Monday, January 26, 2009

Spina Bifida Monday

I'll try something new. Every Monday, I will try to highlight some facet of Spina Bifida. Today its a motivational clip on a young girl living with Spina Bifida.

I was talking to someone today about Esra's potential and what the future has in store for her. Its hard to know how her spina bifida will affect her long-term. But that won't stop us from doing as much as we can to give her chances grow and learn. I have a list of ideas in my head of what we can do with Esra after seeing this clip about a little girl born with Spina Bifida.

Just like Esra, her impaired nervous system prevents her from using her legs to walk. Her name is Abigail and her family has encouraged her everyday. They are accentuating every part of today and helping their daughter and sister succeed and find happiness. I am so impressed by Abigail's abilities and her eloquence, daring and strength. She swims competitively and is trying other sports. I would love for Esra to meet Abigail and other children like her.

Saturday, January 24, 2009

Musically Inclined

We just got home from NYC. I can't believe that the $95 parking ticket hidden under our wiper blades stayed put after driving 80 miles an hour for the entire stretch of Connecticut.

My companion on the drive home was Delilah, of course. (Sam and the girls were sound asleep, so, I could revel in all the sappy dedications and requests.) This show transmits warmth and acceptance and commitment. And I always get a little teary after listening for awhile. I remember one particularly difficult night when Esra was a newborn and struggling for life in the Newborn Special Care at Yale-New Haven. I had stayed all day and into the night with her. She was showing signs of a serious infection. Things were so unsure. But my energy had left me and I had to go home. There wasn't anymore I could do.

So, I said a prayer and got in my car hoping I could make the hour drive. I turned on the radio and found Delilah. Her caring voice, tenderness to her callers and uplifting songs got me through the dark and seemingly empty night as I drove further and further away from my daughter. After a few days, things improved for Esra, and after a few more surgeries she was ready to come home. Sam and I were there for her as much we could be. In the moments that I couldn't be there, I always felt buoyed and supported. Looking back, surrounding myself with positive uplifting sounds (music, sermons, affirmations, etc.) always helped me get through the hard moments. And whenever I'm driving on dark, cold nights, like tonight, I always turn on Delilah and rejoice in the miracles that happened then and are happening now for our family.

Going with that vain of Delilah-like songs, I am enamored with this song that Cathy at Bits & Pieces posted:


How The Day Sounds from Miky Wolf on Vimeo.

Thursday, January 22, 2009

Cleared for Take-off

I feel like the last few weeks we've been stuck on the proverbial runway of life, ever taxi-ing and never quite taking-off.

Yesterday, I took Esra to Boston for an acute visit with the Neurosurgeons. They were amazed that she overcame such a huge fall. But they were especially unconcerned after seeing her scans (and her happy wave and bright voice pointing them out of the exam room). We did go over the MRI, though. Since we were there, right? Essentially, Esra's Chiari malformation is prominent and THE reason behind her eating, swallowing, breathing and speaking difficulties. They would surgically intervene, but not on someone her age. Any removal of bone will most likely regenerate in children, so they will wait and watch. But we will need to ever watchful for signs of excess compression. They symptoms are pronounced headache and difficulty in arm movement. Other than that, she is as functional as she can be considering a major part of her brain is being pulled through her skull. An amazing gal, our Esra.

Still, I'm interested in a second opinion.. So, time for some more research. But its good to know that she did not suffer any internal damage from the fall. In fact, I think she fell on her "be more spunky" spot. Her teacher and therapist today commented on her energy and spunky attitude today. She is very happy to be back doing what she loves to do.

Sam's dad is also full of excitement and spunk as he is making excellent progress as he heals from surgery. The brain tumor was cancerous, but all of the tissue was removed. He'll need chemo and radiation, but that's at least a month away. He was transferred to a rehab hospital yesterday and he is optimistic about walking out of the hospital, on his own, next week. He is invested in an intense regimen of PT, OT and Speech Therapy, much like what Esra does every week. His goal is to regain 100% of his function. Now that's spunk!

Well, now time to rest. I am grateful that the anxiety of waiting for one's plane to take-off eventually goes away as the plane ascends into the wild, blue yonder. One can finally feel at ease to dive into that good book or scan the magazines that you saved for this occasion, or just sleep. Sounds so nice.

Sunday, January 18, 2009

Tending Part II

We are home. {between this sentence and what I write next is the following events: Esra falling down the basement staircase in her stander, landing on her face on the concrete floor. Screams, panic, calling 9-1-1, Estelle goes to a neighbor she's never met before, ambulance, x-rays, cat scan, a frightened little Esra strapped to a back board, lots of singing, more screaming, using sign language to thank the radiologists and good-bye (or go-away) to the nurses and doctors, a few vocal prayers so Esra could here them, angels-friends bringing us dinner and then, finally sleep, and we are given the all-clear to go home. No broken bones anywhere, no concussion... Just a scraped up face, a bloody nose and a big old goose egg on her forehead opposite her shunt. Miracle of miracles!}

So, I was sitting at the computer when Esra fell. We were getting the house in order after returning from a short trip to Manhattan, where Norm was admitted. We arrived with girls in tow the night before the surgery. He was so grateful to see the grandchildren. And he was buoyed by the sight of his two bright and strong sons standing on either side of his hospital bed as they administered a Priesthood Blessing to him. {you'll have to read more about that on Norm's forthcoming blog.} We expressed our well-wishes and spent the evening at a hotel on the Upper East Side. The next morning, we got updates from Lynda as Norm was in surgery all morning. We stayed put to let the girls play. I did a little shopping in the city for Estelle's birthday. We arrived at the Recovery Waiting Area and Sam and Zack again spent much time with Norm while he recovered.

So, fast forward to now: I'm still in such shock the it happened but more so that its over and she's okay. After this week, one would think there would be more devastation and grief happening in this little family considering what has occurred. If we were trying to sell copy, I guess the headlines would read: "Cancerous brain tumor leaves patriarch of family immobilized and hopeless." "Paralyzed little girl gravely injured after fall down stairs. Parents devastated." Instead, this is what is being written, "A bright future lies in store for optimistic fisherman and his family. Tumor removed successfully and replaced by immense joy, gratitude and love." And, also, "Brave and cheerful Esra, a little sore but very thankful and happy after frightening fall."

I am learning a lot about tending my secret garden this week. I really don't know where to go next, because I feel compelled to dwell in the negative and be stunned and shocked and tell everyone "wo, is me", but, its not true. If there were a geiger counter for ministering of angels, we'd be off the charts this week. The tender mercies that have come to Norm and Lynda, Sam and I have been watched over and blessed with immense abundance as we work through the events of the past week.

Which secret garden are you tending?

Thursday, January 15, 2009

Tending

I've felt exceptionally lonely and exhausted today. I've been thinking a lot about which secret garden I've been tending by dwelling on my state. {see Thomas S. Monson quote in the left sidebar.} I can't help it. But, thankfully, I was helped by some sweet friends. Their service helped buoy me through some of the tougher parts of the day. But I've been home mostly for the past three days. And its been cold. Those things don't help either. The girls don't have snowsuits or a sled that can fit the both of them. I'm thinking its time get all of those things plus some snowshoes or cross-country skis, so we can get out and enjoy the cold weather. Its hard though to do much outside with Esra. She can't move in the snow easily and she gets cold quickly. I wish I had an assistant to help me shop and remember all the things that the girls and I need.

Sam is diligently assisting his parents. He has been such a help to them. The appointment in NYC gave them much insight into Norm's condition. The composition of the tumor is unknown, but possibly connected to his previous melanoma. Plus, it seems to be located on the perimeter of the brain. So, Norm is scheduled for open brain surgery on Saturday. The neurosurgeon feels that it is best if Norm is admitted and remain under observation until then. Their younger son, Zack, is flying in to be of assistance tomorrow. I think the Lord has really prepared the family for this. He was all set to go to grad school this semester, but some paperwork was lost, or some other bureaucratic excuse. Zack has undergone multiple open heart surgeries, so his experiences and devotion to his parents is appreciated.

Sam and I spent an hour trying to figure out how to get our little family to NYC to visit with Pop and Grandma before the surgery. I certainly don't want to drive, but Norm and Lynda weren't anticipating being admited, so they need things from home. So, someone needs to drive the minivan back to the South Fork. Plus, Sam's car is still at his parents house. A very tricky thing. Someone will be spending a lot of time driving. I think Sam is going to drive back with the van, then drive his volvo back to our house, then we'll all drive together back to Manhattan.

I'm considering just putting the girls into the car now and driving there, because I don't have anything else better to do. And the last two nights, I've stayed up past midnight anyway. But then we have to figure out somewhere to stay. Anyone have any extra hotel points they can spare?

Tuesday, January 13, 2009

The Fork in the Road

Well, Sam and I now have a better idea why we are not moving this spring. We are in the Lord's hands everyday. Even though our plan has encompassed to preparing the house to sell and move West, we were not surprised or sad. (Even though I pine for a warmer climate in both people and weather.) But we can last another 18 months here. Especially since two days after learning the news that the Coast Guard had more applicants than job openings, we learned that Norm, Sam's dad, has a brain tumor.

We don't have much information as of late. But he's lost much function and feeling in his left side, especially his arm and leg, and a CAT Scan and MRI show a mass in the brain applying pressure to its motor portions. We are hopeful that they can find a competent neurosurgeon to help excise the mostly benign mass as soon as possible. Fishing season is only a few months away, you know! He has a lot to look forward to and his personal perspective is positive. He doesn't feel this loss of movement is a loss of momentum. He still has his mind, his voice, and moreover, his abilty to communicate his knowledge, passion and expertise through the written and spoken word. And there are innumerable people ready to make his physical self is where he needs to be. As Esra shows us everyday, it takes effort, patience and love to entrust yourself to others. But she does as much as can whenever she can. She IS happiness. And she adores her "Pop". We're sure she'll share her wheelchair tricks with him so he can get where he needs to go while he recovers.

There is much to rejoice in and I think having a spirit of gratitude brings optimism and comfort as we pursue this new course with Norm. Sam is on his way now to their home on Long Island, to get things ready for his parents to arrive. Norm and Lynda were on their yearly winter vacation, visiting loved ones all over the world. They had just visited Alaska and had stopped in California for a time before continuing on to Japan. Thankfully, the symptoms occurred stateside and they suspended the remainder of their trip and are coming home today. They arrive tonight and Sam will be at the airport in NYC to pick them up. He will spend the rest of the week there making necessary preparations and assisting Norm in whatever way. Plus, he has his first consult on Thursday with a neurosurgeon in NYC and a second opinion at Yale with one of Esra's neurosurgeons. Sam will help as much as he can especially in helping Norm complete his "to-do" list. It is long and full of love for the things that bring him happiness: family, sharing the gospel and fisheries (in no particular order, of course).

We suggested to Norm that creating a web-presence through this journey may be beneficial for him and all who benefit from knowing him. Using the web may give him an elevated platform to share his ideas, projects, personal recollections and testimony of what he holds the most dear. There is much for him to do and well-positioned blog or website may help them also answer questions about his health status, progress, and outlook for the future. He has a great tool at his disposal and a willing team of children waiting to dispense assistance in broadcasting his net to share, lift, educate and comfort. They too want a way to provide care, comfort and show commitment to their parents by supporting them in any way they can.

We look forward with hope. Surely, fresh courage. But wherever we go, we know God lift's us and guides us.

Wednesday, January 7, 2009

All Things Bright and Beautiful

The beautifying continues in the playroom today. I painted this hymn saying on an artist canvas. Its a little more "fruit crate"-ish than I had planned, but it will do for my purpose of staging. Whether my house will remained staged like this for 18 months is a question to be asked another day.

I also took a map of the world and of the U.S.A., cropped them creatively and fixed those crops to canvas for some real quickie art. I think the room now has just the right touch of color and art without overdoing it.



Once the decorating was all done, we sat (or reclined) and enjoyed the brightness and beauty of our little house and family.

Tuesday, January 6, 2009

My Word


As many of you know, my previous blog, Fresh Courage, lies dormant in a peaceful winter hibernation. (It will reawaken!) But my thoughts on courage and refreshing my own personal supply is a daily work. This is especially poignant as I feel like there is more to my life now that I am emerging from the darkness of postpartum depression. Courage was my watch word last year, my every breath, remembering my purpose for being me. Now, as I think on my word for this year, I wanted to go beyond courage. I feel clearer, there is more light around me, and I want beautify this world through love, art and service. As I think on this new direction, other words that have come to me: compassion, creativity, clarity, Christian. As all of these attributes require great vision both figuratively and literally, and I feel up to the challenge to lift my lantern to the darkness and step out into the unknown of living and loving. I decided that my word for this year will be SEE.

Monday, January 5, 2009

Life is a Stage


I am in the throws of staging our little cottage in New England, as we are hoping to move soon. As I am trying to be more of an optimist this year, I am not going to be thrown off by this morning's news that we probably will not be moving this Spring. 2010 is STILL right around the corner. And we WILL be moving then. (Well, 2009 surprised me, so I'm not going to get lazy thinking this year is going to last any longer than any other year.) There is still a lot to do. And I've done a lot already.

I just finished the dining room with new valances, cell blinds, wall bling, and a little rearranging and decluttering. I'm in the midst of consolidating the girls' room with the playroom, plus creating some colorful map art coordinated with the word "All Things Bright and Beautiful/All Creatures Great and Small". (I know, I love the hymns!) I've also started putting new vinyl down in the bathroom, because the old stuff had to go...I'll post pictures soon.

We'll have to reassess my frenzied pace to stage this place. But in the meantime, here's to making the most of what you've got. Bloom where you are planted! (Speaking of planting, I am so ready to start planning my garden...a field of sunflowers, raised beds full of tomatoes, herbs galore, onions and leeks, garlic, bok choy and spinach and I would love to have some chickens and a goat. I wish we were moving to California this year! But maybe it'll have to happen here next to our little cottage.)