When winter halted metro Atlanta - and I had a newborn baby boy

When the snow/ice storm of late January hit Atlanta, I was in a hospital bed. A newborn baby boy quietly grunted and snored next to me, in that newborn fog of only semi-consciousness. My husband was watching the winter scene unfold out of our one window to the outside world. We saw the mass exodus of hospital guests and employees sliding out of the parking deck. Over time, the sound of ambulances became more and more frequent as car accidents built up on the roads.

 

I was sad that day, since our plans to see Amelia were cancelled; it was not going to be safe for my parents to get her to the hospital from our suburban home. They picked her up from school for early dismissal and within minutes, the under 2-mile distance from school to our home was iced over and traffic was at a standstill. With the help of GPS on a tablet, they were able to navigate another road and make it home. Other nearby friends were reporting hour-long drives just to get home -- no more than a couple of miles! The school bus was one hour late. Parents sat in cars at the stops, waiting and worrying. Other friends began texting, reporting 4+ hour drives just to pick up their children and get home. Some didn't make it back to their own homes and endured nights with no PJs, no favorite snacks, and no pacifiers, loveys, or other habitual comforts for their kids.

Love does not live happily beside fear. #DomesticViolence

It's an old joke; my husband and I laugh about buying a shotgun when our daughter begins dating. We all want to protect our children from any hurt whether it be physical or emotional. No one messes with our babies!

But sometimes life takes people down a dark path and they can feel helpless.

October is Domestic Violence Awareness month.

Ladies, know your worth. Understand that your worth is bigger than you may have ever imagined. You are powerful, strong, beautiful, and have the ability to overcome life's hurdles. Sometimes love sneaks in and turns everything we know upside down. Sometimes, and unfortunately, it is not for good. Love does not mean being told where to go, how to dress, to when to speak. Love does not live happily beside fear. Or manipulation. Or spite.

Strabismus that just won't quit

Ugh... Amelia's eye issues will continue for a while.

After now three eye muscle surgeries, we got word yesterday that she still has a fairly significant eye turn. We are not able to step off this path yet. One year has passed since surgery #1, and we are tired and discouraged.

New wonders, reborn

My daughter's birth now seems long ago. The memory is disjointed, some parts sharp and other fuzzy. She was a wonder, a joy. She was something that scared the heck out of me. Raising a human being? Creating a personality? An actual PERSON? I had no certainty that I was up to the task.

Mental illness is not evil

My friend posted a very wise and extremely brave post on Facebook today. She gave me permission to share, although I choose to keep this anonymous.

I wanted to project her words beyond her Facebook friends, because this is a very important discussion that our nation needs to have. No more hiding this very real issue.

To my dear friend, you floored me today. I am proud of you and love you! 

- - - -
I am coming out of the closet. Not that kind of closet, another one. For the past 12 years I have struggled with a mental illness. It's been a "dirty little secret" I felt like I had to hide. I have a severe form of bi-polar disorder. 

I left my heart on that table

As a mother, I long to hold my little girl tight and keep her close. I stand prepared, ready to fight off the world's evils and dangers. I watch over her sweet heart, wary of those who might cause her pain. I want to shield her from lumps and bumps and scrapes.

Sometimes, though, being Mom means I have to step back.

Surgery update

5:30 p.m. here, six hours after we left the surgery center. Amelia slept for a few hours but has since been very fearful and tearful. She has moments of calm and is eating a bit, so I know we're going to make it through this day!

Her eyes are their usual red after such a procedure, but otherwise looking great. A good night's sleep is going to work wonders on all of us. Then we begin the long 8-week waiting game. Last time we had a "perfect" six weeks, this time we need to make it past eight. Eight weeks until an all-is-well report. We are longingly looking towards that day for sure.

The day is here... again.

My sweet girl has eye muscle surgery again today. The first one was in January. The second was in March. In September, we tried bifocals for her. Surgery number three is our only remaining choice. Once again, we cling desperately to hope that this time will be "it". I am feeling good about it and look towards a happy day when all of this is in life's rear-view mirror.

Send us happy thoughts and prayers if you can spare a few today.

Being a friend for the "after"

I have a few friends in the midst of serious medical issues with loved ones. I see so many people reaching out via social media, offering kind words, prayers, and virtual hugs. Often, a question is repeated, "how can I help?"

Those words bring me back to a time where I was the person disseminating news of a dear loved one's trauma and recovery. I was being asked, "how can we help?". Sometimes, a tangible answer would arise out of a current need - a lunch here, a phone call there. But most of the time, we simply asked for positive thoughts and prayers.

When a crisis happens, a crowd of caring people rises up to voice their concern, share their support, and to offer assistance.

If it isn't right, it is not the end

I have been known to scoff at all those quotes and images friends post all over Facebook these days. And now I must finally admit that one made me sit up and take notice.

"Everything will be alright in the end. If it isn't right, it is not the end." 

Through all of Amelia's eye issues and unsuccessful surgeries, I have often floundered, gasping for breath, in the quicksand of guilt and worry.

Too hard to let go

When we are in the "ups", the little things shape our world.
Smiles. Crayon drawings. Laughter. Music.

When we are in the "downs", the fog rolls in to cloud our minds and stifle our hearts.
What ifs. Worries. Guilt.

Only parents can understand the power of parental guilt, the heart-squeezing fear of doing something utterly wrong. When rational thought attempts to break through the clouds to let in some light, the guilt can smack it back with tremendous force. I believe there is no greater power on the face of this earth.

An event dear to my heart - and my little girl's eyes

I recently met (virtually) some sweet women from Peeps Eyewear and LittleFourEyes.com. They introduced me to an upcoming event they are co-sponsoring called The Great Glasses Play Day. The event celebrates kids who wear glasses, but it also has an important goal that is at to my heart: to increase awareness of early childhood vision health.

Three surgeries in nine months

Friday was not a good day. After Amelia's second eye surgery, she looked fantastic. Her eyes were straight for a full six weeks. Six weeks and one day post-surgery, however? We noticed some shifting again. She was no longer always looking at us with two eyes. We tried to make excuses... hoped it would go away.

But yesterday, we went in for her 12-week post-op check.

I hid my tearful face from my daughter in the waiting room. Nine weeks prior when we scheduled this appointment, it was with joy. It was to be our final visit before she "graduated" to an annual check. It was supposed to be our last one in 2012.

Not to be. We are looking at a third surgery in late September. Third! In a span of only nine months. At age four.

I was miserable most of Friday. Thankful for a friend who got us out of the house for some kid playtime; probably the only thing that kept me sane that day. At night, I peeked in on my sleeping little sweetie and felt my heart crack. I allowed the guilt and doubt to creep in. I felt like I did not protect her.

It is now Sunday night. I have had time to recover from the shock and heartbreak. I cried on my husband's shoulder. He shared his fears and sadness, but we agreed that we would move forward together as a family. As we have done twice before.

We are pretty strong with our power of three.

The doctor did allow a twinge of hope. There is a chance, albeit a small one, that this is an anomaly in her healing. What he called "a blip on the radar." We purposefully delayed the next surgery just in case. If we have any right to a miracle, I wait hopefully for it. Trying to keep my own eyes open for a glimpse of change.

Maybe, just maybe, September's pre-op will show a change for the better. If not, we will survive.

We can do this.

A promise

Three and a half months ago, I looked into her sweet face and made a promise.

"I promise, everything is going to be okay. We're going to make your eyes better."

We took her into her first eye muscle surgery before the sun came up on January 12th. The procedure itself went okay, but the stress was hard to handle. The following days and weeks were even worse. We waited and hoped, but her eyes looked wrong. Worse than before. She complained of double vision, told us her eyes were "sick". All we could do was wait and try to push away the bad thoughts that we did this to her.

Even though this was a minor medical issue compared to all those "what ifs" in life, nothing I have ever experienced feels worse than thinking I screwed up my beautiful daughter. My husband and I were on edge, bickering. Stressing each other out. I was not sleeping. One good positive day was often followed by two days of near-paralyzing worry.

I promised her it would be okay.

Finally, eight weeks after surgery and after many follow up doctor visits, we were told that a second surgery would be needed. The plan was to put the muscles moved in surgery #1 back to where they were - and move a different muscle. And we were told it had to be done quickly - within a few weeks.

The guilt I felt was tremendous when we had to tell her she'd be going through surgery again. I was afraid to promise again. But on March 29th, we pulled her out of bed once again and made the trek to the Children's outpatient surgery center. Surgery went as planned again. Recovery was much worse than last time. She slept all day, cried when awake, and vomited at night. She woke in the morning terrified because swelling prevented her from opening her eyes. I was still afraid to make any promises.

Yesterday morning, we had her 3-week post-surgery check. The appointment took all of 10 minutes. She looks great! No more squinting, no more closing an eye, no more tucking her chin down to see straight. No more "moving eyes".

She looks great. She feels great. She is happy that we don't have to go to the doctor again for almost three months. I took a huge breath. I think maybe I've been holding it for months.

It took a while, but I kept my promise to my girl.
Her eyes are better. Everything is finally okay.

Writer's Workshop prompt this week: A promise.

I am not available this weekend!

I am so tired.
I miss lazy, no-plans weekends.
It has been at least a month since I felt rested.

It began with a nasty cold virus that hit all three of us, nestled itself snug in our ears, and stuck around for weeks. Then the vacation packing. Trying to avoid excess airline bag fees, it took days for me to strategically choose and place everything so we could check only one bag. The night before  vacation? I awoke at 2:00 a.m. and dashed to the bathroom. On the way there, I passed out cold on the floor, waking my husband with the loud thud. Then I vomited. And hit my head a second time when I passed out again. I was sweaty and sick, on and off until 6:00 in the morning. We had to be at the airport by 7:30!

That day was the most horrible travel experience ever. I was not vomiting anymore, but felt weak and tired and just plain awful. I considered staying home, but they would be cruising for a week! And I knew this would pass within a day. I couldn't even concentrate enough to look for a flight the following day. Despite my master packing efforts, we checked two bags because I could not bear to carry anything. I pushed my body and fatigue to the limits, making it through the flight, the rental car process, and an hour drive to my mother-in-law's house. I slept for many, many hours. Daddy heroically tended to Amelia's every need for a full 24 hours.

The cruise was fantastic. I was better (and even eating a little) by check-in time and vowed to use sanitizer and Lysol wipes religiously. I definitely did not want anyone to get sick from me! And thankfully, no one did. We sailed and played and ate for a week. I felt good, but it was quite an active time. I could have used a sleep catch-up day for sure.

Upon arrival home, I tackled the mountains of laundry. Got Amelia back to school for one day while I went to the office. Then she had eye surgery. Stress on top of exhaustion! This, her second time, was much worse than before. She was crying, frightened, and miserable. The first day culminated in vomit all over her bed. She awoke the next few mornings early, scared and crying because her eyes were swollen and sore. 

I hosted a baby shower that Sunday. I went to work that week. Then guests began to arrive at week's end. 

Birthday party.

Easter.

Late nights because Amelia was used to her loose vacation schedule and lack of rules.

Today, I am hanging by a thread. Aches persist. I yawn and yawn and yawn. So absolutely ready for the weekend. No early plans. We all need some serious lazy time! 

I'm not even going to write a blog post.

Catch ya Monday!

Going under again

My little girl is having her second eye surgery this morning. She knows the process this time, and she is not happy about it. She has already told me that she will not wear the gown... that she will not swallow the yucky medicine... that she will not be a good girl this time.

I feel for her. I don't want her to have to do any of those things, either. But I want to see her eyes, both of them, looking at me again. I want to know that she won't suffer teasing or migraines or frustration due to her eyes.

I just want it all to be okay again.

Surgery is scheduled for around 10:00 a.m. Wish us luck... again.

I know I am praying - again - for the absolute best results this time.

We will know in about three weeks if we achieved success. Another very long three weeks.

And, exhale.

I did not realize it until this afternoon, but I believe I've been holding my breath for months. From the moment we scheduled the first eye surgery. Through the surgery. While we stressed and worried about the not-so-ideal results we were seeing. And as we scheduled surgery number two.

Today, we saw a second physician. We gave him no information, just that she had one surgery in January. Three people at the office tested her. She peered through prisms, lenses, and circles. She read letters, named items, and described a clown hanging on the opposite wall.

The doctor was kind and open. He acted as if he had all day to spend just with us.

And then...
He gave us an identical surgery plan as our first doctor!

I could not be more relieved. We are on the right track. We made no bad decisions. We know what to do next. March 29th - we are ready.

Deep breaths.... ahhh. Those feel pretty good.

Here we go again

Surgery number two for our precious little girl is on the calendar.

It is sooner than we expected.

We hoped for a worry-free vacation and birthday celebration before having to deal with this again, but the doctor trumped our plans.

"No, it needs to be done quickly."

So here we go again. I tell myself that we're ready. I tell myself that it will be okay. I suck it up and show my strong, brave face to the world.

80% success rate this time. Same success rate as last time - and see how well that worked out? Humph. But 80% is good....

My child is healthy. My child is happy. We are blessed with a lovely home and loving family. We have fantastic neighbors and friends. We have nothing to feel down about. We are so lucky.

Right?

I figure if I keep telling myself that, it will help.

March 29th - here we go again.

Cheering on a milestone

Complete. As in, "it is a complete spinal cord injury."
She will not walk again.

Broken. As in, "those vertebrae were broken, shattered, upon impact."
She won't feel that again.

Anyone close to my sister-in-law remembers these events vividly. Despite the passing of time, we recall each desperate second, every gut-wrenching hour of waiting. We still feel each individual tear that rolled down a cheek and the sting from our reddened eyes. Voices still echo quietly, hauntingly, every "what if?" and "why?".

We ached for her, with her. We were angry on her behalf. We worried and scrambled for the best thing, those next steps. What to do?

We absorbed volumes about spinal cord injury in a very short time.

During those first days, we strained with each tick of the clock. Days were interminable, weeks even longer. The future was shrouded in a thick fog, and we had no  vision of what life looked like on the other side.

Today, the struggles have not vanished. But the towering pyramid of pain and fear has been reinforced, steadied, with a new found strength. A new normal. And today, my sister-in-law returns to work for the very first time since the accident.

She will drive herself there. She will play an important role in the education of young children once again. It is her calling. She will laugh and smile and feel proud of all that she accomplished.

We will be the crowd at her side in spirit, and we will feel with her from afar. We are here cheerleaders, now and forever. So very proud of this new poignant step.

- - - - 
This week's Write on Edge RemembRED prompt: 
Write about a time when something was irrecoverably broken and the ensuing scramble.
I had to dedicate today to my SIL, and this prompt fit right in.

It hurts.

Trying to stay positive. But it hurts.

The opthamologist saw Amelia this morning. We will be moving forward on a second eye muscle surgery in about 7 weeks.

My brain is at war with itself. A portion still thinks we did the right thing - her exotropia could have cause her headaches, reading problems, and plain old aggravation. She herself asked us to "make her eye stay still". That same portion of my brain knows that a second surgery is needed in 20% of patients; it is not unusual. But the emotional side wonders why we ever made this decision. Why did we do this to our child? What if she never had difficulties with her eyes the way they were? No one ever noticed that her eyes moved in the first place. What if we moved too quickly into medical intervention when she could have been fine just left alone?

If we had been told it was medically necessary, I think we'd be stronger right now. But we were told it was up to us. So we chose. (Why did we choose?!?)

My eyes well up with tears as the guilt presses down. I breathe and push it all away. I need to be strong. I need to be optimistic. I need to grasp onto some faith and find hope. This bump in the road could very well be a distant memory by summer. I cannot express how much I hope for that. Oh my God, if You can hear me... please know how much I hope for that.

So, say a prayer for us and wish us luck. Six more weeks of waiting, then we start this process all over again.

If I get through this, I may have to change my name to ToughMama.
Because this is absolutely the hardest thing I have ever done.