The Week After

We stewed on the information and diagnosis (if you could even call it that) the doctor gave us, for a few days. I knew that what he had said wasn't right. I didn't walk out of that office with an overwhelming feeling of relief and I just knew that meant it wasn't right. I didn't know what was going on with my little boy, but I knew I couldn't accept what we were told.

I didn't go to a different doctor right away. The doctor we saw had been his pediatrician since Foster was born. We liked him. He was a good doctor. He was efficient (in and out in 30 minutes at the most) and was warm and friendly. He always made jokes with Archer and it felt like we were going behind his back to talk to someone else. The other part of that was that I knew that all the doctors in the area knew each other, I wasn't sure what to do next or how to approach it.

We finally settled on seeing the doctor in our town, the family doctor I have gone to all of my life. The appointment was made for January 29th.

And while I hate to leave you here, I'm trying to stick to the dates things happened, both to keep the memories from crossing each other, but also having a specific place that the dates are recorded as well.

Other memorable dates from Archer's Journey include:
January 22nd
January 6th

January 22, 2013

It's been one year today since we saw the first doctor, concerned about Archer's list of symptoms that continued to grow. It was easy to think a few things were unrelated but as they all started to come together, there was no avoiding the inevitable.


We were thinking all kinds of things including Bell's Palsy (which fit more than one symptom). What we were told by the doctor was not expected. The doctor was very brief, came in, looked him over and concludes it was a form of Cerebral Palsy, not something we should be too concerned about and he'll grow out of it. I'm not an expert on CP, but I was pretty sure it wasn't something someone grew out of, and he was too old to be newly diagnosed with this disorder, especially since he had been typically developing until very recently. We walked out of that doctors office with more questions than answered, completely unsatisfied with what we had been told, but still unsure about what to do next.

Part one of the Archer's Journey series can be found here.

January 6th, 2013

You might wonder what's important about that date. It was just a regular Sunday in January. There was snow on the ground, but it wasn't bitterly cold.

We slept late that day, Archer had been up several times that night and I was worn out. He came into our room around 11 and laid down for a little bit, then he said he was going back to his room because he didn't feel good. He vomited twice on his way. He said he had a headache, but I was chalking it up to not rnough sleep and maybe a little bug. 

At that time, the only other symptom was his hand. He had this weird little way of holding his hand, not using it, and almost dragging it along behind him. It wasn't that bad, just yet, but something was different. It wasn't enough of anything to really be alarmed, but we were becoming more aware of everything that was slowly unfolding. 

We definitely weren't ready for what was to come.

January 6th, 2013

The Lady in the Waiting Room

Yesterday Archer had a follow up MRI, his fourth in a year. The whole process has become pretty routine to me. The first time was a little scary and frustrating and unknown. Now I make sure my phone and iPad are charged up and I consider it a little down time. They typically schedule his in the morning since he can't eat or drink after midnight. We get there, wait our turn and then once he goes back and is sedated I'll grab some breakfast and sit in the waiting room with a book on my iPad.

Yesterday as I was getting ready for them to call me to see him afterwards, I noticed a woman who came in the radiology waiting room with tears rolling down her face. I can still remember that first MRI. I can still remember the whirl wind of everything that was happening, everything I was feeling. It was so overwhelming. I grabbed Foster and we went to Archer's room for some quiet time while everyone waited in the waiting room to hear news.

I was torn, yesterday, between reaching out to this woman and giving her space. I ended up just letting her be. She was busy texting person after person on her phone, and I know what it's like to have to get information out to concerned friends and family. I still wonder though, if maybe I should have gone to sit with her or offered to pray with her. Just let her know that she wasn't alone. I'll definitely say a prayer for her tonight, and hope that she and her family are at peace with whatever is happening in their lives. And since that's all I can offer, I pray it's enough.

Archer's Journey, One Year Later

It's been one year since we started putting pieces together and realizing that something just wasn't right. I'm going to be posting about milestone dates and just reliving some of the days and moments we went through as a family and the things my brave little boy went through. I want to remember these things but I also want to be able to tell him his story as well. He remembers somethings, and he has a little bit of insight, but he doesn't remember everything and I know his memories will fade as he gets older.

Posts about Archer's Journey:
Vision Changes
January 29th
The Week After
January 22nd
January 6th

Author's Note: The earlier posts will be short so that I'm not adding information that we didn't have at that time. I wish I had been writing this down as it happened.

Lone Survivor: Movie Review

Last night for our date night, we went to see Lone Survivor. I saw a preview for it a few weeks ago and we saw one together this week. Chance immediately said he wanted to see it and I agreed, much to his complete shock. He then admitted to having a man crush on Mark Walhberg. Well, maybe he didn't say it that way, but it was inferred. Anyway. We both agreed on a movie, which doesn't happen often that we both genuinely want to watch the same thing.

I had no idea what it was really about, but it looked pretty good from the previews. Once I really knew what it was about, I was a bit worried that it was going to be more than I could handle. Movies that involve beatings and brutality are something I can't really handle watching, but I decided that if it ended up that way, I would suck it up and watch it.

The movie started and built up the relationship of the characters. Not too in depth, but enough for a man watching the show to get, which I figured was the target audience. The plot built really fast and the thing that had to happen to get the story moving happened fairly early (at least to me, though the movie is on the shorter end of average) which worried me even more. That's when the action started. And let me tell you, I sat cringing, covering my eyes, and eventually had to get up and go to the bathroom to take a break because it was so intense. Remember, I'm a baby with this stuff.

I was impressed with the story and the actors. Saddened that it all really happened, pretty accurate portrayal. There was a wonderful tribute that made me cry and made Chance almost cry. We talked about it all the way home and even after we got home and went to bed. It was a very interesting story and made me want to know more.

I definitely recommend it, with the disclaimer that if you're like me, it's tough to watch in parts. I wouldn't let that keep me from watching, it's worth it.

52 Weeks of Me

Selfie was included in the dictionary this year. That is not a word I would ever say out loud, but in text it's not nearly as annoying.

Last week I decided to do 52 weeks of photos of my kids. After talking to a friend the other day, I realized that I didn't have very many photos of myself. So now I'm challenging myself to do a photo of myself each week in addition to the photos of the boys. The ones of me will most often just be cell phone photos, I can't get myself in my big camera without help and five year olds aren't the best with a camera.

Make up!

I recently joined a co-op, thinking I would buy lots of kids stuff, and found a really great deal on an Urban Decay Naked palette and some makeup brushes.

I spent some time playing today. Quite a lot of time actually, but next time it will take less to figure out what goes where and what colors to shade with, etc. I would not wear this much makeup on a daily basis, but for nights out, it might be fun.

After I took this, I realized this was uneven so I fixed it, but didn't get a better pic.

Something's Gotta Give

Over extended. The perfect title for my life right now. I need to learn to better manage everything. I leave my house at 6:30 every weekday, arrive home around 5 depending on how early I leave work and how heavy traffic is. (Traffic usually equals ridiculously slow drivers who enfuriate me. We're not talking gridlock here.)

I get home and think, "Dinner? Hmm, I'm supposed to feed these people?" And then it's either fast food or something thrown together like spaghetti and broccoli and cheese. I sometimes feel like I'm on chopped. I open my cabinets and just wonder what I can make in 30 minutes with the random assortment available. 

Baths? Sometimes. I try to sneak in a shower after the heathens go to sleep, but sometimes that's after me. I pile us all in my bed, we (sometimes, not often enough) read a story and then I crash. 

Sometimes I try to tidy my ridiculously messy house, but not daily. I don't have the motivation or stamina. It's exhausting just thinking about it. There is clothes vomit in every corner of my house. I just keep buying laundry baskets to hold everything. I feel like the house is closing in around me at times. 

I know I should do better, but I just can't motivate myself. I'm not disciplined enough. That's not a cop-out, just stating facts. 

I wish I could work 3 or 4 days a week, and still send Baby to daycare every day so that I would have time to really get caught up. Though, it's not like it matters, I've organized the toy bins every other day since break and he just keeps dumping them. 

So there. My house and parenting skills are a mess and seriously lacking. Being out of my house 10.5 hours a day, then coming home to parent them alone half the time is kicking my butt. I'm not feeling sorry for myself, this is our life. But something's gotta give. 

And I need to do better. 

Week One

While perusing the internet today, mostly by chance actually, I found a blog that was doing a 52 week challenge. In an effort to both post on a regular basis and take more photos of my kids, I'm going to post photos of them weekly. Some weeks it will be more posed shots, some weeks just fun stuff. Today it's just them being silly boys in mommy's bed.

Resolutions

I rarely make or keep resolutions, but since it's New Year's Day, I'll write about some broad goals I would like to accomplish. 

I want to read more. I've updated my Reading Challenge page up top, you can see the books I read last year and the books I'm reading this year. They're linked to Goodreads, which I highly recommend if you're not a user. 

I've always been a reader, but I've never had the patience for "greats" or "classics." I'm starting the year with The Hobbit and plan to read the rest of The Lord of the Rings books as well. Hopefully I can make it through. 

I want to blog more. I think we can all agree that I failed epically at blogging last year. I had too much going on and my brain was too foggy to form coherent thoughts that anyone would care to read. I promise to try and be entertaining, buy mostly I like having an outlet for my ideas. I would write them on a notebook, but it would end up lost, broken, spilled on or possibly even eaten. These are just the consequences of raising small children. 

I want to be a better photographer. Not a professional photographer, I just want to learn more and be better. I want a nicer camera and I want to learn it inside and out. Then maybe someday I'll be able to pursue a real photography business. 

I want to be more honest. Having a blog can sometimes be a tough balance. There are days I want to rant about people that make me angry or get on my nerves, but that's not my intention with this blog. There are days I want to rant about my husband, but I know I shouldn't expose all parts of my life on a public blog, so I won't. But I do want to be more transparent about my life. I don't want it to be a place to talk about how perfect we are, I want it to be real. I also want to be more real in real life. I'm a sugar coater, and I need to man up a little. 

I want to have more patience. Ask my children about this. I get so worn out from being the only parent a week at a time, and I take those frustrations out on them. This one is less broad, on purpose. I want to be more understanding and less quick to blow my lid when they make mistakes. Or even when it's on purpose. 

Hello 2014!

It's a NEW year! Wow, 2013 went by fast.

Quick wrap up?

We started 2013 with a bang. Tumor, surgery, Chance got a job, my dad had a heart attack, summer, I got a job and bought a car, Chance and I went away for a weekend alone, kindergarten, then back to pre-k, birthday party, Chance's birthday, my birthday, holidays.

If you're observant, you'll notice that the blog has changed names. My previous domain lapsed last year and someone else bought it, so I've changed the name. :)

Anyway, Happy New Year! You'll be seeing more of me this year.

Emotions

Everyone has been telling us how strong we've been.

I guess I'm unsure how we were supposed to be. Who has time to cry? I let myself shed a few tears alone in the parking garage, but I had to get it together and go feed my baby.

I didn't fall apart because I didn't have that luxury. I didn't break down and cry because it wouldn't have done me or him any good. I needed his environment to be calm and secure more than I needed to indulge in my deep fears. All I cared about was being positive and calm, that's what my precious fearful boy needed.

I have been religious my entire life, I grew up in a small church and those values have steered me every step of the way. That faith allowed me to believe that everything would be ok. I prayed constantly for peace, acceptance of God's will and calm. It's very hard not to ask for what you want, but it was more important to me to feel calm and prepared than to ask for healing that might not have been a part of God's plan. I feel like we were truly walking by faith. We had no control, so we prayed.

If you've ever used the phrase "emotional roller coaster," let me tell you, I've been on one. We went from, "large mass" to "brain surgery" to "all clear" (with lots of waiting in between) in less than a week, there really aren't much higher highs or lower lows.

I still sit and wonder if it all really happened. Did we really go through all of that? The shock is overwhelming. I can tell you a list of emotions I've felt, but numb might be the top one. Calm. Determined. Shocked. Scared. Sad. Elated. Probably the entire spectrum.

Hospital Timeline

We were admitted Monday night, unsure of our future but certain that Archer would have an MRI Tuesday morning. It was a restless night for all of us, but especially him.

Tuesday morning came early, 4:30 for Archer and I and brought a neuro surgery team. There were 4 or 5 of them. They addressed Chance and I, didn't introduce themselves to Archer, and told us surgery would be at 9 the next morning. He went down for his MRI soon after, and we waited for results all day. We didn't hear anything.

Tuesday night was sleepless for me, wondering and worrying. The MRI would determine if the spinal column was clear and it was frustrating to know that someone had the answer to that question and they weren't telling us.

Wednesday morning came early again, the 4 am vitals check woke him for the second day in a row. Around 8 the neuro team came in again, after my family arrived and showed us an MRI of a very large tumor above the left ear, spinal column was clear. My first little breath.

They took us back to holding before surgery soon and our little guy was too quickly being pried off of me and taken into surgery. The wait began. It was estimated at 6 hours.

We sat in the waiting room surrounded by family and close friends. It was an amazing feeling, knowing that so many people cared so much for us to sit vigil while we waited for news.

Less than 4 hours later the nurse called. Her voice was neutral when she said, "They're closing up, if you want to go to the third floor Dr Gross will be in to talk to you." My stomach dropped. It was too soon. She didn't say anything positive. She didn't say he was stable, she didn't say it went well.

Chance and I went down stairs to wait. It was the longest 30 minutes of my life. Then the doctor walks in with a smile and I breathed in for the first time in hours. The tumor was out, my baby was fine, she believes it's benign. Relief flooded through me and Chance says I exploded verbally. I felt it happening, but I couldn't stop. I didn't know what to ask, but I wanted to make sure she wasn't going to change her mind.

We were allowed to go into recovery one at a time. He was crying when I got in there, and that was a helpless feeling. He was so afraid and I just wanted to get in bed with him and hold him. I was scared too. He looked different and had this scary incision mark and I couldn't help.

I followed him up to the PICU and then we waited again. Waited for him to wake up and be well enough to move to a regular room.

He didn't really wake until late that night. He was in pain and he was upset. He was scared of the nurses and doctors. He flinched when they came in. We got no rest.

Thursday brought another MRI and a move back to a regular room. The second MRI was clear, the doctor had gotten the entire tumor out. I breathed again.

We had more visitors that night, and he seemed to be doing ok. Then Chance decided he was running a fever and he had to go home. Archer slept very little and jumped like he was falling every time he went to sleep. I slept at the foot of his bed because he needed me close and I was afraid of hurting him.

On Friday the swelling became worse. He withdrew, his speech was affected and he was scared to pee. His pain seemed low, and he was only taking Tylenol. He had lots of visitors, but he wasn't interactive. The physical therapist came and brought a wheel chair for him to tour around in She made him walk from his chair to me and sit in my lap out of bed. He still hadn't eaten and they wanted him to eat something. He decided he would rather climb out of the chair with me than eat. It made me giggle because he said "Go away." to his tray and pushed it. Then he started sliding out of my lap in an effort to get in bed. Then he told me to go away because he didn't want me telling him to eat. The speech path came by and checked his swallow, which seemed normal. He just needed to eat. Later that day he said he was hungry, he just couldn't find the words to tell me what he wanted. I made a picture album on his iPad so he could point to some food items, still nothing. Chance's cousin came by that night with his favorite kind of apple sauce. I had tried a similar one early in the day, but it wasn't our normal brand.

Saturday Chance came back, bringing more applesauce. We had tons of visitors bring every food imaginable, but all he wanted was the GoGo Squeeze applesauce. By 6pm he had eaten a small box of them and tried a few other things. My cousin went for more. That night he was still having a hard time expressing his needs and he was still in constant fear of moving his IV arm and the nurses.

Sunday morning was the best. He ate his breakfast, drank some milk, had a few bites of eggs and biscuit. And more applesauce. When the doctors came by they said they saw no reason why he couldn't go home. We were ecstatic. We got some lunch and waited for my family to bring Foster and help us load everything we had accumulated. His speech was slowly improving and he was getting up more.

It was the end of one journey and the beginning of another.

Stay tuned tomorrow for the emotional side of this timeline.

February 4th 2013, Part One

Today the bottom of my world fell out from underneath my feet.

After weeks of him just not quite being himself, we took our oldest son to the emergency room at Children's hospital for some tests. We were triaged in quickly and within two hours had a ct scan and terrible news.

He has a large mass on the left side of his brain. We don't know anything else at this point.

I feel as though someone punched me in the stomach. Hard. I don't want this for my little guy. I want him to grow to be big and strong and not have to deal with this pain and fear. I want him to be happy and healthy.

I am so scared. How do you tell other people that your baby has something like this happening? How do you recover? I'm so heartbroken and sad, but I know more than anything he needs a strong happy momma. So that's what I'll be for him.

(Write's note: I wrote this Monday night at the hospital, I just wanted to make sure everyone knew before I shared it.)