Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Operation: “Make Merry”

on December 10, 2012

mom

My mother, Dolores (Joscelyn’s grandmother) passed away last week. She suffered a massive stroke on Monday and by Wednesday, she was gone. I learned of her stroke while Joss and I were in the hospital, awaiting the results of several days of testing to determine the cause of some very concerning seizure-like activity which she continues to suffer from, despite undergoing a hemispherectomy in July.

In addition, we are still mourning the loss of Joscelyn’s older brother Nick, who died 13 months ago in an accident over Thanksgiving weekend.

Sickness, grief and death have plagued our home for over a year now and while I recognize the benefit of fully acknowledging and taking the time to process one’s grief, quite frankly, I must say that at the moment I’m tired of grieving.

I’m reminded of the words of poet Mary Oliver:

Starlings in Winter
 
Chunky and noisy,
but with stars in their black feathers,
they spring from the telephone wire
and instantly
 they are acrobats
in the freezing wind.
And now, in the theater of air,
they swing over buildings,
 dipping and rising;
they float like one stippled star
that opens,
becomes for a moment fragmented,
 then closes again;
and you watch
and you try
but you simply can’t imagine
 how they do it
with no articulated instruction, no pause,
only the silent confirmation
that they are this notable thing,
 this wheel of many parts, that can rise and spin
over and over again,
full of gorgeous life.
 Ah, world, what lessons you prepare for us,
even in the leafless winter,
even in the ashy city.
I am thinking now
of grief, and of getting past it;
 I feel my boots
trying to leave the ground,
I feel my heart
pumping hard.  I want
 to think again of dangerous and noble things.
I want to be light and frolicsome.
I want to be improbably beautiful and afraid of nothing,
as though I had wings.
 
~ Mary Oliver ~
It’s been too long since I’ve felt that way: “light and frolicsome…as though I had wings”.

I wrote some time ago of the terrible habit we humans have of postponing our happiness; “When “x” or “y” happens, THEN we’ll finally be happy.”, we promise ourselves.
I can’t live like that anymore.
If I wait until conditions are perfect before I allow myself to be happy, I literally might never smile again.
Joscelyn had nearly half of her brain removed in July in an effort to put an end to debilitating seizures which threatened to cut her life short.
We are nearly 6 months post-surgery, the time at which we were hoping to declare her seizure-free, take her off of her medication and get on with the business of watching her grow and develop. Instead, we have every reason to believe that she is still seizing. The possible reasons why this could be happening and treatment options available for her quite honestly range from bad to worse:
1) The seizures could be due to a missed piece of brain tissue on what remains of the “bad” side of her brain that is still connected to her right side and is transmitting seizure messages to the right hemisphere. Correcting this would require another brain surgery, most likely followed by a second surgery in which a shunt would be installed. (This is actually the best case scenario at this point.)
2) The seizures could be originating from what we thought was the “healthy” right side of her brain. In many cases, hemimegalencephaly only affects one hemisphere of the brain but in some cases, both sides of the brain can be malformed. (In these cases, HME affects typically 25%-30% of the second hemisphere but there are cases of “total hemimegalencephaly” in which the entire brain is affected.) When Joscelyn first had an MRI done in May, her right hemisphere didn’t appear to have any abnormalities but now that her brain has had time to develop more fully, her latest MRI now shows some that she may have some degree of cortical dysplasia on her right hemisphere as well. (Her white and gray matter are not as distinct in some places as her doctor thinks they should be.) Since we’re relying entirely on her right hemisphere to compensate for the loss of function from her disconnected bad left hemisphere (Which had to be removed or she would have had absolutely no hope of seizure control) this news is potentially devastating. We now have no idea to what degree her right hemisphere will be able to take over language or any other cognitive or motor skills. Since a person can only afford to lose so much brain matter and still function, further surgery isn’t an option in this case, so we would be forced to aggressively treat any right-sided seizure activity with a combination of diet and heavy amounts of anticonvulsant drugs, all of which can cause cognitive impairment over time and none of which are guaranteed to work.
3) The third option is that pressure from excess cerebrospinal fluid is building up in her ventricles and triggering seizure activity. If there is a missed connection on the left, the shunt alone will likely not be enough to stop the seizures. Another resection would likely be necessary to remove the piece of bad tissue first. If pressure issues are aggravating the right side and triggering seizure activity, the shunt will help but she will still need to stay on medication, most likely for the rest of her life.
Right now, she is not seizing. The medication she is on is working and her seizures have stopped. We are in what the doctors refer to as a “honeymoon period” in which the drugs are working. They predict that this period will end in another few weeks or months. If we don’t, or can’t, stop the seizures, we will literally be forced to stand by and watch as our daughter plateaus in her development and then slowly loses the abilities she has gained thus far. Her right hemisphere is already showing some signs of atrophy from the seizure activity.
Everything, including her life, is still at stake.
Her test results and imaging have been sent off to several hemimegalencephaly/hemispherectomy experts around the country in an attempt to get a second (and third) opinion as to what our next steps should be but we likely won’t know anything for a few more weeks. We may be looking at having to travel out of state for treatment.
In the meantime, we have four other children who would like very much to have a normal childhood and enjoy the Christmas season.
So for their sake, and for the sake of my own sanity, I have initiated “Operation: Make Merry”.
It goes without saying that I don’t FEEL like being merry. While mentally I acknowledge that I still have a great deal to be thankful for, my heart is absolutely broken and I am filled with fear for my daughter’s future.
But there’s nothing I can do about that for the next few weeks, so until then, I’m determined to experience as much happiness and joy as life will allow.
As you might remember from history class, what you wear on your feet is critical when going into battle. Wars have been won and lost because of footwear. Today, I’m wearing these:
reindeer
I might be sad… but at least my feet are happy!
The FOB (First Order of Business) on “Operation: Make Merry” was to take Joss to see Santa this week. When we arrived at “Santa’s Workshop” at the mall, their photo printer was broken. While standing around waiting for it to be fixed, Santa called us over to chat. Joss’ Grammy told Santa all about her condition and Santa amazed me by stopping everything to pray for her! How often does that happen?! She wasn’t sure what to think of St. Nick at first but she warmed up after a few minutes.
suspiciousjoss
josssanta
jenjosssanta
We also attended a performance of The Singing Christmas Trees at First Baptist Church of Orlando. This amazing production features two forty-foot Christmas trees and a full orchestra. If you look closely at the trees, you’ll notice that the “ornaments” are actually members of the choir! My sweet friend Debbie attended the concert with us.
debjoss
josstree
treesgreen
In the coming weeks, “Operation: Make Merry” will continue with us celebrating Christmas at home and enjoying our traditional Christmas brunch, followed by caroling and helping to deliver gifts and homemade cookies with the wonderful people at Nathaniel’s Hope to the children staying at Florida Hospital for Children.
I’ve found that often times, the best way to “make merry” when you don’t really feel it is to do something nice for someone else.
Joscelyn’s future may be somewhat uncertain right now but we are not without hope. In the last few weeks, she has mastered “combat crawling” and is now taking great delight in exploring and getting into everything she can get her hands on. Like her mother and her grandmother Dolores before her, she is a fighter!
Mischief Incident #1:
https://www.facebook.com/photo.php?v=4974401407795
Mischief Incident #2:
https://www.facebook.com/photo.php?v=4982230483517&set=vb.1532125872&type=3&permPage=1

To be completely honest, right now, life looks rather sad and bleak.

 

But in the immortal words of one of my mother’s favorite singers, Judy Garland,
“Have yourself a merry little Christmas, make the yuletide gay. Next year all our troubles will be far away.”
Oh, how we are clinging to that hope!
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18 responses to “Operation: “Make Merry”

  1. giazzpet says:

    Oh sweetie, you have been through so much and yet you show others how to keep strong. You are in my wishes when I do Hanukkah tonight and I wish you strength during this Holiday season. Hugs from me

  2. Mariellen Barr in PA says:

    I’m so sorry for the loss of your mother. And I am weeping for the information about Joss’s condition. The poem you posted is exquisite. I pray, that as you wage in the battle before you, Christ’s light would penetrate every shadow of sadness and fear you have. That the knowledge of his coming to earth as a baby, to knowingly endure the beatings, the pain, the cross; would give you courage. He is with you. He knows Joss and what she is facing. You are not alone!
    Love from PA to your dear family.

  3. Patty Cleavenger says:

    I cannot even imagine the pain and devastation you are now situated in. I offer my heartfelt prayers to lift you and your family and especially Joss up to God’s tender mercies. You have been refined to pure gold now and I pray He will give you rest and peace. Blessings to you.

  4. Kimette Beere says:

    Blessings to you all and may the joy of this season of grace fill your heart and soul with peace.

  5. Patricia Brandt says:

    I have been following your story from the beginning as my daughter in Alaska posts it to Facebook. I am so sorry that you are going through all of these unbelievably difficult times and I pray for you and your family to have relief from these heavy burdens. I so admire the hope that you continue to hold on to. Joss is blessed to have a mother like you.

  6. It’s great to see pics of Joss enjoying herself! May you all live in the present.

  7. Wow – you’ve been through so much already, yet you always seem to find light at the end of the tunnel. Your faith, strength & determination are inspiration to all of us! We’ll continue the prayers of strength & healing for Joss. Will also pray for comfort & peace to you & your family during this season of grief. Please know that you are not alone!

  8. Andrea M. says:

    I honestly don’t know how one woman could endure so much in one year! But just like Job, you stand firm in your faith and say, “Though He slay me, yet will I praise Him.” I admire you, your strength (and reliance upon the Lord your Strength), your attitude, your choice to be merry despite the curve balls that just keep on coming. Much love to you, my friend!

  9. scrappygrams says:

    I have been praying daily for Joscelyn since the summer. Her glowing face reflects God’s love for her. I will add your mother for souls that I also pray for. I hope for “a merry little Christmas” of which Judy sang.

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