The Other Night....

The other night, I carefully tried to get into bed without disturbing my sleeping husband. He'd gone to bed early with a terrible headache and I moved quietly to avoid waking him and despite my efforts he woke anyway.

He lifted his head a little, rolled over to my side of the bed and opened his arms, motioning for me to crawl into his arms and I happily obliged.

He wrapped his arms around me and drifted back to sleep as I lay there I thought about this last year; how hard it's been, how very difficult it has been, how much uncertainty there has been. SO much uncertainty.

But there has been one thing I haven't questioned, that I am completely certain of. The love, comfort, and safety of the man lying next to me. I love my husband in ways both so very simple and so very complex. I adore this man. I completely love this man. And I know he loves me.

Of that, I am completely certain.

Tangled and Tethered

Olivia has been battling breathing and airway issues since birth. She has always been squeaky and made a stridor noise while breathing and often turns blue when she cries. We knew very shortly after she was born that she had laryngomalacia, an issue we were told could take up to 2 years to correct itself. So we have always attributed her noises and lack of oxygen during hysterics to that.

Fast foreward to March 2010 and the whole RSV/Hospitalization debacle. Since then, she has had over 12 ear infections. Getting tubes seemed obvious. While seeing her ENT, Dr. F, to set up the tympanostomy procedure, Dr. F decided to take a look at her larynx and see how it looked, as sometimes babies with laryngomalacia have breathing problems and need to be intubated during procedures.

After he did the scope, he sat back, furrowed his brows, and "Hmmm"ed for about five minutes before finally saying, "I just don't like it. I don't like what I see in there." And off to specialist, Dr. A, we went. And a tympanostmy, laryngobronchoscopy, and MRI were set for October 11th at a hospital two hours away. We were told to expect about 6 hours from start to finish.

On the 11th, we left at 3 am and made our way through the dark or morning to the hospital. Olivia was so happy, charming the nurses, making the anesthesiologist laugh, and attacking her daddy while we waited for her appointed time. The nurse gave her some "happy juice" and my baby went from ultra-mellow to....well, more ultra-mellow, and she gave of us a funny smirk as the carried her back into the operating room.

When the procedures were over, Dr. A told us she would like to keep Olivia for a while to monitor her oxygen, see what it does, and to perform more tests and procedures to rule out other things that may be affecting her breathing. Olivia has paradoxical vocal cord motion. Basically, her vocal cords don't open and close like the are supposed to. Actually, they hardly close at all, putting her at risk for aspiration, pneumonia, speech delays, lung infections, and various other ailments. She also has severe reflux (How did I not know this?). It's likely the reflux is making the PVCM worse. The vocal cord issue is also affecting her breathing (at least they think this is what is happeneing). Olivia's O2 sats were dropping dangerously low 20-30 times a day.

Brandon and I were completley unprepared to stay. He had only taken one day off work for the procedure and would have to drive home, leaving me there. (Thank goodness for hospital hospitality and Wallskog sisters to make sure I had clean clothes and enough food to get me through the next few days.)

The next day, they did a swallow study, a gastric emptying study, and an EKG. Olivia smiled through it all (okay, most of it) and other than being a bit bored, she was completely happy.

One day turned into three days before we were finally able to go home. (Thank you Tasha and Brittney for figuring out a way to get me home and for getting up at the crack of dawn to come get me.)

We learned: 1- Olivia's vocal cords are crappy. 2- Liv's reflux is really bad. 3- Liv's tummy empty's super slow, making the refulx worse and making the breathing issues worse. 4- She is no longer allowed to have chocolate, peppermint, or fried foods (as if I gave her that stuff anyway). 5- She will now be on oxygen/aggressive meds for an undetermined amount of time. (If these things don't help, she will have to have a trachea. And please, let's not.) 6- She will have to be followed closely by her doctors for quite some time.

This has been a strange adjustment for me. Just...different. A little bit hard, and a little bit sad.

So. Olivia now comes tethered....tethered to a wall, tethered to a tank. Other kids are intrigured by her new facial accouterments, Granny Kaye calls her her tubing her new "jewelry," and it hasn't seemed to slow our little one down in the slightest bit. She is figuring out her limits and just exactly how far 25 ft of tubing can get her.

So for now, we are managing. And so long as her face continues to look like this.....

.... we are going to be just fine.

{One} Year Old

Sweet Olivia,

I love you in a way I still can not completely understand. It is a love bigger, fuller, and more consuming than you can ever imagine. I love you, every little bit of you. "I love you through and through."

Happy Birthday, sweet baby girl.

Love,

Mom

...

This morning I took Liv for an early morning jog. The dew of summer is gone and has been replaced with the crispness that assures me that fall is near. I have more eagerly anticipated the seasons changing this last year. They approached with the promise of new milestones, growth, potential, changes, the chance to move forward; all things I so desperately need and crave right now in life. However, this year has been hard. Just really, really hard. All the changes new seasons have promised have failed me. Many doors have closed in our faces, health compromised, frustrations have been all-consuming, promises made to us only to be broken, and there is the feeling of being completely cemented in place.

This morning felt different. I feel something is going to change. Call it inspiration, call it blind hope, call it denial. But I feel it. I am hesitant to believe it, mostly because I want it so badly. Each time my foot hit the pavement I thought, "This doesn't define me. This doesn't define our lives. My frustrations do not define me. This will end. It will. " There is a quote by Pres. Gordon B. Hinckley that has been running through my mind the last few days:

Anyone who imagines that bliss is normal is going to waste a lot f time running around shouting that he has been robbed. Most putts don't drop. Most beef is tough. Most children grow up to be just people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. Life is like an old-time journey-- delays, sidetracks, smoke, dust, cinders and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.

.

I do not expect bliss, I never have. I know how to work hard in my life to make things work. B and I have a good marriage because we know how to work at it, how to communicate. I know how to get through days when motherhood has reduced me to tears. I know how to carry my friendships because I know how to love and appreciate. I am capable and strong, and I think some how I have forgotten this. I need to remember.

I am not less eager about fall and winter. There is good there. There has to be. I will wait, right here, ready to embrace it.

11 Months

My army-crawling, 8 toothed, happy, curly-haired, sqeaky baby is 11 months old. I can hardly believe it.

On Mattering

A few weeks ago, I started a job doing legal transcription. I was excited by the idea of it being a step away from medical, something interesting and different. When my editor sent me my second case, I was intrigued by the idea of it being a murder case and set straight to work.

I loaded my files and was surprised when the first one opened as a video. Generally, the files come only in audio form. I pressed play and the image of a black man in an orange jump suit came to life. He was so big, so tough looking, the scowl on his face revealing nothing. I listened intently and worked my way through the first few hours of the video.

Tough, a gang member, robbery, murder, drugs, guns, money; all things I would expect to hear in a case like his.

I was amazed at the way the cops unraveled his story, how every lie he told fell apart. His world fell apart at his feet, right before my eyes. It was only a matter of time before the truth began pouring out....and my heart began to ache for him.

As the truth began to reveal itself, the young man retreated to the corner of the room, hugging his knees against his chest, sobs racking his enormous body. He sobbed about his involvement (he had not actually been the murderer), he cried about his future, and he sobbed about the deceit by his so-called friend and brother that had landed him there in the first place. Most devastatingly of all, he cried for his mother. Rocking back and forth on in the corner of the dingy interrogation room, he pleaded with the detectives that he would tell them the truth if they, in turn, promised that he could give his mother a hug. (Much to my relief, the detectives vowed to make that happen.) The rough exterior gone, the vulgar language melted into tears; this hard, rough, man wanted not his freedom, not his friends, not his girlfriend, but his mother.

Tears began to pour down my cheeks as I listened to his pleading. I felt his tears in every inch of my being. His sobs spoke to the mother in me and I felt the familiar fierceness I often feel when I think about my own child and how intensely and wholly I love her. While his actions were inexcusable, I couldn't shake the actual physical pain I felt in my heart for him. I felt his longing, and it will haunt me forever.

I know many mother's, including myself, that worry unceasingly that what we are doing actually matters. Does my child need me? Am I ever doing enough? Does what I'm doing actually make a difference? In that young man's tears, I understood that, yes, I am and yes, it makes all the difference.

Confessions: Part 7

** I don't know how many times a day my internal monologue says, "Oh, don't mind me. I'm just the mom," when encountering strangers, non-strangers, and really, no one necessarily particular.

**Girls Camp? Honestly, not the best experience I've ever had. Being unprepared, short on information, having a lack of general knowledge and know-how, and a girl breaking her arm did little to enhance the experience. End result? Me, a sobbing, blubbering mess by the end of the week. (But that had more to do with a little bit of "Bishop Inspiration (or intuition)" than it did a bad camp experience. That is another blog for another time, but I digress.)

**Because of said "Bishop Inspiration," I have spent much of the last week in tears. The jury is still out as to if this is actually a bad thing.

**I have a job (!) and so far I am really loving it! First case? Child abuse- So sad. Seconds case? A murder trial- sad and interesting.

**Said job makes me feel very voyeuristic and nosy. It's strange to be paid to hear someones secrets and confessions.

**I'm struggling with self-image right now, in a big, ugly way. It needs to stop.

**I have a lot on my mind that I want to talk about, that I have a need to verbalize, but I can't seem to make my mouth say the words.

**My eyes started going bad during pregnancy and have never recovered. The day I would need glasses again has come too soon.

**Lately, I have been so tired, my head starts to tilt sideways without my even realizing it until my head is touching my shoulder. Problem?