Friday, May 5, 2017

A Monster Turned Ghost

It passed without me even knowing it. April 14th made 6 months since we have seen Oliver have a seizure. I have spent the past seven years of my life on high alert for the slightest indication that his body was about to begin jerking and trembling and those beautiful lips turn blue. I can tell you every road or parking lot in Wilmington I have pulled into when he would have a bad seizure in the car. I would throw my minivan into “park”, dash around the side, rip the side door open (no time for that smooth automatic door), and say “breathe Ollie, breathe.” I would gently cradle his head in my hands to open his windpipe by titling his head  back and softly ask him, like I’ve done 100 times before, to “come back to me...please come back to mama.” And eventually he would. Sometimes with the help of a rescue med, most of the time without. He would gasp for air and those lips would turn red again and he would peacefully sleep off the highjacking of his brain that just happened.

I do not miss those panic stricken moments, but I honestly don’t really believe it is over. It seems too good to be true. Have they just...stopped? For real? I always thought the stories of “growing out of epilepsy” were just unrealistic, at least for us.

Happy Boy watching One Direction videos 

But you know what is oddly comforting? The seizure monster was a known enemy. We knew what we were fighting. We knew how the epilepsy worked. We knew how it robbed Ollie of his development and a few times even tried to kill him. Our team to fight the monster was well defined. Our weapons, the rescue meds, were sophisticated and at the ready. We had charts and laminated sheets all over the house with instructions of what to do when the seizures attacked. I felt as prepared as I could be. I felt organized and not alone. So many mamas are fighting this monster everyday.

But since this past fall we have been fighting an unknown enemy. There has been a new monster in town since September, but we don’t even know what to call it...

Yesterday, Oliver had his colonoscopy and it came back 100% clear, normal and healthy?! Last week he had an abdominal MRI and it also came back totally fine. Not one thing was out of place on either test, nothing was inflamed or out of order? How is that the case with all of his gastrointestinal issues? I am truly perplexed.

Looking with love at his papa before his colonoscopy at UNC

One thing about all of these tests--the anesthesia recovery process is getting more challenging. No more propofol, no more ketamine, those two aren’t our friends anymore. So, we have decided to take a break for the whole summer from any procedures, sedations, tests or unnecessary blood work. We want to give Oliver a 90 day window of no pokes or scanners or medical stressors, if we are able. It is the summer after-all and let’s be honest, it appears “the answer” is as elusive as it ever was.

A year ago we had a boy who ate and drank normally. He ran and jumped for hours. He was progressing academically. He never experienced pain. Like ever. He was a handful, he was challenging and he always walked around with an array of diagnoses, but he didn’t look like a malnourished child.

So who or what are we fighting? Our Boston team does not believe that Ollie has a Mitochondrial Disease. They told me on a call about a month ago that they do not know of anyone living or dead that is a confirmed case of both TSC and Mitochondrial Disease. Oliver would be the only person in history that they know of. Our UNC team thinks he is having a decline that is slow and may have some yet-to-be-discovered underlying cause. Or they have hypothesized that his body could just be wearing out, which seems inconceivable for an eight year old. Here are all the questions I have been asking all of our doctors and they ALL have the same answer: “We don’t know” (Sigh).

Will he return to baseline?
Is this our “new normal?”
Will he continue to decline? If so, how fast? What if he plateaus, how long will that last?
Will we be able to get him back to his ideal weight of 65 lbs?
Should we pursue having him return to school in the fall?
Should we get even more in-home care?
Is this a mitochondrial disease?
Is this a rare manifestation of Tuberous Sclerosis?
Is this related to his Autism?

I could go on and on, but you get the idea. Since September, we have basically been playing the rule-out game. We have ruled out a host of issues, but still no rock solid diagnosis. I hate this game. This is when having a child who could communicate would make a huge difference in trying to sort through what is going on.

So we fight the ghost now. No longer Monster #2, with a face, a name, but a ghost.

I guess in some ways the only way to fight a ghost is to lean into the world of the supernatural. So we will continue our path with prayer in our community of believers. Who know that hope, faith and love are the key ingredients for a good life. We’ll cling to that truth even when comfort and health seem elusive.

We don’t know what the future holds, which drives me nuts. It could be tragic and heartbreaking, or we hope it will be triumphant and inspiring. I doubt we’ll ever get back to “normal”...which was never that normal anyway! I trust we’ll grow into this new, ever complicated world of Oliver’s care. I know we’re grateful for each day we keep the seizure monster away even if there is a new ghost that haunts our house and our lives.

On the road again to yet another appointment

Control is such an illusion. I love Brian Tracy’s quote “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.”

Mr. Sleepyhead waiting for an abdominal x-ray

And now these three things remain:
faith, hope and love. But the greatest of these is love.
(1 Corinthians 13:13)

Sunday, March 12, 2017

Hijacked By Beauty

Outside the window are huge, wet, sloppy snowflakes falling fast, yet softly. I walk outside to catch them in my hands and they melt on contact. Andrew is still asleep, we both feel like we’ll never recover from the painful sleep deprivation of this fall. I truly don’t know how we survived it.

I like the snow because it causes me to actually stop. How can I feel stressed when I look out at that white magic and take a deep breath? It is like God is showering my backyard with calming confetti. I curl my fingers around my coffee cup and throw a fluffy blanket across my lap. In the South snow makes everything stop.

Sometimes we need our schedules hijacked by beauty.

These days it feels like we are walking a tightrope with Oliver’s health. A small gust of wind or a lapse into dehydration can send us tumbling down. In the past, I used the phrase “medically fragile” to describe our situation; now I feel like that is actually our reality. The threat of going back to the hospital is a fear based in reality.

But if I am honest, sometimes I miss the hospital. I don’t miss the terrible pull out bed that makes you feel like you slept on steel rods, or the endless beep of the monitor. I miss the simplicity. Just like snow stops the South, hospitals cause you to hit pause on virtually everything in your life. When I am in the hospital, the world is about caregiving and nothing else. Every single move I make is about Oliver’s care. Andrew and I’s conversations orbit around him and we click into hospital mode, where we work so well as a team that we even surprise ourselves. The hospital doesn’t feel like a tightrope, because there is a safety net and people on every side to catch you.

There are two factors to Oliver’s health that require intense monitoring everyday, the input and output. We have to get 1800 calories, 55 oz of water, 2 wet diapers and 2 dirty diapers a day just to maintain his health and weight. This is not easy to accomplish, and sometimes causes us to do crazy things.

The other day we were so focused on enemas, catheterizations and getting to our output count that we got behind on calories through the feeding tube. So in the afternoon, John and Angela took him around to tons of places to see if they could get him to eat. You can only get so much nutrition through a tube in a 24 hour period. They tried it all...cheeseburger, no thanks. Taco, not today. Donut, not in the mood right now. Yogurt parfait, not my favorite anymore.

By now we know that the initial genetic tests didn’t show anything definitive. He will have another wave of testing that will take a few months. By the end of the summer we might know more; then again, we might not.

When Ollie was diagnosed with Tuberous Sclerosis we were so thankful to have a community, clinical trials, advocacy for research dollars, Facebook groups, etcetera. We never felt alone with the diagnosis, and could quickly identify what we needed to do to get him the best care in the country.

Not so with Mitochondrial Disease. I feel lost. I am not a stay at home mom this time, so I don’t have time for endless hours of research. I feel torn about juggling all the responsibilities I have this time around. This diagnosis also comes with g-tubes, catheterizations, feeding teams and staying out of school. It flipped our world upside down in a way that Tuberous Sclerosis only did gradually.

These days, we often put Ollie in the bathtub to help with his stomach pains and G.I. issues. He loves it and happily splashes around or spins the wheel on a toy truck for an hour or two. We have never been big fans of the bath because of his seizures. Since we haven’t seen them in almost 5 months, we are feeling more open to it. Oliver has our master bathroom, so he has a huge triangle shaped tub. We are so pleased he likes it and it provides comfort for him, especially on days when he is working through painful constipation or gas pains. When he lies all the way down in the bathtub his ribs poke out, his little gtube sticks out above the water line, and his face is often dotted with bubbles on the edges of his hair line. As he giggles, I smile, but I also feel that deep pit in my own stomach, worrying about his frailty. I know a stomach bug or the return of the seizure monster could put him in a life threatening situation. The tightrope life means you have to stay focused, even when you need a break or feel exhausted.

I want to pull his thin, wet body out of the water carefully and slowly to making sure he doesn’t slip, and then hold him in my arms. I want to wrap him in a huge, warm towel that smells like lavender and tell him I am so sorry that I can’t control the length or even quality of his life. I want to whisper how unfair all this is as I tuck his wet hair behind his ear. I want to tell him that all those things I shouted after he attacked me in the wee hours of the morning in October weren’t true. I said things I regret. I truly thought I was going to shatter into one million tiny pieces. I want him to know I can handle this new tightrope living, even though I said I couldn’t. And I want him to know that for every strand of hair he ripped out of my head and every scar from bite marks he left, it never changed my love for him. I now know how much he was suffering. I will always feel brokenhearted that I didn’t know his aggression was an expression of extreme pain that I misread.

On the whiteboard in our living room we are tracking all these metrics. Nurse John remarked the other day, “It takes so much work just to keep Oliver alive.”

Andrew just came downstairs. He looks a little more rested than yesterday. I wish I told him more often how much I love him. I want him to know how much respect I have for the way he has handled the past 6 months of exhaustion; screams of pain, that life-changing diagnosis, sleepless nights and rapid response teams. His noble character shines so brightly. I feel so thankful that Ollie gets to have him for his Dad.

Andrew stands at our front window and marvels at the white wonderland that has appeared in an otherwise warm and early Spring. It is a sweet Sunday morning surprise for two often broken and weary people trying to love each other all the way through the unimaginable.

The snow is still falling swiftly and my coffee has cooled. It is time to crush pills and draw them up, place the syringes side by side on a tray and push them into the tube. There is a long list of caregiving tasks ahead, but isn’t the sweetest kind of providential gift when an everyday life is hijacked by beauty?

Thursday, February 23, 2017

Ollie's Back and Feeling Good!

We confess that we had forgotten what Oliver was really like. We forgot the effervescent joy of tickling him until we are all howling with laughter. We forgot what it was like to watch him, from across the room burst into spontaneous laughter at a video on his iPad. We forgot what our boy is like when he is not in pain or discomfort. His baseline personality is happy and joyful. At his core he is playful and affectionate, but the diseases and discomfort rob him of the uncomplicated life an eight year old should have.

The past days after returning from the hospital, Mr. Giggle Pants has returned. We feel like a black cloud has moved off of the top of our house. We are both finally exhaling a little bit, and it feels so nice. The diagnoses remain. The sadness is pervasive, but not always defining. We are so thankful for this reprieve. All three of us feel a little more buoyant than they have since last September, when our world started to unravel.

The lightness we feel may also come from the fact that we have finally gotten our arms around the meds, the feedings, the appointments, the 14 in-home nurses, therapists and workers to manage for Ollie’s weekly care. The complexity is now more routine than overwhelming. All that seemed impossible on January 12th; but work hard on anything for 45 days straight and you’ll get better.

Last Thursday, we felt an enormous weight of worry with him collapsing dozens of times a day. We had a total rush of adrenaline and felt we were heading in a bad direction, fast. What is remarkable about Oliver is how quickly his body, mind and mood can swing. He was in a seriously life threatening situation only 5 days ago, and now is breathing normally 85% of the time. What is going on with this kid?

Today, we are on the road again for Oliver’s pre-scheduled appointment at UNC’s Pediatric Clinic at Rex in Raleigh. We went to meet with the Feeding Team; an interdisciplinary team that includes a speech therapist, dietician and PA from the GI department. It was so reassuring and helpful to have all three of them in the room collaborating on Oliver’s care. We feel hopeful about the changes we will be making, and hope they will (for real) keep us out of the hospital!

So we are hoping the good times keep rolling over here at Lanier Landing. We pray that black cloud gets a little less dark and hovers off to the side for a few months. It sure feels nice to see the sun break through those omnipresent clouds, and let it warm our weary faces. Is it naive to think that perhaps spring came early not just to the daffodils in our front yard, but also in our lives? Perhaps, possibly, the dark season has ended and we’ll get to enjoy a spring, summer & fall season before going through another winter? I love this John Bunyan quote, “it is said that in some countries trees will grow, but will bear no fruit because there is no winter there.” The important thing to remember is there is a reason for winter. Suffering is not entirely wasted unless you allow it to be. Our dark season with those long nights and brutal conditions does have a purpose. Without winter we can’t really bloom. And wouldn’t it be a tragedy if we never get to see one another’s full beauty? Without winter we can’t bear fruit. And fruit is always the external evidence of what the tree is really made of. If it is a good tree, the fruit it creates is not only beautiful, but it can feed and care for others. So perhaps we shouldn’t always want to skip winter, but learn to embrace its cold beauty.

There is a time for everything and a season for every activity under the heavens
(Ecclesiastes 3:1)

Sunday, February 19, 2017

Surprise...We're On Our Way Home

Most of us make what I call "Tylenol Choices" for your kids. Your kid has a fever and you give them a dose. You don't worry if you are causing harm or about the implications of that decision. You just do it. The risk vs. benefit isn't even something you have to consider.

When you have a medically fragile kid those Tylenol choices are rare. Most of the time you are weighing complicated decisions where the risks are serious, sometimes even life threatening. This kind of wartime parenting is exhausting and I've written about it often. I am weary of those decisions where harm is likely on either side of the equation.

Enjoying the sunshine while waiting for Papa to bring the car around

The decision to be discharged today is one of those tough ones, but we (along with the medical team) have decided it is time to head home. We are already in the car on our way to our house! The team recommended getting a hockey mask, but we just tried that at a used sporting store and clearly Ollie isn't going to go for it. Right now, our plan is to use a bike helmet and then go from there. There is every reason to think the collapsing will continue, we just have to try our best to keep him safe.

Sadly, we left with no all. It is so frustrating. In the past 12 hours Oliver had an EEG and it showed no seizures. We did find out that he has low iron so we have a supplement for that, which may help a bit. We are titrating up on a few new meds for his collapsing spells,  but based on what we saw in the hospital it is unlikely they will fully address the problem. Sigh. Ugh. I just want to throw my hands in the air and yell "for real !?!"

So we are coming home and hoping that this gets better. Staying in the hospital has real risks including the risk of picking up all manner of viruses, the flu and respiratory infections. We have already had a scary brush with bi-lateral pneumonia back in October, likely caused by a prolonged hospital stay. Remember how that landed us in the PICU with sedation and high flow oxygen? We do not want to repeat that experience!

We return to Raleigh on Thursday for more appointments at Rex with some of our UNC team. We figure if things are still really bad we can come back to Chapel Hill, but we SO hope Ollie gets better, somehow, someway.

In this moment, we are trying to not feel overwhelmed and focus on this beautiful day. We are looking forward to our big fluffy bed, and the tangible and delightful comforts of home. As always, we couldn't have done it without our huge, beautiful, generous and humbling support network. Thanks for sticking with us through all this. You're the best!

Saturday, February 18, 2017

Saturday 2-18 Update

It feels like we have 50 different enemies with all these health issues Oliver has, and yet (praise God) we have much more than one friend. Today has been sprinkled with visits from dear friends, good food and even some laughs. Oliver is more comfortable today, and hyperventilating and passing out a less. The issue is not fixed, but he does seem significantly better. We have been able to get him out of the room for several short walks and wagon rides.

Surprisingly, he is also running a fever to the tune of 102.7 since this morning. Once again...we are perplexed. He also has lost 5 lbs since coming in the hospital, so we are working hard to keep his weight in check.

The neurology team wants to do an EEG to make sure we can rule out seizure activity with the breathing spells. We hate to put him through that yet again (we just had one in December), but we really do need to be able to definitively rule out seizure issues. Getting one placed on the weekend is next to impossible, since the EEG techs are in low supply.

We are trading off sleeping at the Jens’ home, which is 5 minutes from the hospital. It is a wonderful escape to normalcy for us.

Thank you for cheering on our family. You are all now intertwined with our story, and I feel like we are on this journey with an army of other people.

"Do they make a bigger one of these?" 
Never alone and always loved is a good way to feel. You've done that for us, so thank you!

Friday, February 17, 2017

Such A Puzzle

We are settled into our "home away from home" on the 6th floor, where we have reunited with so many of our nursing friends. We have to be the biggest fans of UNC Children's Floor 6...such good people here, we wish we could introduce you to these incredible human beings. Today we are working on Oliver’s constipation (i.e. he is getting another clean out) as well as meeting with dozens of doctors. We have actually gotten tired of talking, especially retelling Ollie’s story “from the beginning.” We are tinkering around with some medications and trying to figure out a plan of action for the fainting spells, but so far nobody has a brilliant solution. We wish there was more we could tell you, but as the neurologist said, “Oliver, you are such a puzzle!”

Mama stealing kisses 

Y'all are so sweet...we can already anticipate the texts and FB messages you are going to send:

Is this related to his Mitochondrial Disease? Probably. Do we know more about the genetic test results? Not yet. Does this have anything to do with Epilepsy? Probably not. Is this a self-stimulating behavior related to Autism or Sensory Processing Disorder? Maybe. Is this seen in other kids with Tuberous Sclerosis? No. Do you know why he is doing this? Not exactly. Is he feeling discomfort or stress and trying to soothe himself? Probably.

Do you need anything at all?!? Actually we could use a box of nice tissues with the aloe. The hospital ones are sandpaper and sometimes we do cry. This is hard on our hearts. We would also like a continuous IV drip of coffee. 😂

How long will you be there? We don’t know, but probably at least until Monday.

One of the few smiles from today. We worked hard for this one!

Per usual, we have more questions than answers. We are getting more comfortable living in the land of unknowns. It is an emotionally draining place to be, with questions about life expectancy and quality of life always swirling in the background.

Reading books with his cousin, Jackson, who took a break from classes to pop in for a visit

No matter the answers we do or do not get, we are going to live life the way we’ve been living it---with intention and gratitude.

Back Again

Facebook post from yesterday that I forgot to post here

We are back again 😔In the past week or so Oliver has developed an incredibly scary breathing pattern where he hyperventilates and then holds his breath until he passes out. Initially it was only happening once or twice a day, but as of this morning it is happening constantly. He has passed out upwards of 40 times today?!? He already has a black eye from falling on Sunday morning and we are afraid he is going to have a serious head injury due to all the collapsing. Our doctors have recommended that we come to the hospital, so we burned rubber on I-40 to get here. Andrew and I are more and more convinced that he is having some kind of pain, and this is the only way that he is able to soothe himself. The unfortunate thing is that our doctors at every institution (and we have many!) have never seen this before, so everyone is perplexed. It is really heartbreaking to watch him go through this. 💔🙏

Tuesday, February 14, 2017

It's Valentine's Day...Don't Take The Bait

People say all the time, “I don’t know how you do it.” They want to know how one thrives in the midst of facing an all consuming diagnosis that radically reorients your world. My answer is straightforward. It is all about that voice that is running in the background of your mind. It is incredibly powerful, shaping your life, personality and mental toughness. That voice will make you or break you...especially in the midst of an ongoing sadness you can’t control. It can make your heart cold and your soul bitter. But it doesn’t have to. So here is my answer to how I “do it.”

I stay away from the “why” questions. Those drive people crazy. Those are the unanswerable ones. That question is a trap. Don’t take the bait. Walk away.

I stay away from the "what if" questions. Those make you live as if life has sliding doors. It does not. An alternate version of your life does not exist. This is your portion. For better or worse, it is your unique, never to happen again, precious life.

I prefer to lean into the “what is the lesson here" questions. Those questions make people wiser. Those make people beautiful on the inside. Savoring the lesson that is embedded in every hardship makes people able to see patterns of redemption and providence in an imperfect and disease ridden world.

So we have to practice getting that voice under control. Tell it who is boss. Tell it how to process the world. Teach it to see the lessons; the beauty of life that is right before your eyes. Train your mind to focus on whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable. If anything is excellent or praiseworthy--think about these things.

This will not save you from the deep emotional agony that comes with loss. This will not prevent the lump in your throat and the tears that spill out at the most unexpected moments. It will help you cope with the reality that sometimes things are out of your control. After years of getting that voice in check and focusing your mind and heart on all those excellent things, you will surprise yourself with stamina and emotional wealth. You’ll feel a heart that is (more often than not) filled with gratitude and joy...even at moments bursting with love. A heart that is full of all those praiseworthy things has little room for the dark demons of self-pity.

And the very best news of all is we do not have to do this alone. For the stunning truth is this: the One who is Love is there to rejoice over us with singing; to welcome us to the banquet table of abundance as His beloved. Only He can give you a new heart… a new spirit within you. Even in the reality of life’s stinging pain, He can remove your heart of stone and give you a beautiful and generous heart of flesh.

On this day of love may you feel cherished. May you feel alive from your head to your toes. May your heart of flesh be so full of love that it spills out blessings on all those you know.

No matter the diagnosis. No matter the heartbreaking unknowns.

Today and every day, step out in love.

Happy Valentine’s Day.

Monday, February 13, 2017

30 Days Home

Down a dirt road, on these unseasonably warm February days, Oliver has found a new kind of joy….horseback riding. He has gone two times now, and each time he has loved the experience. He sits really tall on the horse and smiles for the entire 60 minutes. It has been good for all of us to get out of the city and into the woods.

This morning we leave to go to Wake Forest for an appointment, blood work and an EKG with Oliver’s neurologist. Then we jet over to Chapel Hill for a 4:00 appt. with our critical care pediatrician, and the next day we have another 6 appointments at UNC. We took our vitamins this morning...this is going to be a marathon 2 days!

Oliver’s stomach issues seem to be almost completely resolved. He is sleeping well most nights, but he is still an early bird...6 am is sleeping in at our house. In the past few weeks, he had a brief (but scary) brush with vomiting and dehydration, but we made it through. With the help of the Complex Care Clinic doctors, we were able to use the g-tube to keep him hydrated at home until we returned to baseline. Andrew and I were really quite proud of ourselves that we kept Ollie well and out of the emergency room.

On the flip side, we are struggling to get Oliver over 60 lbs. He is on an 1800 calorie diet a day and we are still hovering at 59 lbs. He is quite active some days; jumping on the trampoline for hours, or hanging around the mall (his new favorite activity). He is not drinking well at all. In fact, some days he has no liquid intake by mouth. However if you get a taco or cheeseburger near him, he’ll always make room :-)

The newest symptom (and it is very concerning) is his breath holding.  Since December, he has done heavy breathing throughout the day, almost to the point of hyperventilation. This past week, he has added extreme breath holding to his repertoire. The problem is, he is often holding it so long his lips are turning purple and he is collapsing multiple times a day. He has a black eye currently from one of these falls. We are worried about a more serious injury from the falling, and the daily, repeated lack of oxygen to his brain. We think he is getting a rush from the feeling and it is making him do it over and over. The doctors are puzzled. We are thankful he doesn’t do it while sleeping, which would be much more serious.

We finally have our nurses and workers in a schedule. Oliver started homebound school last week in his bedroom, which is now part classroom as well. Yesterday made one month home from the hospital, and my goodness has it been a marathon! After 30 days I think we are finally getting into a routine, but we fought hard for it. It takes anywhere from 1 ½ hours to 2 ½ hours to get him ready for the day, so our mornings are very busy.  We repeat it all at night, not to mention the middle of the day tube feeds and meds.

In the next few weeks, we hope to know more about the genetic testing results. So far only one is back, but it is not enough information for them to make a decision on the MNGIE diagnosis. If he does have a specific kind of Mito, then the only change in our current treatment plan would be access to clinical trials. Sadly, the treatment options are rather limited, and quality of life is the focus. There are days when we feel we’ll have many more years with Oliver, and others where he seems so fragile and his body is falling apart. Mito is such a weird disease, and we are learning how to understand all the nuances. The seizure monster dominated our life for so long; we now have a new and lesser known enemy in the house. I am sure as time goes on we’ll understand the complexity better and know how worried to be about all the unusual symptoms that are constantly popping up. When Ollie was diagnosed with TSC, I was a stay at home mom and had hours and hours to do research. This time around, my time is more limited and Mito is incredibly complicated.

The Gofundme campaign has been such a huge blessing to us. We have tried to send thank you’s to everyone, but fear among the hundreds of kind people we may have missed some. Please know how much it means to have this financial freedom to put together the very best care plan for Oliver.

Andrew will be starting his work on “Good Behavior” in the next few weeks (it begins filming in late March here in Wilmington). The show has lots of buzz, and Michelle Dockery from “Downton Abby” is the lead character. In the meantime, he has been helping at LPG and running point on so many of Oliver’s needs. I am sure when he goes back to 50-60 hour work weeks, we are going to have to recalibrate how we do things at home. There I go getting ahead of myself; all we have to do is take it one day at a time!

I have been trying to figure out how to balance running the company and all the new demands of Oliver’s care. It has not been pretty some days, but it is getting a little easier every day. If you think we look like we have it “all together”...I assure you there are days when we are a hot mess, clinging to sanity and drinking way too much coffee. But honestly I continue to feel like the luckiest girl in the world because of our incredible work family at LPG. I can barely talk about them without getting choked up; they’ve really shown such leadership and character in the midst of this season. I feel it every time I walk in the office...this is going to be a really special year at our company. The synergy of the team, enthusiasm and genuine hustle are incredible to be around...especially on the days when I feel sad and downcast.

In short, we are fighting our way to a new normal. The beautiful thing is, we aren’t doing it alone. We have you, cheering us on every step of the way. Sometimes that is just what we need to carry on. Thank you.

Monday, January 23, 2017

Drinking Out of a Fire Hydrant....With a Straw

We must be willing to let go of the life that we planned 
so as to have the life that is 
waiting for us.
 - Joseph Campbell

Things are beginning to settle into a routine for us. Oliver is being privately tutored three times a week as well as getting speech, occupational and physical therapy at home. We are now trying to tackle a system for charting his every move with our 6 (about to be 8) weekly caregivers. Some patterns are already emerging that are helping us understand how the muscle weakness, eye issues, GI problems, clumsiness, aspiration issues, respiration challenges, etc. all fit together. 
It is not like it is bad for him all day, everyday. There are so many smiles and dance parties and joyful frolics on the beach. If you are lucky, you may get a head leaning towards yours and he'll let you kiss him. But his symptoms are like a moving target. Yesterday we saw: wandering eyes, dizziness, fatigue, cold hands, hot body with no fever, sweat beads on his face, intermittent heavy breathing, dilated pupils and some aggressive behavior midday before he got a pain med. That was a sample day for us and was only 4:00 pm. 
I have been taking a deep dive into understanding Mitochondrial Disease, and I'm wishing I was a stronger student of microbiology. I wonder if I will ever feel like I am reading English again? In the event Oliver gets a MNGIE diagnosis in the next few weeks, I have been hunting down clinical trials and treatment options. 

We've kept Oliver mostly at home the last week or so. Not only does he prefer to be at home (autism), but managing illness and infection is much more involved with Mito. We have an IEP meeting scheduled with the school on January 30th to discuss our plan moving forward. We don't want to make a decision about full time school transition until we hear about the results of the genetic tests. 
I feel in the past we were not sensitive enough to how much routine, stability and environmental control Oliver needs to thrive. I have not been in our house for 24 hours straight, willingly, in my adult life. I would have to been super sick or snowed in to stay here that long. It has taken this rather extreme extrovert (who loves to bee-boop around town) a long time to understand her house-cat son, who has a temperature comfort window of 68-78 degrees. I frequently get sad thinking about how house bound my motherhood journey has been. 

Until the end of February (when our 11 follow-up appointments and procedures will be over and we'll be 6 weeks post operation on the g-tube), we will be sticking close to home base. We want to keep illness at bay and get rested. Since none of us have slept well since September, we all have lots of of catching up to do. Andrew and I are going to bed early, but rarely make it through the night. Our dreams are haunted by this world we are living in with so many unknowns and bleak realities. It is unsettling to know that the most difficult days of your life are ahead of you. We believe our best days are too, but you know what I mean, right? These are emotionally depleting days.

The Gofundme page that our friend set-up for Oliver's trust has been such a blessing. It is a huge encouragement to know that we have additional resources to cover Oliver's needs, which have grown exponentially. We have been deeply moved and touched by the generosity we have experienced. We have never felt alone in all this, and it is a credit to each of you. You have lightened this part of our load and for that we are so grateful. 

The talented Will Page took these pictures of our family this week at The Arboretum, which is fun since that is where Andrew and I got married 12 years ago! Will has a really cool project he is working on called I AM ILM, in which he featured our family's story (and love affair with Wilmington).

All of this still feels like drinking out of an exploding fire hydrant with a tiny straw. We will get the hang of it eventually. How are we going to do that?  We'll keep showing up with our good attitude (and a HUGE cup of coffee) every morning, grateful for each day (which we do not take for granted). We know all our days are numbered. Each new day that comes we savor, we snuggle, we love so much it hurts, and we vow to keep giving everything but up.