Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
I am not.
I should be leaving for Fort Lauderdale today to catch the Caribbean cruise that sails on Saturday. For a multitude of reasons (that everyone is telling me are really just excuses), I decided not to go.
This is one decision that I think I screwed up. I should have gone, but it’s too late now.
I am so bummed . . . and mad at myself.
C’est la vie.
I was sitting at my desk yesterday afternoon when an email pops up on my BlackBerry from Eric's teacher. I was almost afraid to open it, thinking that whatever it's about, it can't be good news.
The email:
Hello,
Eric said "can you ask my parents in an email if I can eat with Garrett tonight? Here is his house #xxx-xxxx. and Ms. K, Garrett said it has to be today."
:-)
mk
My response:
"you can let Eric know that tonight won't work because his mom has a hair appointment and won't be home until late."
So, my kid now has his teacher acting as his personal assistant setting up his play dates on the side!
I'm so in trouble here.
Jack's story is now up on the Cure CMD website. Although, there's probably not much in his story that most of you haven't already read somewhere along the way. It is a pretty cool website though (if you happen to have a kid with congenital muscular dystrophy).
On a completely different note ... as if I don't already spend enough time on the computer - I've now been sucked into Facebook. Mary made it very clear to me that I'm addicted and spend more time on Facebook than she does.
I need therapy.
Back in early December I heard that the Broadway production of the Lion King was coming to town. I thought . . . what a great opportunity to do something fun together as a family. It seemed like something everyone would enjoy. So Santa brought us tickets to the Lion King. Everyone was very excited and today was the day to see the show and spend some quality family time together.
We managed to arrive early, find front row parking and we were graciously escorted to our awesome seats -- Row 2. The view was incredible and we could practically touch the cast members we were so close. The lights go down, the show starts ... and the crying begins! Yes, Jack cried through the ENTIRE show. As you know, when you cry, you produce snot. When you have a kid who doesn't swallow and a kid who is crying .... oh, and a kid with a tube in his neck that snot likes to accumulate in . . . well you can just imagine what I spent most the show doing.
Yes, it was such a pleasant experience (not).
I tried. I really, really tried. I really wanted to believe that tonight was going to be a great night, enjoyed by all. Some quality family time!
Well, at least everyone else enjoyed the show.
Next time, Jack stays home. He'll be much happier and I might actually get to enjoy the evening out.
I would like to make a special request of the parents of medically fragile children who read this blog. The website for The Willow Tree Foundation will be getting a face lift and a new look soon. On the current website there is a tab for "Stories", where several parents (including myself) have shared "a day in the life". I want to expand this section and add more "day in the life" stories. Just this week, I received a message from someone who can help get monies from a major corporation into the hands of the Foundation, saying that she was "deeply moved" by the stories on the website. Our lives - our stories, do touch people and do make a difference. I have big plans for the Foundation, but big plans require big money.
To my sorority sisters - if you find a few free minutes (okay, so you'll probably need more than a few minutes) in your otherwise full day, I will be forever grateful if you would take the time to write about a day in your life -- from whatever perspective you choose and however you want to share it. You can email* it to me as a Word document.
Also, anyone with grant writing experience willing to help me, please email me as well.
*schrooten1@cox.net
Thanks much!
The physical acts we perform for our children easily become tiresome chores. There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child’s need. We turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person’s mouth; of sitting by a child’s side in the dark, singing, so that he can sleep. We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong. Our tasks are our opportunities.
(From Changed by A Child by Barbara Gill)
My niece emailed me some pictures from their visit to the Zoo last week. First, you have to know that Eric is hyper-sensitive to all smells. These pictures were taken while they were in the petting zoo section of the Zoo. I don't know if you all will find this as funny as I did, but I was laughing so hard when I saw these pictures!
Today was one of those "why we live here" days. The weather was Fabulous. There was no question that I had to put Jack in his chair and head out for a walk. He was so happy to get out of the house and I was happy to get in an hour walk. We stopped along the way for some pictures.
Just a quick update to let everyone know that Mary is doing better. She still hasn't passed any kidney stones, but at least the puking has stopped. She needs to drink more water and I've having to stay on her about that.
Another bit of interesting news, I received an email from Jack's neurologist on Friday letting me know that the first two genes they tested to sort out Jack both came back normal. The plan now is to test two other genes. It was also the first time I've heard the name for the specific type of congenital muscular dystrophy Jack has -- it's called "Dystroglycanopathy congenital muscular dystrophy" and apparently within the Dystroglycanopathy family, there is a wide variation in how a person is affected. I gave up a long time ago caring if we ever found the exact type (genetically) of muscular dystrophy Jack has. The first couple years of Jack's life, I researched everything I could get my hands on trying to find an answer for Jack that I could live with. Once I accepted that Jack did in fact have some form of muscular dystrophy (denial no longer being an option given Jack's physical limitations and ventilator dependency), as far as I was concerned finding an answer no longer mattered because there is no cure. However, Jack's neurologist gave me the link to a new website called Cure CMD and, while I don't imagine a cure for Jack during his lifetime, it is encouraging to see that there is a real interest in finding a cure for congenital muscular dystrophies.
I'll leave you with a picture from Eric's visit to the Zoo last week.
That started off with me finding Mary curled up asleep on the bathroom floor. Apparently she'd spent the entire night throwing up. Oh and, by the way mom . . . there is blood in my urine. Well, I guess that warrants a call to the pediatrician's office. It takes a lot for me to take my kids into the doctor and, for the most part I take a "this too shall pass, so suck it up" attitude. But, blood in the urine - that caught my attention. I first had to run Hilary to the audiologist where they ran some tests on her cochlear implant. The information from the tests was recorded and will be forwarded to Cochlear Corporation's engineers for interpretation. We won't know anything for a few weeks.
Next stop, pediatrician's office. The doctor suspected appendicitis, so off to the ER we went. Six hours and a CT scan later, we received the official diagnosis ---- kidney stones! I didn't even know that kids could get kidney stones. The stones are small enough to pass on their own, so Mary is loaded up with pain meds and she is supposed to be drinking lots of fluids. Problem is, she is still puking non-stop. She needs the fluids to help "flush" out the stones, but she can't keep anything down. Not a good thing and I have this real fear that we will end up back in the ER for dehydration.
And, because both Mary and Hilary missed school today, I decided to let Eric skip school and go to the Zoo with his cousin Bridget and her boyfriend Joe. What the heck, life is too short. What's one missed day of school when you have the opportunity to spend time with family (and visit the Insectatarium) right?
As for Jack . . . he is doing fabulous!
That's my day in a nutshell. Hope your day was a bit calmer.
Phoenix just completed the construction of its first light rail system, so we decided to take it for a ride this evening. I know for my East Coast friends, the train is no big deal, but we Phoenicians are easily entertained! A little photojournalism follows, mostly for my family -- but hopefully you all will enjoy the pictures as well.
I'm not feeling too inspired to write these days. I always approach the Christmas season proclaiming "I love Christmas". But the fact is, the Christmases I love are memories of Christmases past. They are the Christmases of my childhood and those with my girls when they were little . . . before Jack was born. Growing up with five siblings - Christmas was always so much fun. From picking out and decorating the tree, to the anticipation of Christmas Eve, to the chaos of Christmas morning. Nothing but good memories. Now, as I wrap the gifts, fill the stockings and sit back and watch Christmas morning unfold, it's just not the same because one of my children is still asleep, he doesn't have a clue what Christmas is about, he doesn't ask for toys, he doesn't play with toys, and he just doesn't get it. The fun of Christmas morning is tempered by the morning routine that I've come to dread after ten years - the breathing treatment, the Vest, suctioning, tube feeding, and more suctioning. Loading up the car to drive across town to my sister's house is not as simple as the kids all jumping in the car. It's just a whole lot of work and by the time I get to my sister's I'm exhausted and . . . bitter. I just feel so sad for Jack and I suppose, for me too.
As my brother so accurately pointed out last night when we talked . . . I'm having myself a pity party. I just want the whole "happy" holiday season to get over with. I'm much happier in the routine of every day life where it's easier to pretend my life is just like everyone else.
Putting aside my pity party for a minute, I received wonderful Christmas cards/pictures from so many of you and I am so grateful to be considered your friend. Thank you all. I also received several very generous donations to The Willow Tree Foundation. I am honored and more committed than ever to reach out to more families of medically fragile children this coming year. Stay tuned for more on that.
Thanks for checking in. Thanks for caring.
On this Christmas Eve, I share with you Il Divo singing “When A Child Is Born”. I am moved to tears every time I hear this song. The words talk to my heart and have so much meaning, not only as they apply to the birth of Jesus, but to the birth of all of our children. The hope, silent wishes and winds of change each and every one of our children brings to our lives. Powerful stuff. And the emotions are even more intense when I think of Jack and all the children who face the incredible challenges life has bestowed upon them with such joy and grace. For it is only because of hope and silent wishes that I am able to survive the winds of change Jack has brought to my life.
May you all have a blessed Christmas filled with the Hope of good things to come in the New Year.
Thank you all for taking the time to vote for the "best" cookie. The kids (and my very competitive sister) really enjoyed it. The winner is #2 - Santa created by my niece Kelsey. The grand prize is the right to Gloat at our next family gathering on Christmas Day. Congrats Kelsey!
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As for Jack's first day with the new nurse ... he pretty much cried the entire day. *Sigh*. He doesn't like change any more than his mother.
Tomorrow our new nurse starts. Let me just get the whining out of the way ... "I HATE THIS!"
I hate leaving Jack in the hands of someone I do not know. I've not met the new nurse yet. I was supposed to meet her last Monday when she was scheduled to work a half-day, but she called and said she couldn't work (not a good start). I have to rely on Kristi's assessment of her (who's opinion I trust implicitly) and, according to Kristi, this person is knowledgeable and comfortable with trach/vent kids. However, equally as important as finding someone who has the skills to care for Jack, is finding someone who will treat Jack as a person, not simply as a job. Kristi told me that the new nurse commented as Kristi was doing Jack's morning routine, that Jack is very lucky because she can see how much Kristi truly cares for Jack. She said she's seen many nurses who don't begin to treat their patients as well as Kristi treats Jack. Kristi shared this with me, not to toot her own horn, but to point out that this new nurse clearly knows the difference between good care and bad care. It gives me some comfort to know that this new nurse recognizes the difference. It is so important to find a nurse who will be gentle with Jack, who will listen - and respond - to what he is "telling" them, and who will respect Jack as a human being. It sounds like that would be a given, but sadly ... that's not always the case with a non-verbal, immobile, 100% dependent patient, especially when the patient is not a cute little baby anymore (and that's a whole other blog topic for another day).
In any event, the only reason I'm even okay with this new nurse coming on board is because Mark is off on Mondays, so he will be home to keep an eye on things. Based on Kristi's observations, I'm cautiously optimistic that the new nurse will be good with Jack and everything will be okay.
Wish us luck!
This evening the cousins (and Aunts and Uncles) got together for our annual cookie decorating party. I wasn't sure it was going to happen because my niece's flight from New Jersey was delayed several hours. However, we managed to pull it off and I must say that this year it was quite the competitive group - each trying to "out-decorate" the other. It's been requested that I ask my blog followers to vote for this year's "best" cookie. Everyone is taking this contest very seriously, so it would be great if you all would humor us and leave a comment picking your favorite cookie (by number). All my silent readers ... please weigh in (you can remain anonymous).
Thanks!!
Thank you for riding along with us on our journey.
