All posts by seizinghope

One divorced Moms journey parenting a child with epilepsy and activism.

The Dust Settles…

A tornado of letters and words and feelings have been in my mind for months now; too chaotic to process the whirlwind of our recent experiences. Thoughts, emotions swirl like a dust storm inside of me. But that dust is settling as we return to the rhythm of our life and embracing the joy in each day.

In September I sat in the office of a neurosurgeon, one I trusted and respected, the same woman that had placed Haley’s VNS implant years ago. Somehow I felt that hers were the only hands that should be trusted with what we were considering.

Years ago, after several “clean” MRI’s but our epileptologist’s insistence that Haley’s EEG looked dysplastic, we opted for yet another MRI as her brain matured, and we found it. A focal cortical dysplasia in Haley’s left parietal lobe. fMRI and MEG scan showed multiple seizure focal points throughout her left hemisphere though, and we were reluctant to endure surgery when the best possible outcome was likely slightly fewer seizures.

In the past several years however Haley’s decline, both in cognition and quality of life, was rapid and significant. It was time to revisit that option, re weigh the potential outcome, look at new technology and re decide armed with more knowledge.

In preparation last February Haley spent a week inpatient gathering new Video EEG data and undergoing new imaging. Later she also had a new PET scan. The consensus was that the dysplasia seemed the most likely culprit.

I hoped for laser ablation. Minimally invasive in terms of incision and recovery. In that meeting I was informed succinctly that it was not a viable option. The size and shape of her abnormality did not lend well to the technique and the edges of her dysplasia were not clearly defined. The VNS makes higher resolution imaging inaccessible. A traditional craniotomy and resection was offered and suggested.

The question became whether to do a 1 part resective surgery and just remove the dysplasia under the assumption that seizures would resolve if the physical deformity was removed, but the danger was that it was very close to the language epicenter of her brain and we risked a significant loss of language skills. Or a 2 part surgery to place internal grids and strips, monitor the seizure activity for 5-7 days, do some function mapping and then remove the offending areas.

Haley suffers from a sense of trauma with anything hospital related. Who can blame her? A significant portion of her childhood has been spent there. We opted for the single surgery to remove the dysplasia to minimize the emotional impact to her. With her cognition declining so rapidly our trusted surgeon cleared a day and we set surgery for a rushed 2 weeks later.

I prepped Haley in the best way I could. Trying to accurately explain the procedure and possibilities in language she could understand, to abate fear, to offer hope but not false promises, and to reassure her that she was perfect with and without seizures.

Surgery day came and we were all filled with hope and fear. We distracted Haley with chapstick flavors inside of her anesthesia mask to mask the harsh smell of the gas that would put my baby girl to sleep. She decorated her mask with stickers and happily played her iPad as we waited for her turn, alternately seizing and charmingly making everyone laugh as she regaled exploits of her pets to the myriad medical professionals that came in. Hope was high and the atmosphere was festive.

I suited up and accompanied her into the OR. She clutched her special Boo boo bear and I did my best to alleviate her fear, knowing it could never be abated. My baby girl laid flat on the OR bed and the anesthesia began pouring into her mask. She fought it slightly, the harsh smell and that feeling of suffocation. And she started seizing. I was told to peck her goodbye quickly and whisked away holding her bear in arms that ached to hold her.

Walking out of that room, leaving my baby girl unconscious and seizing was one of the most difficult moments of my life.

Prepping her mask for surgery #1

My sister and I waited together. Nervously pacing the hospital halls. Her coaxing me to eat. Every hour an OR nurse would call with an update. 1 call. 2 calls. 3 calls. 4 calls. 5 calls. 6 calls. 7 calls. 8 calls. 9 calls. Finally the last call- they were closing. We could meet them in the PICU waiting area in about 1-1.5 hours.

As they transferred her from the OR to the PICU, assessed and awakened her our surgeon, Dr. Duhaime, came to see us. She assured us everything had gone as planned. Dysplasia and brains do not look as we imagine, the folds are not clear in a live human brain and she relied on image guidance to remove as much of the area as they could. She warned us that it very likely impacted her language function and she worried aloud at the extent of loss and small likelihood of recovering it. Then she briskly walked to asses my girl before we would be admitted to the room.

In those minutes the NP, Jess, that works with her (who often distracted and amused HALEY with her gentle, playful tactics so we could discuss logistics) came rushing in. “She’s talking normally! She can follow multi step directions without visual cues! Her language seems FINE! Come see her!” That was a moment of celebration, relief, and reward after a harrowing day.

Haley was, as expected, in a lot of pain but good spirits. She ate the snacks provided, opened gifts and face timed friends after 11 hours of brain surgery. My girl was her fiery, fierce and funny self. But she was also seizing. And they looked the same. 1 seizure. Then 2. Then 3 within hours.

Face timing friends after a long day of brain surgery.

I had been prepared for this. Seizures post surgery, even successful surgery, are common. The trauma and agitation to the brain cannot be understated. I held onto this logically. But I was devastated.

I clung resolute though that regardless of outcome this WAS the right decision. I could not look into my baby girls suffering eyes any longer without knowing that I had done EVERYTHING possible to help her. We had hit our point of last resort.

But Haley continued to seize at exactly the same rate as pre surgery. We were so grateful to have no apparent deficits, but no one was prepared for no seizure improvement at all.

Haley was scheduled for a new MRI to see if there was a brain bleed or piece of the dysplasia that was missed. Perhaps the image guidance had been off by fractions of a centimeter and some dysplasia remained.

The MRI showed nothing. Except. The neuro-radiologist noted that close to the original dysplasia was another “fuzzy” spot. Even less clear. Even closer to language.

Those hard early days after the first unsuccessful surgery.

Dr. Duhaime stood in the hall with me. In her eyes I saw a strong, capable, brilliant surgeon. But more than that professional mask, I saw a woman. I saw a Mom. I saw genuine care and concern for my daughter. And she said to me “I think I want to get back in there before scar tissue forms. Any other surgeon would say to let her heal and see what happens. That another surgery now would be crazy”. She looked at me and said “I don’t know what to do. My desire to help Haley is clouding my judgement” and I’ve never been so moved by another’s love for my girl. We decided that Haley’s medical team would meet as a group and make a recommendation.

Our epileptologist Dr. Thibert called in while on vacation. A neuro-radiologist we never laid eyes on came on his day off. The surgical team gathered. And we decided to schedule the 2 part surgery for the following week. But let Haley come home in the meanwhile.

The next few days were rocky. Rollercoasters of emotions and seizures. Doubt and uncertainty and questioning our every decision coupled with Haley’s disappointment and pain. I felt guilty for trying to spare her the 2 part surgery only to have to now endure that. The day before the second surgery, with Haley seizing but defiant and scared and outright refusing to return to the hospital we made a game time decision to give her another week. Everyone was concerned about 3 administrations of anesthesia and 3 traumatic surgeries in such a short time.

Haley was ecstatic for a reprieve and decided that she wanted return to school in the interim. That girl is the epitome of brave and resilient.

The week passed and with grim Groundhog Day like familiarity we showed up for surgery #2. Haley was uncooperative. Fighting everything. Sassy and spirited and stubborn. It’s more difficult than listless and compliant but I’ll take that fiery spirit any day.

I again walked behind the gurney to the OR. This time she went to sleep with no complications and because it was only the placement of grids and strips the surgery only lasted 5 hours.

Dejavu set in as we did the same laps, waited in the PICU waiting room and then reunited with my now tethered girl.

She spent several days with her head swathed, wires protruding from her skull and tethered to the machine that monitored her brain from the inside out. We worked to eliminate infection risks. And struggled to entertain and cheer a physically and emotionally hurting, frustrated, traumatized girl.

All wrapped up and confined to bed for as long as it takes to gather enough info.

We created a poll asking whether ladybugs bite and it became a big debate as we tallied responses. We had the best PICU team ever with an attending physician assisting myself and a nurse with a bed change after an unfortunate bed pan mishap. That same physician painted his nails in a ladybug pattern and drew her pictures of lady bugs with teeth that looked suspiciously like termites.

Child life helped fulfill her requests for slime and crafts. Friends showed up with gifts and hugs. Days passed. We wanted data, we got data. 15-30 seizures/day of data.

Final ladybug poll results. Very controversial.

That data showed that the almost indiscernible spot on the new mri was indeed another dysplasia. We decided to do some deep brain stimulation to try to do some function mapping and see what outcome we might be up against. They stimulated one area as Haley successfully repeated simple sentences. They stimulated another probe in an active area and again Haley smoothly kept on task. They stimulated another very agitated area and I saw a look of sheer panic cross Haley’s face. Frozen. Terror. Indescribable and undeniable. She could not speak or comprehend to follow a direction. We started again. Area 1. Area 2. Area 3. Same results. We could remove the offending tissue in the first 2 active areas but touching the 3rd would unequivocally mean a complete loss of language function.

We prepped for surgery. We waited for hospital time with delays. Haley melted down. It was too much, too many asks of a young girl who just wants to live a life outside of hospital walls. The compassionate anesthesiologists came to her room and sedated her for the gurney ride to the OR this time.

So many hours later my girl emerged. Awake. Speaking. And still seizing.

I held myself together in front of her but after I settled her in to sleep and seize I sobbed. Heartbroken. Devastated. Hopeless.

We were released 24 hours after her third brain surgery in 3 weeks. The team confident in my ability to care for her at home and her resolution that she needed to go. Life was waiting.

In the days that followed we observed that her seizures seemed to have lessened in strength. And reduced by about 50%. She was averaging around 10/day but she was no longer incontinent with every one.

She returned to school less than a week later. Incision still bearing stitches and a large bald stripe testament to the healing that had just begun.

Leaving after the last surgery. Headed home.

It’s now been over 3 months since that last surgery. True to counsel Haley has continued to improve. She is now averaging around 5-7 seizures daily with only about 1/2 of those being convulsive. Her cognition is improving. There is fuzzy hair regrowth along most of her incision site. She’s even had a handful of seizure free days! We hadn’t experienced the glory of that in nearly 10 years.

*Edited 2/12 to note how quickly things change. In the span of a week Haley has lost a significant amount of the improvement that she had gained from the surgeries. Epilepsy is nothing if not unpredictable.

The dust is finally settling. The tornado of thoughts, rapid fire hard decisions and raw emotions and impact of that are no longer engulfing and all encompassing. And while the seizure storm in her brain continues at least we’ve provided an umbrella. And believe that there’s sun behind the clouds. New treatments, new options, renewed hope in the present and future. And the consistent theme that life is fragile and short and we must seize every moment and live with the knowledge that tomorrow is only a possibility, not to be taken for granted.

Live for today. Love for today. Face the storm.

Life goes on. Storms and seizures and all.

Footnote- I can’t begin to express our gratitude for our team at MGH. From Dr Duhaime who was brave enough to care for my girl, and Jess for her patience with her to the cheerful child life specialist and the PICU team. Dr Bess for the stuffed pig with the curly tail that made Haley smile on a day that nothing was coaxing cheer. To every medical professional who answered our lady bug poll and engaged with and saw a child not just a patient. To our long time epilepsy specialist Dr Thibert who has been a voice of steadfast support. To our friends, family and online epilepsy and cannabis communities who sent flowers, gifts, prayers and love.

I’m humbly, overwhelmingly, indescribably grateful. I’ve never felt more supported by a village. The outpouring of love for my strong willed, sensitive, resilient girl is appreciated immensely.

Sugar and Spice

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Icing her face after a seizure knocked her down.

We are walking through the parking lot talking proudly about our kids. He says “little boys learn how to fall” referencing his son’s propensity to spend hours tossing and diving on the ground to catch a football. I’m so floored I almost stop walking, stutter mid stroll, at the truth of this. As I listen to him talk of his exploits as a kid and of his boys, thoughts of how epilepsy has turned me into a helicopter, overprotective, on edge, scared Mom who has taught my children neither to fall or fly, but only to assess and avoid danger, invade.  

My oldest, my fearless son, often left me holding my breath, squeezing my eyes shut and offering silent prayers that he wouldn’t break anything this time.


My middle child I encouraged to climb one more branch, hop back on the bike, I believe you can do it! Put that one on a stage and they shine. 

But my youngest? My special needs child? I often said “sit down, okay”? You don’t want to hit your head again. What if you have a seizure right now? Are you making safe choices?

I lost my place of yes and replaced it with trepidation, warnings and “be careful”! I preached caution and safety. 

I’m sorry my loves. I wish I could go back and say yes more. I hear sayings like “Fortune favors the bold” and “No risk, no reward” and I physically flinch. Our whole life is a risk. It’s constant vigilance that if she goes down we can protect her head, her face, her arms that bear the impact but can’t brace for it. I don’t need to seek adrenaline rushes, I need a break from them.

But I hope, Haley, as you enter these teen years that you learn how to fall. I hope to help cushion the blow when I can, but say yes as often as possible so I can see you shine when you fly.

And more importantly I hope to teach all of my children to fly. To pick themselves up, dust themselves off after a fall, be resilient and confident and worry less about skinned knees and broken hearts. Just to worry less actually. Embrace life, risk and all, and the reward of experiences.

And in this post divorce life navigating new relationships and parenting I am again finding my place of yes. For my children, for my partner, for myself. Risk (physical AND emotional) and reward.
Because “what if you fly?” 

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I am Someone

All my life I have defined and labeled myself first and foremost as an extension of someone else…

Daughter

Sister

Friend

Wife

Mother

I have never thought of me principally as “Individual”.

And while all of those titles are of varying importance and comprehensively part of me, they are no longer my defining factor. I am me.  And that alone is enough.

Granted, I can not (nor do I want to!) separate those parts of me. This is the first time that I am acknowledging that being an individual is just as important as being a Mom and I don’t have to sacrifice one for the other. I can do both. Growth is painful and difficult but I don’t run from either of those. I meet challenges head on. Not without fear or anxiety or pain, just in spite of.

Most people live in self preservation mode. They see pain and they want to avoid it. Avoiding pain is avoiding the lessons that can be found within. So I will welcome the pain and in return I am rewarded with both the experience and the lessons.

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So…I will continue to embrace vulnerability and wear my heart on my sleeve. I will dive head first into life and all of the experiences that are open to me. I will live with an open mind and an open heart and accept gratefully all that this life has to offer and teach me.

I will LIVE.

I will BE.

Authentically, unapologetically,vulnerably, joyfully, painfully, hopefully… me.

Jill

Individual

Woman

Mother

Daughter

Sister

Friend

Just Getting through the Day

I stare at the blinking cursor willing the right words to come. They don’t come. And I continue to put more pressure on myself and they get further and further away.

With only 3 days looming until the anniversary of Mae’s death her mother Susan’s words to me from the funeral haunt me. (She was comforting me when I should have been comforting her. But that is Susan. Generous and giving.) We clung to one another in the way that only grief can make you and she said “Never stop writing. Your words touch people. They matter.” I promised. I have failed at my promise. But I keep trying.

And hoping.

Why though do we never talk about the dark side of hope? The nagging fear that we may be holding on to hope that is impossible? Should we temper our hope or let it run free even in the face of seeming impossibility? How do we hold onto it then? Do we try to balance it or indulge it blindly? When do we let go of hope for certain things so that acceptance and grief can change our direction and focus?

All of the questions. None of the answers. Just overwhelming sadness weighing me down as I get through one more day. Trying to grasp at hope and feeling hopeless anyway.

Gratuitous photo of Haley reminding me that love is the answer even in the face of uncertainty and despair:IMG_3683

 

Hope and Hurt

I hurt… But I hope…
I hope… And I hurt…

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Because even in the darkness we trust that light will come. We don’t have to see the light at the end of the proverbial tunnel to know that it exists.

Those statements sum me up. And I could add paragraphs of words that try to explain the coexistence of hurt and hope in me or justify how or why I feel that way or why it’s so damn important to acknowledge BOTH. But today it’s enough just to say that I hurt. But I hope. And I hope. But I hurt…

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Because nothing gives perspective like the ocean and the ever changing tides and shore line. 

Catching Sunbeams

Catching sunbeams.

For months I couldn’t write. Not a word. I called it choking on words. I was really choking on grief. The grief remains but the words came unlocked. Well. Maybe not fully. But enough to try again.

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Last weekend we spent the day at a lake. Surrounded by family and love and all of the offerings that being together on a lake bring. Swimming and laughing and splashing and fishing and fun. I snapped photos of cousins whose love transcends the time between visits in that way that only exists between cousins.

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Going through those photos I found one that took my breath away. Instantaneously. A gasp at the beauty of my daughter with her hand outstretched. I showed it to her and asked what she was doing. She replied “Catching Sunbeams”. And my first thought was Oh how I hope you see your own radiance. The sunbeams that live within you. Because I do. My second thought was that’s a damn good analogy for special needs parenting. Maybe even parenting in general. Maybe even life.

Because…Aren’t we all just catching sunbeams? Grasping at intangibles? Trying to hold on to the light in our lives while lighting the darkness for those we love? For me as a Mom it’s holding onto the memories of the good times while wading through the bad. It’s appreciating the good days all while trying to hold the memories of the bad ones at bay. Fighting not to let them encroach too far. It’s seeing the light in my daughters eyes when they are happy. Sunbeam moments are fleeting. Clouds can move in or the night inevitably darkens the sky. And we feel the absence of their warmth and radiance. For me the key is remembering that the shadowy, cold, dark place is temporary too. There are more sunbeams around the corner. Stretch out your hands and heart and see how many you can catch too…

We Think We Know Grief

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As special needs parents we think we know grief. We think that we are intimate with it on a daily basis. We think that it cannot surprise us anymore with its intensity and pain, and the vast chasm of loss. It can. It does. Every time.

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We think we know grief. We grieve for every missed milestone and every experience. We grieve every birthday party invitation that they don’t get. We grieve the skills they fought so hard to achieve and lost overnight inexplicably. We grieve the childhood we thought we could provide. We grieve the loss of innocence and the distrust in their eyes as they look at you in surprise every time a needle is poked at them. We grieve the parent we thought we would be. We grieve the vacations we can’t take, and the hospital stays that replace them. We grieve the loss of friends as one by one they drop off unable to listen to your sadness anymore, unable to relate. We grieve the missed experiences and the lost moments. We grieve the before. Then we grieve the after as the after continually changes.

We think we know grief. Because we grieve when someone far away loses their fight. We grieve from a distance along with other parents whom we’ve never met who experience the imperceivable loss of a child. We grieve as a community.

We think we know grief. Until a child that you’ve held in your arms, the daughter of a friend, is the one that you’re grieving.

We think we know grief. Until a girl who snuggled up with you and shared her favorite blanket and special Froggy with you is the one that’s gone.

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We think we know grief. Until you wake up and find your own daughters hair wet from tears you cried in your sleep.

We think we know grief. Until you hold your child and cannot find hope or gratefulness in your heart, only guilt. Only guilt that your friend miles away has vacant, aching arms. Only guilt that there are so many other mothers like her. Too many mothers.

We think we know grief. I hope I never know the unimaginable grief of an empty bedroom with a rapidly fading smell. I hope I never know the grief of my daughters voice left only as an echo. We fear grief.

We think we know grief. Until it has our head hanging over the toilet trying not to vomit from the shock of it.

We think we know grief. Until we are on our knees wailing with it. Sobbing.

We think we know grief. Until we are clinging to another Mom on a cold windy overpass greeting the body of a child on her final journey home. Asking each other unanswerable questions like why? how?

We think we know grief but every time we find it surprising us, ravaging us anew.