New Normal… Again

me dad

It’s been over 2 months since I’ve written anything.  It’s beyond hard because I just don’t know what to say anymore.

My dad passed away October 9, 2014 after a short but hard fought battle with small cell lung cancer.  I didn’t write here about his diagnosis other than mentioning it once simply because he read my blog and I didn’t want him to come here and read about how depressed I was knowing I was losing him.  So I just quit writing altogether to avoid that.  He was diagnosed in May and passed away in October- it’s unbelievable and I feel like my heart has been stomped… again.  Since 2012 I have lost so many people I loved- 6 to be exact- and it feels like it’s never going to end.  I begged God to take my Daddy and end his suffering because sometimes you truly do have to love someone enough to let them go.  Knowing that I will see him again one day is the only thing that keeps me going at this point- that and my children.  They are heartbroken as well.  Pop was their world.

me dad
Photo by Kayla Cobb at KC Photography

Brynlee underwent cleft palate repair surgery October 14, 2014.  Yes, it was a crazy few weeks.  She is so strong and did amazingly well.  We spent the night at Children’s of Alabama and she was released the next morning.  Her recovery has been astounding.  She weighs 19lbs 10oz and is almost 30 inches long.  She completely skipped 9 month clothing and went from 6 months to 12 months.  She wears mostly 18 month pants and leggings because she’s so tall and has thunder thighs.  :)  She goes back for her cleft repair follow-up and another modified barium swallow study November 6th.  She just started crawling!  She can also sit up and is still just a delight to be around.

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We started our homeschool year and it was going fantastic, but with Dad’s sickness and Brynlee’s surgery, we have taken October off.  We will begin again in November and probably not take as long as I had planned off in December to make up for lost time.  One of the reasons I wanted to homeschool this year was because I know things were going to be tough on the kids when Dad passed away so I feel like we definitely made the right decision keeping Bryson home.  Bryson is reading, spelling, sounding out words, counting to 100, and doing some basic math.  I’m so proud of him!

fall fair 2014 collage

These pictures are from the fair- 2 weeks to the day before my Daddy died.  He didn’t feel like going, but he had not missed a fair since Bryson was born and he knew it would be his last so he went anyways.  I’m so thankful for those last few memories we made together- picnics at the playground, the fair, playing h-o-r-s-e in the driveway, and simply spending time together.

I don’t want to quit writing so hopefully I can return to my favorite form of therapy now that we are learning to live with our “new normal” again.  What is normal anyway?  For us, normal is ever changing.  One year ago, normal did not include cancer, trachs, feeding tubes, surgeries, pumping, syringes, etc.  We just keep going- that’s all I know.

Brynlee // month eight

pierre robin, pierre robin sequence, trach baby

8 months old, say it ain’t so!

at 8 months, sweet Brynlee, you are taking off!

You weigh over 17lbs now- a far cry from that 10lb 4 month old who was sicker than we knew at the time.  I’ve never been so happy and proud of baby chub!  You wear 6-12 month clothing and 12 month boutique clothing.  You received breastmilk exclusively until you were over 6 months old.  With the stress of every day life and all that we’ve gone through this year, my supply tanked and I went through our freezer stash.  I still pump for you 3-4 times a day.  You receive 12-15 oz of breastmilk per day and then your other feeds are formula.  It was a hard pill to swallow as I wanted only the best for you, but I have accepted it for what it is now and moved on.  I’ll pump for you for as long as possible with a goal of 1 year and then 2 years.

pierre robin, pierre robin sequence, trach baby

July was a BIG month for you.

You began physical and occupational therapy.  After only 3 sessions, you were sitting up unassisted and loving your new freedom.  We love your team of therapists and they love you!  You are working hard and though you sometimes cry, your progress is wonderful.  Now that you can sit up, that’s all you want to do.  You’ll begin speech therapy later this year or early next year.  We are learning ASL and signing with you so we’ll have a way to communicate even if you can’t make sound quite yet.

pierre robin, trach

You were discharged from home health which was bittersweet for all of us.  We are happy that you are healthy enough to be discharged but will miss Jaime.  When you came home from the NICU and we found out there would be a nurse in our house several times each week to check on you, that did not sound like fun!  But then Nurse Jaime walked through our door on that Saturday and she fell in love with you and we fell in love with her.  She became more like family that “just” your home health nurse.  Bella would even sometimes cry when it came time for her to leave.  We know we’ll keep in touch and she’ll probably be back to check on you after your cleft repair surgery this fall.

pierre robin, trach

You continue to sleep through the night and rarely require suctioning overnight.  We usually put you to bed for your 8 o’clock feed and you sleep until 7 or 8 in the morning.  You prefer to sleep in your bed.  You also enjoy sleeping in the car, but you always wake up when we arrive at our destination.  You are not a cuddly napper- you want to be left alone with your pacifier.  There is no rocking you to sleep.  This is a good thing, but I sure would enjoy holding you as you slept sometimes.  You take at least 1 good long nap every day and a few cat naps.  On the days we have a lot to do and aren’t at home, you are fussy without your sleep.  Updating to add that as soon as I wrote this post, you decided you really did want to cuddle and sleep on your mama every once in a while.  I love it!

pierre robin, trach

You “eat” at 8AM, 12PM, 4PM, & 8PM.  Your day feeds are at 5oz and you receive 8oz overnight.  We stopped adding extra calories to your feed and you lost a little bit of weight so we fortify with a 1/2 scoop extra of formula per 4 oz during your feeds.   We were hoping to begin bottle feeds but another swallow study showed that you are not ready for liquids.  You passed your swallow study with super thick pudding-like foods so you do get to enjoy baby food now!  We add rice cereal or oatmeal to baby food until it’s thick enough and then you eat it up.  So far you’ve eaten pears & raspberries, peas, mango, bananas, and sweet potatoes.  You’ve turned nothing down but the sweeter foods like the pear & raspberry mix are definitely your favorites!  You are eating baby food once daily for now.  We have to watch you closely for signs of distress and aspiration (which stresses your mommy out!) and your food goes in your cleft and out your nose which is uncomfortable for you.  I keep the suction machine right beside you so I can suction your nose (you do not like that!) and your trach while you are eating.  Feeding you baby food is a lot of work but it’s so worth it!

pierre robin, sweethoney charlee

You continue to be our most content baby thus far.  And since we are pretty sure you are our last, I guess you get the award for “most content and quiet baby” in this family, haha.  You personality is calm and happy much like your dad.  Your temperament is sweet.  You are rarely mad and are as far from a diva as possible which is great since your sister has that covered.  Over the past week or so, you’ve entered into the separation anxiety phase and you want your mommy by your side or holding you most of the day.  If I can leave the room without catching your eye, you are okay with Dad until you spot me again.

You have two cute, crooked bottom teeth!  Those little teeth are sharp and you love to chew on my finger with them.  It hurts!

pierre robin

Appointments are finally beginning to slow down though therapy sessions have taken their place.  You had another g-tube change and we got the okay to change it at home from now on so you don’t have to go back to Dr. Gilbert for 1 full year!  You see the ENT every 3-4 months and cleft clinic every 3 months.  The quiet won’t last long though as you’ll be having surgery before we know it.  Your reflux is still under control with the new medicine so you only see the GI every 6 months as well.

pierre robin

We are so proud of you!  The other day, I was holding and cuddling you and I said “Everyone needs a baby like you!” then I laughed.  A few months ago, I wouldn’t have wished this on my worst enemy and now I’m saying everyone needs a baby like Brynlee.  God has turned things around for you and it feels so good to just exhale.  You are so healthy and happy, so content.  You very rarely whine about anything and you’ve given everyone who comes into contact with you a new perspective.  We look at you and see how happy you are after all you’ve gone through in your short little life and it humbles us.  How dare I feel sorry myself or you when you do not!?

pierre robin

I love you little girl.  I love you more than you will ever know and I am so glad you are mine.  Your little life hasn’t been easy, but you are such a blessing in my life.  I look at you and I can’t help but smile.  You make my heart beyond happy and bring such joy to everyone around you.

On Depression, Choices, & the Daily Struggle

prom 2005

I wrote this yesterday and shared it on my Facebook page. It’s long (2,000 words) so I did not expect people to actually take the time to read it all. But, they did. They commented and shared. I think we all just want to know that we are not alone. I’m reposting here on my blog so I can easily find this in the future.

I was twelve years old. I was pretty and popular. I was a cheerleader, a basketball player, a world-championship-winning shortstop. I was a straight A student who participated in “gifted” classes. I was surrounded by friends. I had wonderful, loving parents who gave me the world. By all accounts, I had absolutely nothing to be depressed about. I would hear that over and over in the following years “What does she have to be depressed about!?”

I had no idea what depression was at twelve. All I knew is that it was becoming harder and harder to be happy. I still played the sports, went out with friends, and slapped on my happy face but alone in my bedroom, I was sad. I didn’t know why.

It worsened as I turned thirteen and became a teenager.

I don’t know if all the signs were ignored or weren’t caught. It doesn’t matter. I know that I became an expert at putting on that happy face.

Paper was the one place I could not apply that happy face. When I began to write, my hands would take over, my brain happy to let go, to be real with someone, something- even if it was just a sheet of notebook paper.

Paper was eventually how I slipped. On Fridays, we always had some kind of writing assignment in PE. It was an innocent question we were asked to write about- what kind of car did we want to drive when we turned 16? Oh, what a fun question for any girl who couldn’t wait to turn 16 and drive! Except that one girl, 13 at the time, who didn’t want to turn 16 and drive a car because all she wanted to do was die. She could lie to your face, but the truth always prevailed on paper. And it did that day and she thought nothing of it.

Until a week later, Valentine’s Day 2003, I found myself in the office of that PE coach with a psychologist. She was asking about my answer to that question. I would meet with her for the rest of the school year. I went to my family doctor and was prescribed a very low dose of antidepressants. They can fix me, I thought. This is fixable.

But things only became worse. My attitude was chalked up to being a spoiled rotten little brat but there was more going on. I would often pray myself to sleep, asking God to please just let me die. Dear Lord, please just take me so I don’t have to do it on my own and hurt the people who love me even more. Please don’t let me wake up in the morning. Please, please, take this hurt and this pain. Let someone else, someone who is happy and not fucked up have this life they want and take me because I don’t want it.

I couldn’t sleep most nights. I would take OTC sleeping meds in order to sleep and they didn’t work half the time. I would still be up when my parents woke up for work in the morning. I missed a lot of school which became kind of a joke in the school. If they only knew the battles I faced, it probably wouldn’t have been quite so funny.

That summer after my original diagnosis, I finally gave in. God wouldn’t take me but I couldn’t take the pain any longer. I was 14. I took a shower, I started with my bottle of Zoloft and then one by one, I wiped out the medicine cabinet. Once again, my words stepped in to save me. I had written a goodbye in an online journal that very few people knew about but the right person read it at the right time. My goodbye ended up saving my life. Over 300 pills later, I found myself in the ER fighting a tube going down my throat to pump my stomach. I was pissed. So very mad.

Well meaning friends and family came by so I threw on my happy face while in the ICU. One person while I’m sure she was well intentioned did more harm that good. She came in my ICU room and put her finger to my chest then pressed and asked if I didn’t know God. After she left, I attempted to remove my own IVs. Yes lady, I knew God. In fact, I had begged him to take my life and He wouldn’t. Quiet whispers (not quiet enough, I heard them) spun through our community. By the time I was transferred to the psychiatric ward at a larger hospital in Birmingham, I was supposedly pregnant and had apparently been molested. Because this girl, she had nothing to be depressed about. So let’s make up some quick rumors- let’s give her a story to go with her depression.

While in the psychiatric ward, they tried many medications. When you are severely clinically depressed, you are like a guinea pig. They don’t know what will work and when you are only 14, that really complicates things. I was still pissed that I was alive and even madder that my parents left me in that place. I refused to see them one day and also refused to see a local pastor. Finally, the doctors landed on the right medication and I went home. We had worked on coping skills and I was only allowed to leave the hospital with an agreement to go to therapy in Huntsville three days a week. I quickly graduated that program- I slapped on that happy face and I was in a class with the kind of teenagers you think of when you hear “depressed” so I looked like I was doing awesome. My hair was fixed; I had on make up, and a big smile, the cuts on my wrist hidden under bracelets. I rocked that program. I was definitely doing better but I was still far from your typical 14 year old.

I quit every sport and I lost the majority of my friends. They were all typical 14 year olds and here I was, the same age but completely different. Who could blame them? No one was sure how to act around me.

Unfortunately, one of the side effects of my medication was anorexia. Yes, no joke. While I became able to cope with my depression, I became anorexic. On the rare days that I would eat, I would end up vomiting. I lost 40 pounds and the doctors threatened to take my medication if I lost more. Thankfully, I did not.

Justin and I became friends about 6 months after my suicide attempt. He didn’t know me then so he held no judgments. Though he was originally from here, he had moved for several years and had just moved back so he missed me at my worst. He didn’t see me as “that girl” and that was freeing for me. I was still very much struggling, but he never tried to fix me. He looked past the scars and fresh wounds on my wrist and my crazy moments. He took me fishing and he had no expectations of me and he taught me how to have fun. That summer holds some of my fondest memories and those memories are because of him. I have absolutely no doubt that God sent him to step into my life and change the course of it forever.

prom 2005

I ended up playing one more season of softball and another season of volleyball, but the spark was no longer there for me. The things I loved were now chores and after a season of each, I knew I was done for good. I could no longer relate to my peers.

It has now been twelve years since my original diagnosis and suicide attempt. I never attempted suicide again and I never will. I learned not only to cope with my depression but also to recognize when things were becoming dangerous. My senior year of high school, I was near suicidal again and made the decision to quit school (a controversial decision) and take care of myself. Everyone had an opinion on that decision and many of my classmates flat out made fun of me for quitting so close to graduation, but it was the right thing for me and I knew it.

I won’t lie- I am still not the most mentally stable person you’ll ever meet. I struggle daily. I have not sliced my wrists since December 2007 and I am proud of that. I have good days and bad days. The past 2 years have been very difficult for me and they have no doubt taken a toll, but I am able to cope. On the worst days, I am able to see through the darkness and know that there is light somewhere. I may not always know where or how to find it, but I know it’s there. God blessed me with an angel of a husband who stands by me even on the bad days. I know that I am not an easy person to love, but he does and he does it well.

I began writing this after reading an article that stated Robin Williams did not die of a disease, but from a choice. I don’t know his story, but what I do know is that my story began when I was only 12 years old and I didn’t know what depression was. How could I choose something that I didn’t know existed? It was not a choice.

For those of you who believe that this is simply a spiritual problem, I am going to go out on a limb here and say that you have never been clinically depressed. I believe that God has given me this story for a reason. He put me on this path and I pray my way through the day every day. I have prayed for God to take this depression from my life, but if I had never walked this path, how would I reach out to help others? If I had not faced the darkness, I would not be able to reach into the night to remind someone else that morning does indeed come.

Depression is a disease. Clinical depression is different than being depressed for a few days. Depression is not a choice. It is no more a choice than cancer. Sometimes with cancer, patients choose to let go and refuse treatment because they feel the fight is not worth it. It is the same with suicide- when I swallowed 300 pills at 14 years old, I thought my quality of life was not worth the battle. I had fought and fought, I had taken medication and talked through it, but my quality of life was not improving. I thought I could remove myself as a burden to those who loved me. I thought I was doing the world a favor.

With a clear mind now, I know those were all lies. Depression says “you are worthless” and “life isn’t worth living” and those things are not true. Morning does come. There is light, but you have to hang on. And hang on. And hang on. And fight. And fight. And fight. If you feel as if you have no one to fight with you, I will fight with you. Do not let this society make you feel as if you are beyond repair. You are not beyond repair. You may come out with a few scars, some scratches and dings, but if you are living and breathing, I promise it is not too late. Seek help. Your first steps may not work, but keep going. Keep seeking, keep fighting, and keep trying. On the other side, beyond the darkness, there is a light and a life worth living. Yes, even for YOU.