Some people admire the strength of these warrior parents who battle for the lives of their children. Some people ask how do these parents do this. Some people even say that these parents are like super heroes fighting what seems like a lost cause. Some admire their determination to prevail. Some people may think that after the BMT period, and when the little warrior has survived, life goes back to normal. Unfortunately reality proves to be very different, as it seems from many blogs we follow of fellow HLH parents as well as our own experience, many of us parents post-transplant continue to experience a form of concern and anxiety. Some call it post-traumatic stress and some just call it experience from the past. All I can say for our family is that we ain't no superman, we are just gorillas in the mist.
For the past year or more out-pour of support has come in from all over and in many forms, people rallying to find a donor to words of encouragement on the blog. During the darkest hours, all the support gave us the energy to keep going. To keep functioning while sleeping 3 maybe 4 hours a night for months in a row. To keep smiling while exhausted, knowing very well it could be the last smile for a long time. It was as if the constant love and care of people we knew, or didn't know, fueled the run-a-way train boldering through our veins; nothing could stop it, nothing could stop us. The cheering sounded like military drums on the battle field feeding soldiers going into battle with courage and strength. It made us feel like super heroes who could save the world if need be. As support grew and kept growing so did our confidence that we would prevail in our quest. It felt like we could fly to the moon if it would save Miabelle. It was as if we could spin around the globe to reverse time, if only we could. Don't understand me wrong, we did not feel invincible but we felt energized like never before. Even still thinking about it now it energizes us like no source of energy ever could. It felt amazing to feel like some days like a super hero.
Sometimes I wonder if super heroes suffer of short term memory loss because having the burden on your shoulders of saving the world and fighting evil constantly must be exhausting. Just imagine the none stop depressions afterwards and the post-traumatic stress levels these super heroes must have if they did remember every battle they fought and the lives they saved or the ones they didn't. Or maybe their brains are super powered to resist any feeling ... yet in movies they always find their damsel in distress so they must have feelings... or is it an act to disguise themselves behind the beautiful damsel because it is the damsel that makes them stronger. I am not intelligent enough to figure this one out but all I can say is that unfortunately no parent has short term memory loss. It did come as a disappointment to me to realize that, in reality, because our past shapes our present - our present defines our future, we are no super heroes ... we ain't no superman.
(I had bought a yellow cape, some red tights and a black mask but regretfully I had to leave them in the closet. V thought it would be ... how would I say ... "Oli get a grip you would look ridiculous as a 600 pound super hero dressed in the colors of the Belgian flag, plus you cannot even fly!"... needless to say, my dreams were shattered once again)
Although the care and support were key to our survival as a family and it energized us to the point of feeling like super heroes, reality proved to us that we are more like gorillas. Before this experience started, you could compare our lives like a happy nest of gorillas. Mama gorilla was watching over the baby gorillas, while papa gorilla provided for food and shelter. Our jungle was lush and beautifully peaceful. Not a cloud in the air (I mean there were some), the baby gorillas monkeyed around with nothing to worry about. And it seemed that all the other gorilla's nests were fine as well, even that this peace was eternal. Then, the season of mist came upon us. It made us nervous just like gorillas, our primal instincts were at heightened levels, and while mama gorilla kept close to the baby gorilla, papa gorilla would pace nervously back and forth. Out of the mist came the hunters of death firing their bullets aimed at gorilla Miabelle. And although mama gorilla would form a cocoon around her and papa gorilla would smash the pavement, pound his chest, growl to the top of his lungs and punched with all his force into the mist, it was as if it did not matter as the bullets would pierce through us taking our confidence and energy away. They did not kill us because they were not meant for us and all the cheering from other nests (our supporters) made us stronger than ever before. It didn't matter how hard we swung at the hunters, they just disappeared in thin air and reappeared somewhere else. It felt like an army attacking our nest. Our primal parental instinct to protect our offspring had activated fueling the adrenaline in our veins even more. Protect at all cost! However when the hunters of death have you in their line of fire it is unlikely you will come out untouched... so continuous our story today.
Now that the mist has lifted and the hunters of death seem to have disappeared with it, baby gorilla Miabelle, who showed amazing strength and courage in dodging them bullets, has now only scarfs of courage to show for her battle for life. Life is becoming as normal as can be with adventures to the park, meeting angels at the zoo and fabulous lunches at a restaurant. Being able to leave the nest feels like heaven to us. Although many people assume that now everything should just be fine, we regret to disappoint: our nest has been threatened and our heaven is therefore very different than yours. Papa and mama gorillas' primal parental instincts seem to still be on alert, unable to shut off. Some of us HLH parents have it more than others but most are unable to fully turn their primal instinct off. You remain the gorilla that fears the mist. Your mind can fully appreciate the pursuit of a new normal and happy life, which is why I called it heaven. However you remain extremely sensitive to your surroundings in fear of encountering new potential hunters. We follow many blogs and the hlh family facebook page and it is very clear that some of our fellow parents remain pacing nervously back and forth, including us, not allowing the mind to finally rest ..., for some, even years post transplant. It is as if tour eyes have been opened to something we never thought possible. Our privilege of selective denial has been revoked. This feeling of being on constant watch is mentally exhausting. It is as if our minds have become our own kryptonite.
In the pursuit of normalcy, we take many precautions that healthy families don't. We clean tables when going to the restaurant, we avoid the public sneezers and coughers (and if we encounter some we feel anger towards such people), on cold (below 70F) or rainy days we stay indoors, we lotion Miabelle up with 70PSF constantly when going outside and avoid the strong sun like vampires, we try not to touch our eyes, nose and mouths because they are the primary gateways for virusses entering the body, etc... all this in an attempt to avoid the mist and its hunters. There are days I still pound my chest and growl on the top of my lungs chasing imaginary mist that is not there; just worrying about liver enzymes, bacterial infections and engraftment results. The thought that a Bone Marrow can fail years post transplant allowing HLH to come back sends chills up our spines making us pound the pavement even harder like an enraged gorilla. And yet where is the mist? Both v and my primal instincts are still on alert (mine more than Vs). In addition, we morn when we hear the loss at other nests, although we may not have known the family, we can barely imagine their pain. We hear their cries at night and when we go to sleep we hope that destiny will spare our nest as well as those around us.
"Oh no! They are living in the past" is what some may think. Maybe but we disagree, this is not a question of living in the past, this is a question of knowing what could be and still can be. We met parents in the hospital who's child had a failed transplant 3 years post his first BMT. Not only had they never expected this but the mother informed me that even 3 years post the 1st BMT she was still whiping the counters and cleaning the house. We enjoy every moment in the pursuit of normalcy, and it truly feels like heaven, but it seems that our heaven comes at a price. Once this primal instinct is activated it is hard to shut down. We regularly impatiently wonder like nervous gorillas, and although the mist has lifted and the hunters of death have gone for now our minds see their shadows, our primal instinct tells us to be on guard and we are still growling pacing back and forth. We are the product of our past and only the sand of time will eventually lift this mist we see.
Years ago I would have been one of those people saying "ok the worst is over, stop whining already and start living" and yet now I realize that "yes the worst is over but don't underestimate the wrath of nature". Maybe it is not living in the past but its the fear of what still can be. Can V and I see Miabelle suffer again through so much pain? Could our family absorb another shock of this size? Why do you think we freak out when Noelie has a fever? We know very well she does not have the gene that causes HLH/FLH and yet fevers trigger an immediate fear in our hearts that activates this primal instinct even further. We fear the wrath of nature because we know that very bad things can happen to children for no reason, who by definition don't deserve it. Just go and visit a childrens' hospital or imagine Miabelle could be your child, your heart will shatter in a thousand pieces unable to ever be recomposed like before. Of course we could go to battle again, our despair would feed our anger and the love and care from others would fuel our adrenaline allowing us to regroup and fight another day. We would fight like scared gorillas. It is not the fear of fighting nor the fear of tomorrow nor the fear of what could have been, but the fear of nature or destiny or what unfortunately still can be.
Don't interpret this blog wrong, there is no need to feel bad and certainly no petty. The purpose of the blog is to give you a glimpse of what life is and can be for many of us post BMT. We are very blessed parents because our journey so far has been easy compared to many of our fellow HLH parents who in our eyes are the true super heroes. Those parents whose kid or kids have not been as lucky as Miabelle and now morn an empty nest. Those parents who tonight are sitting in the hospital next to the bed of their child praying for mercy as their child is in critical condition fighting hard to live another day. Those parents who have been fighting alongside their child for weeks, months and years. Those parents who desperately are looking for a donor but cannot find one. Those single parents who fight this war alone. And those parents who have lost this war and now get up every morning to help others win it. Although there may be days they feel like lost gorillas, those parents are the super heroes.
What may have appeared to many including us as having super human strength at the time, now clearly was rather the experience activating our primal parental instinct to protect our offspring. It gave us what seemed super human strength (superman for a day) enabling us to live days, weeks and months through excruciating mental pain. Weakened by the hunters bullets we stood strong as the support from others made huge quantities of adrenalin run through our veins. However now that the adrenaline has gone, we are just left with this instinct controlling our daily lives. It will take time, lots of time, and patience from our family and friends to see us gradually rest our minds. But the good thing is that, for now, it seems that we finally may have all the time we need to heal. For now, there is no clock ticking day and night. For now, all we need is to find a way to control our minds. And like for every battle, victory starts in the mind.
May our experience show that we ain't no superman, we are just gorillas in the mist seeking a new nest to rest.
PS: our apology for not updating the blog as frequently but we are very busy pursuing and enjoying happiness these days. We regret that this may impact your coffee breaks and will resume soon with more frequent postings. Know though that we are savoring life to the fullest.