, I can’t wait to spend forever with you!!!

Cousin Tina saves the day again!

Yesterday Robyn kidnapped me for a day of fun in the sun at Lake Goodwin. I boasted to her that I don't need sunblock because I really wanted to burn, seeing as how my skin hasn't seen sunlight like that in over two years. I even bragged about way back in the day, when my old step sister, Athena and our friend Bub used to lay on the roof of our old horse barn until our skin, literally, started sizzling. About an hour after laying out, she looked at me and commented, "Wow, Ace, you're starting to get really pink." After that, I allowed her to coat me with spray on sunblock. Lo and behold, she forgot to spray my legs.  And I forgot to remind her.

After finally realizing that I was burnt to a crisp and ready to go home, we decided to go out for dinner with her guy friend, E.  So then we had to run back to my house and change out of our swimsuits and into dinner attire. It was then that Angel saw my burn and covered me head to toe in aloe. As Angel, me and Robyn were running out the door for dinner, cousin Tina yelled at us, "Bring back a tomato!" I didn't heed her warning and we returned without a tomato. Soon after we got home, though, Angel realized, "Oh crap, we really need that damn tomato!" because my legs were sizzling. So I sent Angel to Fred Meyer to fetch me two tomatoes and ibuprofen. Then what ensued next was straight out of any comedy act. I sat on two towels, on the couch, while Angel and Tina each took half a tomato and slathered me all over. As they were both slathering me with tomatoes, I joked, "AAAHHHH, this is the kind of thing that only happens in my dreams".  

Thanks guys, I owe you both big time!!

I'm Alive

To whom it may concern, July 2, 2014

My name is Jacee Caldwell and I am writing this to both thank and hopefully acknowledge everyone who saved my life on July 2nd of 2013 and helped me get on the road to recovery.

I would like to start with the paramedics at the Shoultes fire dept who arrived at our home and took over CPR from my frantic husband.  On that night, our 7 month old disabled son had coughed his trach breathing tube out and my husband and I were in a panic to replace it into his neck as well as his feeding tube from his nose. I had slipped and hit my head on the fireplace brick while trying to reach the living room light causing me to be knocked unconscious and stop breathing altogether. By the time the medics arrived I had gone into cardiac arrest.

Thank you to everyone at Providence emergency room for keeping me alive and stable until my surgeries to repair multiple internal injuries and failing organs.


I then would like to thank Northwest Hospital for taking me in and completing the final surgeries, mental health studies and neurological tests to get me over the hump and on the right track for being moved to recovery at Kindred.


Thank you to Kindred Hospital for all of the hard work and motivation to get me moving my body again as well as learning to walk and talk.


A special thank you to Marynell, the Activities Director, for creating a Haunted room for me for Halloween.


I also want to thank Ed, my PT instructor, for kicking my butt all day long and keeping me motivated.


Also a huge thank you to my best friend at Kindred, Heather. Without her I never would have learned how to yell again, as my first words were yelling her name down the hallway.


I want to thank Robin, who as it would turn out, has been a long term family friend and became much of my emotional support in my final months at that recovery hospital.


A final shout out to Gene at Kindred for pushing me as hard as I could go in my PT training.


I would like to thank all the wonderful people at Providence Rehab for helping finalize my PT before helping me enter back into life at home with assistance.


I would also like to thank my personal trainer, Ken for being so understanding when I seriously couldn’t stop drooling. I will never forget being wheeled in to your room and seeing you in the yellow water proof scrubs. Rest assured, I have stopped drooling.

I would also like to thank Bob for being firm with my mother-in-law who flew all of the way in from Arizona to mouth her opinions and trying to assure her that I was ready to come home and it wasn’t a plot from my mother and myself to allow me to go home before she felt I was ready.

And, lastly, I would like to thank Nurse Wendy for holding me and hugging me hours after that family meeting which left me in tears all night.

It has been one hell of a year and I can’t thank all of you enough for not just treating me like any other patient. I don’t want to think about what could have happened without all of your help. I owe my life to you.

Thank you all for giving me a second chance at life in which I am living it up to the fullest every day!

With the greatest respect,

Jacee Caldwell

Someday

I've mentioned it before, but for the sake of this post, I'll say it again.

My doctor advised against giving Son biological siblings because they would likely have the same chromosomal defect as him.

It has always been a clear fact and truth that someday Dan and I will have foster kids. Now it's such an odd feeling that it's the only way to fill our house with more children.

Doctors have said that Son will have his trach tube until he's about 2-3 years old. He'll be big and strong enough by then to undergo surgery to widen his throat. Dan and I decided to start fostering once the trach is out.

A few people have joked with me about when I plan on getting my nursing degree because of how much we've had to learn since Son's birth.

Yesterday, Nurse L told me about a friend that was looking to adopt and described a local, 7-month old baby whose parents lost custodial rights before birth due to extreme drug use. The baby was immediately trached and is still living in the hospital because his case is extremely hard to place. He can literally only be placed with a trained nurse.

I'd never considered this aspect of fostering before.

Maybe someday we can be the ideal parents for a child that nobody else can handle since we've already been through it. Maybe someday we can be the ones that run in when everyone else is running out, and give a hopeless child the hope of a normal life and a place to call "home".

Maybe we will be able to change a few lives in a couple of years :) .

Can't We All Just Get Along?

Weddings always make me tear up. Seeing two people express their pure love for eachother is emotional! We need more love in this world. I stumbled across a wedding show today and fully enjoyed it, teared up, enjoyed the lovely moments, and then realized something.

"Oh, this is a male couple."

It's all love to me, yet I wondered what the rest of the world is thinking... Is this beautiful, tear-jerking couple being judged for publicly sharing their love because we were raised being told that loving someone of the same sex is wrong?

If nobody told me that it wasn't okay to love whomever you wanted to love, I would've never known that it's a cause for hate.

My hope is that someday, everyone who wants to keep lovers of any gender apart will feel as silly as all the people that wanted to keep people of different colors separate.

In a casual conversation with Nurse A, while talking about Son's future, I said it'll be weird for me to accept that he'll grow up, and anticipating the moment when "he brings his first boyfriend or girlfriend home because I've spent his whole life patting his bottom while helping him work his toots out." I froze for a moment while I processed what I'd just said, awaiting Nurse A's reaction.

I apologized if my statement was offensive to her beliefs and said that I had spoken too fast. She laughed, shook her head while smiling and said, "It's all good."

I promise myself that I will always give Son time to form his own opinion. If Son wants to paint his room pink and rock a green mohawk, he will know that it's totally fine with me.

He will continue to get odd stares and whispers around us in public the whole duration of having a trach tube and an NG tube. People stare at Son because they're curious and don't understand because it's something they're not used to seeing, but I won't let it stop us from going in public. He's alive and happy, and I will try to never let the world teach him that two men holding hands is a cause for staring, either.

Same sex couples shouldn't feel like they have to hide out. Let's just celebrate love and being alive!

Brilliant!

Mom knows that I blame Papi for breaking every pen I touch.

Recently, I had to sign something for her. Guess what? Pen ran out of ink. We both kind of smiled and shrugged. She left the room and returned with a pencil. Brilliant!!!!

(I'll be really baffled if Papi figures out how to make a pencil run out of lead).

**Update 6/7: After having 2 pens refusing to provide ink, I grabbed a mechanical pencil. The lead snapped off 3 flippin' times before I decided to give up on my task. **Sigh.**

The Youngest Learns To Be The Loudest.

In the household I grew up in, I was the youngest of 4 (and sometimes all the way up to youngest of 6-7, depending on who was staying with us).

Every Sunday, we would line up by the hallway bathroom to shower before church, and since we were lined up by age, I was always last. No hot water for me!

Did I ever get the remote? No.
Did I tend to get smashed between couch cushions and be made into a "Jacee Sandwich" while my brothers sat on top? Yes.
Did I get sent to bed early with my sister, only to sneak out a little bit later to discover all the older people were eating ice cream? Yes.

I think it's inevitable that the youngest learns to be the loudest. And by "loudest", I don't necessarily mean by volume, but you WILL find a way to get your point across and make sure you're being heard.

I told you that in order to preface this next part.

It was a weekend long event when Papi went back to sea since that's how long I told the out-of-town visitor (let's call him "T") delivering Papi's remains was allowed to stay.

Night #1: It's a HUGE rule of mine to never speak ill of the dead, and on this night, T alleged the worst circumstance and I couldn't believe my ears. I shook it off, smiled, said that I was "Full of questions, but at least for tonight, let's have a nice, family dinner and we'll talk about it tomorrow".

Background Info: My friend "L" was living with Papi and died 2 days after him. She was dying of blood poisoning on the couch while T busied himself ransacking the trailer after learning of Papi's death. T found the cash box, the wallet, dug through everything, took the car, and left L to die, claiming he thought she was just drunk.

Day #2: (Before sending Papi to sea), I was bursting at the seams with anger and questions for T and was doing so well at keeping my mouth shut, but as I sat at a table with my mom and T, chomping on my lips, the conversation went quiet and my mom looked at me to say, "Jacee is thinking something."

Yup! Flood gates opened up and I lost my mouth filter. It's like when you catch a yellow traffic light; you either run with it, or stop. I always run with it.

It is a widely known fact that when I KNOW I'm right, you will quickly hear that you're wrong. I am very blunt and if there's ever a bush to beat around, I stomp through it. Although I've learned to be ladylike and polite when necessary, this Jackass didn't deserve one ounce of politeness.

I literally interrogated T, starting with asking about if he actually knew the medical cause of L's death, and that she had died of blood poisoning from an unattended rash, and if the squatters that quickly showed up at the trailer had enough sense to call an ambulance for her, than why didn't he? Why was he so busy raiding the trailer to notice her on the couch? Would she still be alive if he hadn't been so preoccupied with stealing things? And HOW DARE HE TELL ME on Night #1 that L killed Papi because she knew she was in the will, and then killed herself because she couldn't deal with the guilt?! T's the one that left her there to die while he ran off with cash and Papi's car.

It felt like I could hear jaws dropping all through the house. A few had the same questions, but I knew nobody was going to ask.

I still didn't get any answers to my questions, but I received a lot of dumb shrugs and sighs from a very dumb person. I found peace in being able to call him out on his crap, and now I will live a happier life knowing I never have to see or talk to him again.

Mom visited on Monday and said she was proud of me for calling T out. She even said T told her on Night #1 (regarding me gently saying "We'll talk about this tomorrow") that he wouldn't be attending the memorial the next day because he didn't want me to confront him.

I am proud for standing up for our two passed loved ones, and happy that my mom acknowledged it :). My head is held higher today.

Maybe being the youngest helped me become a more assertive adult, and if that's sometimes considered offensive, than maybe you just can't handle the truth.

Papi Went Back To Sea Yesterday.

*(Before you sound the alarm, rest assured that we followed all state laws about sending human remains out).*

His wish was fulfilled, and surprisingly, I didn't cry nearly as much as I thought I would.

 

It was still very emotional for me, even though I heard a few family members say things along the lines of, "He said goodbye to me a long time ago," and, "I don't have anything to say to him," and, "Oh I guess he was really selective about which grandchildren he liked." (Then how about you don't attend?!)

 

Yet with most of my family together, as I held my 5-month old son tight (looking stunning in his tuxedo, if I do say so myself!) we watched as Papi's ashes swirled around in the water until they dissipated. Mom tossed a personal letter off into the water to be sent out with him. Even though I'd prepared a mini speech, I just couldn't do it with so many negative vibes around us. Nobody else had any words to say, and at least two made it clear that they thought this memorial was a waste of time.

 

I tried to keep myself together but the only thing I could think of to say aloud through my sobbing was, "Papi, I hope you are still a sarcastic butthead in Heaven." (I wanted to say "jackass" ((as I lovingly called him to his face in life)) but there were children around).

 

Now, after I've had time to process everything, I feel extremely honored. Maybe he was selective about which family members to show love to, and he chose me.

 

And now my son has one more angel to smile at.

 

R.I.P. Papi

Holes In The Floor of Heaven.

Today I woke up, got out of bed to maintain my typical morning ritual of fetching a glass of ice water, then headed back to bed with plans of laying there and watching the news until my cup was empty.

By chance, I actually looked at the bed before climbing back in. There was a penny on my pillow. If you know me, you know I see meaning in this. Someone is thinking of us today :).

It Happened Again

My husband and I have had an odd tradition ever since we started dating. When we wake up, our pillow talk consists of me telling him what went through my head while I was off in Dream Land. My dreams have always been so vivid and loud that I remember everything down to the smallest details, and my unconscious brain comes up with some pretty good stuff! He is always amazed and enjoys the daily story telling.

Two days ago, when he asked about what has essentially become his early morning entertainment. I was still thinking over the details and said, "I'm not sure... but I just really feel like I have to ask Nurse L if she wears leggings. Is that weird?"

(In the dream, I was simply watching TV with Nurse L when a news story came up about someone that died. I realized it was someone I'd gone to elementary school with and the news channel played a quick slideshow of photos. It quickly flashed a 5th grade picture of me and I said, "L! L! Look it's me!! I'm on the news! Look at my awesome leggings!!" She slapped her hands on her knees and said, "I LOVE leggings!").

I wasn't planning on asking her because it was just such a silly and pointless question. She only wears scrubs to work and it wasn't going to make my life any different to know what she wears on her own time. But then she showed up for her shift and I couldn't help myself.

Me: "L... I have an odd question for you."
L: "Oh, let me sit down. Is this gonna be another good one?"
Me: "Eh, not really. I was just wondering if you wear leggings?"
L: "Leggings... like spanx?"
Me: "No, leggings like what people wear with a dress."
L: "Yea, I wore leggings and a dress yesterday."

Dan was in the room and snapped his neck towards me so quickly with a "WHOA" expression.

Sure. It's nothing significant, but I am starting to intrigue myself.

Then she said, "Oh, and..."

I cut her off at that and said, "Yea, we've also noticed that [insert name of a specific medicine for Son that is only given on as 'as needed' basis] does seem to make a difference, too. Feel free to use your discretion about using it."

She paused for what seemed like an extremely awkward amount of time, tilted her head, and said, "How did you know that's exactly what I was going to ask you?" Her and Dan were both staring at me at that point, but Nurse L had her eyebrows furled up in a questionable manner as if she's wondering about what exactly just happened.

As Dan was staring at me, still looking mystified, I asked him, "Do I have to add you to the list of people that think I'm crazy?"

And he replied, "I wouldn't have married you if I thought you were normal."

I love that man :) .

Dear Son,

I didn't get to see you when you were born and it was weeks before I could hold you. I didn't feel like a mom. One moment, I had your lovely, little body inside me, then, by the swift hand of a surgeon, my body was empty.

You were gone. My phone didn't have reception, nor is it one of those nifty phones that have internet. And why can't anyone update me about my baby? I was sedated for three days during recovery, and all I knew was that I was empty. It was such a daze that even the statement that I'd just had a baby didn't even feel correct. When you have a baby, shouldn't you literally be in possession of said baby?!?!

I spent three days essentially alone in my hospital while your daddy spent his days with you at your hospital. I can't say it enough; I didn't feel like a mom. It just felt like a magic trick.... *Now you're pregnant and NOW YOU'RE NOT!" And now let's all make the baby disappear!! * Strangest feeling ever, and I'm surprised I could even find words to remotely describe it.

It took awhile for motherhood mode to kick in, I admit that, but ever since you finally became mine, I don't ever want to let you go.

Son, you are my best friend. I love you more than bears love honey (and we all know that's an awful lot). I love that you've picked a favorite blankey and a favorite toy, and that even though you can't make a sound, I hear what you're saying. I know when you're cooing at the ladies or laughing at the silly faces of bearded men (because you're really just not used to seeing men besides Daddy.) I love how we fall asleep together and you'll occasionally lift your head out of the blanket you're suckling to look at me, almost as if you need to reassure yourself about who's cuddling you. I love saying, "Yes baby, it's still Momma", then you'll give a bashful smile and bury yourself back to your blankey and into slumber. I love it when the nurses consult me about how to handle a specific situation, and I can confidently tell them that you have 3-5 meltdowns per day, and when you start having your dramatic fits of wheezing, they should expect about 5-8 coughs. I know you. And you came from me. And that is just miraculous. You are truly the love of my life.

And now tomorrow I have to face a mother's worst fear. You are having a procedure done that requires you to go under anesthesia. I know you will survive, life will go on, and I trust your doctors. But I can't imagine how I'm going to hold back from crying my eyes out so I can keep it together long enough to get through the formalities of paperwork. It used to be so much easier because I didn't know you. You were just a baby that someone said had been cut out of my tummy, and then drugged me for days. Now I'm amazed (and mildly embarassed) about how easy it used to be to just walk away when you had a procedure. This time, I've asked every hospital friend I have about who can meet me where and when because I need a distraction. Can someone just sedate me too?!

Now I have to kiss you goodbye and tell you that I love you without crying. Tomorrow will be very hard, but this procedure has to be done. You are much stronger than me, Kiddo, and we are both very lucky to have your daddy be strong enough for all of us.

I love you Son.

My Mom Said Son Is Smiling At Angels

My blog is named "Becoming Jacee" because even though I've been writing since 2007, I am still only 24-years old, and I still discover new things about myself daily.

You can call me odd, but then it's also your choice to stop reading my blog.

My Grandpa (my "Papi") died just days before Son was born. We are so close and I would easily refer to him as one of my best friends (did you notice I don't refer to him in the past tense?). I found out about his passing through a very rude voicemail and then sobbed so hard it felt like my eyes would bleed.

My cell phone became evil that day. It just kept ringing and ringing and ringing from unknown numbers and everybody wanted something from me. The attorney wanted to know who is paying Papi's unpaid balance. The squatter's that have already taken over the trailer wanted to know if they can have the trailer. The landlord of the trailer park wanted to know who is responsible for paying the monthly space rent (Fuck the trailer, I'm broke, go ask the squatters!). The person in possession of his dog that was left to me wants to know when I can plan on driving to Oregon and get her. Two people called wanting to know what was left to them in the will.

How can you focus on what's in it for you to gain when we've just had a loss? I explained to everyone that I am days away from birthing a baby that we know will be disabled, and everyone just needs to chill out when I can focus on this in about a week.

Finally, FINALLY, the phone shut up, and I was MAD at everyone who called and MAD at Papi. I was 9 months pregnant and this had just drained every resource my body had left, so I screamed AT HIM. I loudly screamed at him as if he was in the same room for 20 minutes. (HOW COULD YOU DO THIS TO ME! YOU MADE ME IN CHARGE OF EVERYTHING AND I'M OVER 300 MILES AWAY, ABOUT TO HAVE A BABY, AND I CAN'T HANDLE THIS!!!! HOW DARE YOU DIE NOW!!!). In an emotionally charged fit of rage and despair of loss, I screamed at him so loud that I'm mildly surprised the neighbors didn't come busting through the door.

Something in me changed that day. Before you read further, feel assured that I am not crazy or hearing voices and seeing apparitions around my house. Now I "joke" that Papi lives at my house. Every time I mention it to someone new, it's like dipping your toe in the pool water, just to test how crazy they think I am. But in all seriousness, he won't leave us alone! Something about him passing over has heightened my senses with my desire to still be with him.

A few days ago, a nurse arrived for her night shift. She was physically alone, but as I glanced at her walking through the door, I just felt a man was with her. It's like that feeling when you wake up because you just sense that someone is staring at you. It was patriarchal and a friendly feeling, and as if I'd almost received the warm greeting of, "Hey, Jacee."

I stayed on the couch and before she'd even kicked her shoes off, I asked her if the name "William", or maybe more commonly referred to as "Billy" meant anything to her. (I'm grateful she didn't look at me like I'm crazy). She sat down on the chair close to me and said her grandpa "Billy" had just died, and that was her reasoning for being just a bit late. She cried when I said he's definitely still with her. (The nurses and I are not allowed to share phone numbers, be facebook friends, exchange email addresses, I don't even know her last name).

I sent her off to Son's room and that was that.

Just by looking at her, it's like I magically absorbed a wealth of knowledge about her.

On a different note, Son is usually hooked up to what's called an "oximeter". It monitors his pulse and amount of oxygen he's receiving. It alarms every time his stats drop below a certain level. The probe is attached to his foot, but any time he sweats or jiggles his little feet around, the sensor gets moved and sounds the alarm. Yesterday, he was sleeping in his room but kept wiggling and the loud alarm kept chiming. In a fit of frustration that this was going to eventually wake my sleeping baby, I turned off the machine, removed the probe from his foot, and headed back to the other side of the house with baby monitor in hand. Not too long later, (I should have been paying closer attention to the monitor),  I distinctly heard the alarm screaming again. I ran across the house into Son's room and he was clearly in distress, needing assistance. The machine was still off and not attached to him, but I know I heard it... Someone is helping me, but also enjoys pulling pranks on me. The light bulbs keep going out. Every straw I grab breaks. Most pens runs out of ink. (I usually grab 4-6 of each before settling back on the couch).

I used to call it just being intuitive, but I've changed a lot ever since Papi left his body. Now there are at least three extra people lingering around my house. When I gently ask the the spirits to leave my room before an intimate moment, whichever of our cats/dog are in the room seem to almost chase/follow them out. Maybe I do seek to find meaning in everything, or maybe there really is more than meets the eye.

(I wish I could charge them rent).

Love

This is such a beautiful life.

There is no greater feeling in the world than seeing my two guys smile at me. One chose to fall in love with me, and the other is a product of that love.

Happy Mother's Day!

I Doubt Myself A Lot.

On the first day of 6th grade at Eisenhower Middle School, (first day ever that I had to travel around a school campus to find different classrooms), the teacher of my computer class introduced himself, and then scribbled out on the white board the word "a lot". This is two words, and I didn't previously know this. (Any assignment turned in with this specific, monumental, glorious word misspelled will be handed back with an "F", and the already nervous, 11-year old, little Jacee will remember to never misspell this word again). Gone are the days of spelling "alot", and by the way, Welcome to Middle School!

There are a lot of other things I still know that I don't know. I'm hoping someday, someone comes into my life with a guide book or road map of where I started and where I'm supposed to end up. (Are "guide book" and "road map" supposed to be one word or two?. Who knows. Whatever).

Anyways, during our stay at the hospital, I had essentially rehearsed answers to questions regarding Son and how I'm doing postpartum because I didn't want anyone to question our ability to get discharged from the hospital and go home as a family. Whatever I was dealing with, that was my issue, not his, and every baby is happier at home. A smile makes every answer better.

Now I'm dumbfounded when people tell me things along the lines of, "You're such an inspiration!," and "You're so strong!". Um, no. I'm not... not at all, actually. I am just one person making from one day to the next, making it as best as I can; just like you. Didn't we do what any parents would have done? We were met with an insanely hard circumstance and both smiled through it while living in the hospital and attending classes to teach us how to care for our disabled baby. It felt as though we had to act a specific way through showing people in charge of discharging us that, yes, we are able to survive at home.

We are home now and even though it's still a struggle every day, it's worth it. I am so in love with my son and more in love than ever with my husband. But my question is this: does basically just surviving through misfortune install a sense of admiration in others? Because I still feel like all I did was exist while all the other details happened around me. And I feel I could have done a lot better, and that is where I doubt myself.

A nurse asked me, "Do you feel guilty?". Of course I feel guilty. I think any mother, anywhere, ever, in the entire universe would feel guilty their whole life if their baby was born with complications. (Of course the analytical part of me instantly disects the question 6 different ways. Does she think I caused this? Does she know it's a chromosomal defect? Does she think I drank cocktails while letting Mixed Martial Artists freely punch me in the stomach while pregnant?) Maybe she was questioning me, maybe she wasn't, but as I analyze it further, I remind myself that the fact that I immediately felt defensive is reassuring that I am a good mom. I am ready to cage fight Mike Tyson, run through a burning building, or punch a tiger in the face if it meant defending my little guy. Maybe defending him means I also have to get better at defending myself. I will always feel like there are whispers around us, asking, "What DID SHE do wrong?".

But in a different context, I still look at Dan almost daily and positively say, "We did it, Babe," because I want him to be assured that he's doing a good job. But... if we're both doing/did the same thing... maybe I'm doing a good job, too? Maybe I just need to reevaluate how I view myself.

My Son Sucks.

Yup, that's right Kiddo. This is the probably the only situation I can imagine that phrase being used in a positive light. You suck! In fact, you're really good at sucking!

This means that maybe sometime in the not too distant future, we'll be able to get that NG feed tube out of your nose because you're progressing really well on eating orally. Keep sucking :)

I See Meaning In Everything.

Dan used the hall bathroom last night while we were hanging out in the living room. He left the door open since we were home alone (with the baby) and I heard him say, "Well that was weird."

Upon coming out, I asked him what was up. Still standing in the hallway, he said he'd been looking in the mirror while using the toilet (also weird...) and saw a closed bedroom door across the hall open on it's own. I stayed on the couch while we're having this short exchange. As I'm looking at him, the hallway light burnt out. He flicked back on the bathroom light, then that light burnt out as well.

Standing in darkness, he says, "Dangit!!" and flips on the dining room light so he can find his way to new lightbulbs. The light flicked on... but only for a brief moment because then it went out as well.

I think our visitor is back and I need to go stock up on lightbulbs.