Saturday, March 30, 2013

Happy Easter.

We believe this holiday to be so much more than just pretty eggs, a bunny and candy. But, we enjoy the traditions of coloring Easter eggs together, hiding and hunting them through the yard and Easter baskets of little surprises on Sunday morning.



From our family to your's, Happy Easter!











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Tuesday, March 26, 2013

One memory at a time.

Wyatt currently lays sleeping in his electrically adjustable hospital bed with its continuous air circulating mattress that sounds faintly like popcorn popping as the air moves within the different pockets underneath him. He's just across the room from me. The bed screams "medical equipment," which bothers me some days, but it does what we need it to do. And for that I'm happy.

I've organized medical supplies recently, as I so often do, and it hit me just how loaded our home is with medical equipment. I don't even see it most days. Every piece has a purpose and place in our life. It all came into our home one piece at a time during an illness or health decline. It was added as we needed it. The scary realization for me is it will not go away one piece at a time as it came, but all at once. A brutal blow to a family that is so used to their home being this way for so long. I've been thinking about this more frequently lately and then I stop myself as the sadness begins to creep into my heart as my mind begins to think about the reason why this will happen.

Wyatt was struggling greatly a couple weeks ago. That description would probably be considered downplaying it even. Not able to wake, so weak he was unable to move, let alone push the button for an extra dose of Fentanyl when he felt pain. He had us concerned, to say the least. But he has now been waking more again. I love to see those eyes as he wakes each day. He's not awake all day every day or for very extended periods for that matter. But we wouldn't expect that. I will take 2, 3, 4, 5 or 6hrs happily if we are so blessed to get them. His strength has been improving. He's scooch-ing (is that a word?) more and more in his bed, rolling himself onto his side again, finding and pushing his button, and we've been working on sitting on the floor and leaning up against his bed. The last is not always a favorite. But as I told him- his job is to complain excessively and my job is to help him do it anyway! After he's finished if you ask him if it felt good to sit up he reluctantly will say "yes", as if it pains him to even admit. And every once in awhile he will even say "you were right". It's quite an age appropriate interaction and said in such a manor...we love every second of it. He's been more reliant on his bipap since the decline. Which is ok, since he often prefers the bipap when his respiratory system is feeling weak. It's one of those quirks of our boy, he has always greatly benefited from the support of ventilation. It's not something we insist he wear or refuse to "remove". He verbalizes his need for it and asks to wear it, as he can feel how it helps and assists him. Excessive edema is a continual struggle and we have found no amount of extra lasix will slow it from accumulating. But lasix does help pull off some fluid that would otherwise just make matters worse. Some is better than none. As you can often see in the pictures that I share, the edema is very prominent. His body is a delicate balance and very sensitive to any change, no matter how small- whether that change is from something we do or in the way his body is functioning (or not) that week, day or hour. His blood work reflects just that, as his lab values are rarely consistent. But with SuperWy, anything goes. He's been defying the odds and breaking the {medical} rules since 2002.

We've been talking a lot about what we'd like to do as a family this spring. We recently took a quick road trip to Washington DC to visit a couple museums and see the sights. It was fun and nice to get away even for just a weekend! Wyatt's memory recall is very little these days. He can rarely wake and remember anything from the days before. But he enjoys when we tell him about things, showing him pictures or videos and likes the little souvenirs from places we visit. And, in the moment, he enjoys the excitement and adventure of seeing new places and/or doing things. There are times he doesn't have to say a word, you can see it in his eyes! We hope to try to fit in another little road trip or two this spring- anyone up for a quick trip to Niagra Falls? Along with flying kites, possibly visiting the beach, watching a baseball game or two, playing in the backyard and setting up Wyatt's small fish pond.

OK, perhaps our list is a little ambitious. One day- or should I say, one memory at a time.
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Thursday, March 21, 2013

He lives to live.

As a baby bird, she sits snugly deep inside a nest. The closely woven, intertwined branches create a safe wall circling around her. The bird's feathers will begin to fluff and grow. Bravely, she will eventually hop over the small twiggy wall of the nest to venture out onto a branch. Perhaps the sun warms those newly acquired feathers and she experiences a gentle breeze as it rocks her timid wobbling body back and forth.


As the bird spends more time outside the nest, watching as others float and soar through the air, it's not long before it's her time. Quivering on a shaky branch, I imagine the bird closes her eyes and just leaps. Wings flapping wildly, uncoordinated and frantic. Just barely staying afloat as she makes frenzied motions through the air. As her stability is shaken and you think she's just about to fall- it happens. Her wings begin to move in a purposeful motion. Now looking strong and graceful, gliding through the air- she feels the rhythm and finds balance, the peace.


The bird learns to fly- to soar through the clouds. And she will never be the same again.


While adapting and learning to live in this way, a stray storm will sweep through from time to time, throwing off her rhythm. Leaving the bird flapping her wings wildly in fear of falling. But she will find stability once again, even in the midst of fierce wind and pouring rain.


I can relate to this. Can you? I think this analogy could be used to describe so many different circumstances in life. Have you been working through your own storms? Have you learned to fly? To really soar?


Wyatt's fight for his life could easily be described in such a way. As well as our life parenting a child with a terminal disease. I wonder though- as the Mito is taking over is our son falling, as you may initially interpret the analogy, or will he really be just beginning to soar?


There has been so many times that I've felt much like that bird, flapping frantically, trying so hard not to fall. Focusing on trying not to fall. So scared to fall. But then, in those moments, I learned to relax and just 'fly'. There are storms- big, scary storms in our life- that leave me frantically trying to stay afloat and so close to falling. But I do eventually find the balance, the rhythm, the peace.


It's no secret, we are not a typical "hospice family" and don't quite fit into that way or lifestyle fully. We drive the team a little crazy with our unorthodox end of life ways. But I accept that, as we are following not only our heart, but more importantly our son's.


After speaking of the intricate and delicate balance that Wyatt's body requires at all times, I was asked by a hospice team member, "With all this (as he motioned to Wyatt's attachments and elaborate set up), what do you think keeps him going?" I wasn't sure what type of answer he was expecting at first, but I continued to think about that question for hours later. Wyatt is filled with such a huge amount of acceptance, understanding, tolerance and a spirit that exudes love so genuinely. Even through all that he has experienced, he looks forward to each day through innocent eyes. I think he lives to love. And he loves to truly live.


He lives to live. And it's my goal to do everything in my power to help him to continue to live even as he's dying. For the moments between the storms are the moments to fight for.


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Sunday, March 10, 2013

Spring weather is welcome.

This week has been tough. Wyatt was increasingly lethargic and there were days that he woke for only an hour cumulatively, if at all. I'm using the word "woke" very loosely here. He's very weak, relying fully on the bi-pap and not able to tolerate any time off of it. Most simply stated, things are not good at the moment.


Today the weather was such a beautiful change to the windy, cold temperatures of winter. It felt like spring! As we were changing Wyatt's clothes early this evening I was able to rouse him enough to ask if he'd want to go outside with the girls. After a little coaxing he said "yes".


I love his determination. And spirit. This boy has a way of rising to the occasion.


Wyatt felt the sun on his face, turned the speed up on his wheelchair and sped through the yard. We have possibly the bumpiest yard in the country, which makes it quite an adventure trying to maneuver his quickly moving wheelchair across it. He enjoyed hearing the girls scream loudly and laugh as we turned the speed up on his wheelchair while pulling them behind on their roller skates.


We didn't spend long outside. But the time we did, we took advantage of.


These pictures make my heart so happy. I love watching them play together- seeing their smiles and hearing them laugh. So much so, I felt I just had to share. I hope you enjoyed seeing them too!


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Tuesday, March 5, 2013

The Father- Daughter dance.

Friday evening was the much anticipated Father-Daughter dance. The girls were waiting for March 1st for weeks! We shopped for their dresses, shoes and accessories to match. Maggie had thought ahead and asked Grandpa to be her date, so she and Jilly would both have someone to slow dance with.


 Maggie was specific in how she wished to look for the dance this year. She found the perfect dress, accessories and had envisioned 'the look' weeks in advance.


This was Jilliana's first Father-Daughter dance and she couldn't have been more excited about it! She was less particular in what she would wear, anything "fancy" and "pretty" would do. We began doing hair and getting ready early, but somehow they were still left rushing out the door. Such is life as a girl! I snapped a bunch of pictures and asked Jilly to smile big. Oops!


When I smiled and tilted my camera to the side of my face to give her a knowing look, she innocently looked back at me and said "You said to smile big." She was right, I certainly did. I apologized and asked her to smile "not so big" this time.


Corsages slid on their wrists and they were ready to dance!


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Friday, March 1, 2013

It takes a village.

From the many doctors who have assisted us along the way, to the many nurses who carry out all the orders and keep us company, social workers who become listeners and have worked their magic time and time again, multiple pharmacists who are always working to keep the supply of medication and necessary medical needs in our home, the couriers that make numerous trips to our home each week at all hours to ensure our boy gets what he needs, to the lab techs who know us by name. Family who has taken care of what needs to be done when we need it, teachers who take extra care to ensure our girls are OK, to the flow of cards that come in the mail and home from school with well wishing messages. Friends who are there to help in any way they can, with supportive words, countless prayers, visits to cheer us up and/or texts late in the night that make me smile or laugh. Individuals who spend their time making phone calls and emails for tickets to an event that Wyatt wishes to see. Or the one who takes time painting our son's favorite things on a pair of special shoes. Or the person who crafts a warm blanket to wrap our boy with comfort and love.


I would certainly say the proverb is true- it takes a village to raise a child. And to keep a family going, when things get especially tough.

We have been blessed with an extended village that has surrounded us. The love and kindness runs deep. This village has made it possible to do what we do- to be a family, to care for our son {even at home}. To feel loved and reminded we are not alone, when it's difficult not to feel this way.

Thank you (yes you!) for being a part of our village. We truly, thank you! We couldn't do it all with out you. Thank you for supporting our family in whatever way you may.


Another Quick Update:
This week Wyatt had a couple better days initially and then shifted into the not so good territory. He began waking more in the beginning of the week and we thought he had turned the corner of this current infection. But by mid week things began to shift back. He's again very sleepy, waking for only a few hours a day total. We decided to do another urine culture after seeing multiple changes in him (increasing edema, acting febrile, increasingly lethargic, increase of pain) and his urine. And sure enough he's now growing yeast in his bladder too. An anti-fungal has been again added to the schedule, along with the antibiotics he's already on. Hopefully, now that we've got him covered for nearly every type of bacteria, he'll begin to improve a bit more.

{He did wake this evening as we got Maggie and Jilly ready for the Father-Daughter Dance.}
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