In a few weeks you will be eight years old. It’s almost impossible to believe this as in my mind you are still that toddler chasing after me if I got too far. Wildly clapping, running saying mom mom mom mom mom mom…….then as you reach me (I was at most 20 feet away lol) an exasperated and relieved “mama” escapes from your perfect lips. As if all was right in the world again. I feel this way about you every day. As you become more independent and seek more space. I find myself anxious and protective yet also relieved. I know the world is a big and daunting place and even more so for you. As you have become more aware of your differences. Having Hirschsprung’s disease is not an obvious visual difference to others but you have come to feel it in other ways. Your desire to have friends here but not go play at at their house is something I suspect many children with HD feel. You have so many what if’s these days. What if my tummy starts to hurt? What if I have an accident? What if they ask about my scar? What if I need you mommy? It feels so natural to want to protect you from every possible scenario but I know that pushing you to do things socially and take risks is the best thing for you. Recently you came home from school and said you wanted to have a “meeting” with me. You looked very serious and very much like your daddy. I felt like a major acquisition was about to go down, then I remembered you were 7 years old. Phew. You said to me “Mommy one of the kids at school said you have a website about me and my pooping problems” At that moment I wanted to crawl under a rock and die. I however pulled it together, smiled and asked “oh and what else did he say” fearing that I have just started what was to become a on going thing with kids at school. My son was out of the HD closet. My worst fears slapping me in the face. Would you be teased about it? Did you tell your friend about it? So I explained to you in more detail then I had ever before about your disease. I have gone to such lengths to never label it or you. I only ever wanted you to feel confident. Turns out I have in my own fears of you being teased grossly underestimated the kindness and acceptance of children. You told me that you simply said “ya I used to have those problems but they are mostly better now, I have a hockey stick scar on my tummy wanna see?” Then you were done with it. The moment I had feared for 8 years was over. We talked a little more about Hirschsprungs, how and why I started the blogs and website. You were amazed to learn all of the work that I have been a part of because you. All of the families and children that have benefited and been helped because of you. You seemed very satisfied in knowing the good that has come from your situation and that we often in presentations show your picture and refer to you as our director of inspiration. Then we carried on with our day. Both of us with a greater understanding. I learnt that day That I don’t need to protect you as much as I think I do. You my sweet boy are very brave and very smart. Like your sister if I give you the space you will conquer the world. So I will open my arms and let you run a little further but keep them open for when you need to run back.
On that star……I wished for you……
Exactly as you are. 💗 with all your perfect imperfections and funny quirks, your blonde curly hair and full lips, your sarcasm and wit, the way you say I love you momma, and how you roll your eyes when I say it back to you a tad too enthusiastically. I love every single thing about you. You are growing up so fast. You are venturing out each day with a bit more confidence then the day before. You are still shy and reluctant at times but you are a far cry from the little boy who sat under a tree at school watching for my car. You are exactly seven and a half and I was really hoping that I would be writing my last blog by now. A “we finally have a handle”on your Hirschsprung’s entry but this doesn’t seem to be the case. It has been a series of ups and downs this year. As usual it makes no sense. No rhyme or reason to it. Nothing has changed but for some reason your bowels have become very lazy and uncooperative. (Well except you have that whole Hirchsprung’s disease thing going on) I feel myself getting so frustrated and at times even a bit short with you as you argue with me. I can only imagine how frustrating this is for you. I know you don’t understand why your body doesn’t work like everyone else’s. I know you get tired of my nagging and potty time entertainment. (I am a one woman comedy routine) we are now on a bowel regime of laxatives (which you also hate) scheduled potty time and the occasional enema. (Which the way you tell the story I am shocked no one has called CFS on me 😂) it’s been a tough go this year and in spite of my efforts there is little improvement. In the back of my mind I know that Based on your last two biopsies you are a candidate for a secondary pull through operation. If I were to be totally honest, I think I have known for awhile that you will likely need it but fear is keeping me trying everything else I can to avoid putting you through that again. If nothing else I have devoted my life to protecting and caring for you and your sister. The idea of you in pain or being afraid, is almost unbearable.
No one seems to have a definitive answer as to what should happen next. No one can tell me with any certainty an outcome if we decide on doing the surgery. So it’s you and me. It’s always been that way. Since the moment you were born. You and I have had this unexplainable connection. I would swear you spoke to me. If not in words, I always knew when you were sick. I knew before the doctors that there was something terribly wrong within hours of you being born. I would sense when things would become critical even though you never cried or made a sound before they got worse. So one thing I know for certain as I lay here now staring at the star I wished upon…….you and I will know.
We will know and we will do as we always do. Warrior on and I will be forever grateful that I got everything I wished for in you. You are my perfect boy. 💗
It is almost unimaginable to me that Malachi has started grade 2 this year. Much to his relief I did not hide out behind the tree’s to spy or “accidentally” show up 30 minutes early to see how it was going. I was….dare I say it…..relaxed about the start of school. Having a child with Hirschsprung’s disease is a challenge in that there are potentially so many things that could go wrong in a social setting. So many embarrassing things. Instinctively I want to keep him sheltered and protected from anything or anyone that could cause him any more pain then he has already endured. However that is not a reality and whether I like it or not he’s growing up and asking (demanding) more independence. Apparently it is no longer “cool” to be walked in to the school in the mornings and God forbid I kiss him good-bye in the car. Instead our new ritual is I pull up to the doors, he nods in my direction as if to acknowledge that he recognizes I need SOMETHING then he hops out of the car with his backpack and runs to the gate. All the while pretending he is not at all nervous. Then once inside the schoolyard he slows down and strolls to the school door. Just as he is about to walk through the door he turns to look in my direction and I get that final nod…….the I got this nod….you can go now. I cannot tell you how deeply touching it all is. NOT! (Insert giant eye roll here) I do sit there though in such amazement and gratitude for how far he has come. I watch him walk away and feel so much pride in all that he has so bravely battled and continues to. The teachers asked him the other day what his goals were for this year, to which he replied that he wanted to be a completely new person then he was last year. At first I was bothered by this as all I have ever done is protect and nurture my son so why was he feeling this way? Malachi explained that he wants to be more adventurous, more outgoing, and finally he said more like the other kids. So I have learnt that in order for him to be or do that, then I have to encourage this new independence. I know this about my son, he is a little warrior who has fought through a lot of pain in his short life. He rarely ever complains and never cries even in the worst of it. He has a strength that I admire so much. I told him he can be more outgoing but he has to still be him, because he is extraordinary. Someone told me recently that he was chosen for this life and all it’s challenges. So others could learn from it. So far this is true, Malachi’s story has inspired a great deal of work and growth in the HD community. I heard from a few families this week who’s HD children were starting school and were very nervous about this new beginning. All I can say is every child’s path will be different but hear them as they will lead. They will let you know what they need and in the end be stronger for all of it. It is easy for parents of children who have challenges to do what we can to shelter our kids, but maybe it isn’t what they always need…..
*Disclaimer I reserve the right to return to a neurotic helicopter parent at any point. lol
I have lived it with my Children. When Malachi was born with Hirschsprung’s disease I was beside myself. The first month I barely remember one day from the next. I never left the ICU unit. I held my son, wept and prayed. Repeat. My daughter Natasha who was 6 at the time had always been glued to me. We had been inseparable. I often talk about life with Hirschsprung’s from a parent perspective or that of my sons but the impact of a sick child goes far beyond. My daughter lost her mother, although temporarily, I was suddenly gone all the time. Distant. Worried. I can’t imagine what my daughter must have been feeling. She is so strong but she was only 6. It was then that I realized what the word “family” really meant. Family to me became those in my village, blood related or not that jumped in to what felt like my sinking ship to paddle. My family who stood beside me in the ICU, my friends who cared for my daughter and made sure she missed nothing, picked her up from school and stayed bedside with my son and I until morning on many occasions. The pediatric surgeons and nurses who would text me back at all times of the day or night to address my concerns. My husband although we separated during that time has always made sure I had the resources to do what I needed and supported our family. I was broken and my little family was falling apart. I lived in constant fear of the bottom falling out from beneath us for years. So many hospital stays, procedures and sleepless nights. I feared that every one of my daughters school events, birthdays or holidays my son would become ill and I wouldn’t be there for her. I remember driving home from the Children’s hospital with Malachi days before Christmas and calling my girlfriend and expressing my fear of not being home Christmas morning and how hard that will be for Natasha. (Feeling a little Sophie’s choice at times lol) My dear friend reassured me that if that were the case she would take care of it. That she would make sure Natasha had a great Christmas morning and she would come to the hospital and be with my son so I could leave for a bit then she would take Natasha to play with her daughter. I cannot describe the relief, knowing that I had people willing and wanting to love my family. I have actually lost track of the times my son has literally shit on my family and friends. Those bowel irrigations could get pretty messy. Lol Then there was my business that I had started the year before. I don’t know how my staff did it but not only did keep it going without me for a year……business grew! I remember staff meetings with Starbucks coffee, all of us sitting in my bed, Malachi laying in the middle. How lucky am I to work with such kind and compassionate people. The day my son had his pull through surgery…… The waiting room was full, his villagers arrived early in the morning and sat the entire day with me. Watching that damn phone and waiting for it to ring to say my son was in recovery. I was numb, and weak but the Village was so strong. I would need more then all my fingers and toes to count those who stood with us. Held our hands. Got in to the trenches. Showed us unconditional love. I could tell 100 stories of the kindness and generosity of those close to us. I will be forever grateful for the family that came forth. The “shit happens” campaign and the Hirschsprung’s community, a thought that became the start of great collaborations between families and physicians. I have been getting a lot of attention for my efforts and initiatives within the HD community lately. Again as flattering as it all is. These projects all took a Village to see them through. I am forever indebted and grateful for my villagers.
Here it is, please take a moment to look at the results of the University of Manitoba’s family survey then let us know what you thought….
Now that you have seen the results of the University of Manitoba and Children’s hospital of winnipeg HD survey from last spring, we would like to ask you to take 5 minutes to complete this quick survey as we value your feedback. Thanks so much. http://fluidsurveys.com/surveys/reachhd/infographic-questionnaire/
Every day more advances in medicine occur and most of us are blissfully unaware until it hits home. We are so honored and proud to have been working with such an amazing team of pediatric surgeons and doctors/nurses at the Winnipeg Children’s hospital on this HD survey and study. Check out the link to learn more about what this amazing team did and stay tuned for what’s to come…. http://www.wrha.mb.ca/wave/2014/11/engaging-the-patient.php
Malachi’s birthdays are much more than just a celebration with cakes and presents. It’s a reminder of all there is to be grateful for. I sometimes wonder if I will ever get over the anxiety of the first two years of Malachi’s life. Will I ever forget the panic and the worry? The sound of the machines in ICU? Singing and walking the halls of CK3 at Children’s Hospital. Praying, which is funny as I am sure God is thinking “who is this?”. I honestly don’t know if there will ever be a day free from worry.
I have long ago settled in to our norm. Our norm of no sensation to have a bowel movement, the pleading, begging and negotiating that goes on daily around potty time. The days and days of no bowel movements, chronic constipation, and buckling to the floor with gas pain. Then the relief that comes when you are moments from calling Cindy (God’s gift to HD families- our nurse practitioner) and he finally pushes out enough poop you can breathe again. Yes this cycle that repeats itself weekly is “our” norm. Don’t get me wrong I am not complaining. I am hopelessly in love with my children. I would not change a thing. It’s just our norm is, well, not THE norm.
Malachi started school this year. Yet another adventure of super over protective slightly neurotic mommy. I imagine myself i, lieu of tights and cape, in a hazard suit carrying an irrigation kit. Needless to say I have had several moments of looking like crazy mom to which the lovely teachers at his school smile and patiently reassure me. After all, is it really that weird that in the first few weeks of school I would go for lunch and sit at the kids table with him? Stop if you will and imagine the children looking at me, 5’10 with my knees to my chest in a child’s chair cooling off his soup by blowing on it. Then there’s my clever and oh NOT so very stealth parking job I do so I can see him playing at recess but he cannot see me. All so I can observe, is he happy? Is he making friends? TOTALLY normal stuff, right? Who doesn’t stalk their child’s school? School has been a big transition for both of us. Week one was difficult as Malachi tends to be rather gassy and was doubling over by mid afternoon in pain from holding in the gas. The solution was that Malachi be allowed to use the bigger washroom where the door locks. A mat was put in for him to be able to lay on his tummy and get the gas out. The more amazing part is that one of his teachers will usually accompany him and rub his back as it’s painful and that helps. None of the other children notice or know what’s going on and Malachi feels safe. That last sentence means the world to my son and I. He is safe from humiliation, ridicule, and teasing. The emotional scars that HD children all too often carry as they are the “smelly kid” or the kid still in diapers etc. My son is in school and he is safe. So I had a few neurotic moments at school. Okay maybe more then a few but he has settled in and happy. I have stopped as of last week stalking the school…well that’s something.
So, he has turned six now and he is happy, funny and a bit of a introvert at times. He likes to observe others and isn’t one to join right away. It bothered me at first. Not to worry though I bought a book on understanding and celebrating the introvert, so we are all good. I got this. #crazymom #backatit #alloverit
You and your sister have taught me so much about life, love, and what matters. There are no words for how much I appreciate your love for life despite the difficult days. Your sister, Natasha, has shown such incredible understanding and compassion as she has had to, on many occasions, take a backseat while we were in the trenches. Although it is your journey with Hirschsprung’s disease, we have all been blessed to be a part of it. You, my son, have taught us all what it means to overcome challenges and do so with grace and a sense of humor. When you woke up in the recovery room last April after getting botox and a biopsy, you opened your eyes and looked up at me and smiled. Then you said “That went well”. How you told me I did not need to walk you past the waiting room door to the operating room, then you glanced back and said “Mommy, I will see you when I wake up” in an effort to reassure me. Although I had my best brave face on, I think you are too smart and see right through me. That night your sister had a school play and I have always done my best to never miss anything that either of you have ever participated in. In fact one time when your sister was in kindergarten it was the annual school BBQ and coincidentally it was also the annual In Style Magazine party but I chose (begrudgingly) to stay in town to attend her school BBQ. Upon her request…she will pay for that the rest of her life. Anyways, now that I have driven the point home regarding my commitment to both of you, I did miss her last school play. She did not pout or say a word. The first thing she said after she got home was “How is Malachi?”; I am so proud of both of you. The love and kindness that you both demonstrate towards me, for each other and to others – it amazes me. I know that you are not even aware that you have Hirschsprung’s disease. In fact, I find it rather humorous how you think everyone has pooping problems and omits the “Crazy gas” as you do. My wish for you was that you would never feel different or abnormal. Life is funny and I, being the type-A personality that I am, had a plan for you. I was going to have you completely potty trained by age of 5 and have much of this HD thing sorted out prior to you starting school. Guess what? I should stop being a planner! We have the results of your last biopsy and they were not what I had hoped for. You still have what looks to be an area of aganglionic cells in your colon where there should not be. On the upside you were with me when I learnt this news and your vocabulary as a result became rather worldly. Should you ever decide to join the marine core you will be able to grunt every swear word known to mankind. Oops. So now we watch and we wait. Knowing me as you do, you understand how great I am at being patient… not so much. You on the other hand, Malachi, are the most patient, willing and sweetest boy that God could have given me. I know you are scared to start school as you are worried that you might have to pass “crazy gas” and there may not be a designated area for this. I know you are starting to understand that you might be a bit more prone to these things then other kids but what I want you to know more than anything is that you are also more likely to succeed and overcome. In a weird way, Hirschsprung’s has been your teacher also. It has shaped you and gave you a strength and perspective that I admire so very much. If love and laughter are truly the best medicine then that would explain how in spite of all the setbacks you continue to grow so strong. I am not sure what our path is, you may require a secondary pull through surgery, in which case I have no doubt you will be better than fine as that’s who you are (In the event of a secondary pull through, I will likely hit an all new level of crazy obsessiveness- thankfully I never promised sanity). This journey has been nothing short of challenging and you and your sister have taught me so much and made me so much stronger. It is true the words I whisper in your ear every morning… I wished for you my entire life. You are perfect.
It has been a while since my last blog entry. I want to say that so much has happened since we last connected but the truth is NOTHING has really happened. In spite of my efforts and undeniable sense of humor regarding it all, we are at a standstill. Like in an old western movie standoff with two cowboys facing one another about to draw their guns for an epic shootout… Only I am the retired showgirl saddled up next to the bar in the town saloon, half in the bag and totally unimpressed. Lol Ok that might be a bit of an exaggeration as I rarely drink but you got the point?! Last fall we tried another round of Botox as it seems to help, it was as it always is likely more traumatic for me then him. We arrive at the hospital, Malachi always with a brave face but scared. Meanwhile I am acting like a side show circus trying to be positive and keep Roo entertained. The usual protocol of pre-op, me insisting Doctor Wiseman pinky swear that he will be the only one doing the procedure, me harassing the anesthesiologist and their interns that ONLY the experienced doctor will put my son to sleep etc. I can only imagine how crazy I come across but my caring about optics went out the window long ago. Then, that moment I have come to really really HATE…when he walks down the corridor holding the hand of the nurse to the operating room. I watch smiling like an idiot until he turns the corner then like all rational mothers do burst in to tears inconsolably. Thankfully I have already established myself as crazy so the expectations are not set high. Phew. Then the phone rings…. (Hate that phone) and I can go in to recovery. It is not hard to find Malachi as he would be the one with the face like an angel and swearing like a sailor. Needless to say he does not awake from this procedure in the best of moods. In this moment I am really regretting swearing at my dog as it’s not that becoming when a 5 year old keeps yelling out the word shit. Insert sheepish face here. While in the operating room last time DR Wiseman did another biopsy of Malachi’s colon to see if on the unlikely chance there is still too much colon that was aganglionic. Feeling confident that all was going to come back as normal I really did not think much of it. It is my nature to chase unicorns and rainbows so when I got the call that his biopsy results came back and they were not what we had hoped for I was a complete mess. As though the rug had been pulled out from underneath me type of mess. Does this mean another pull through? How can we possibly be going backwards? Malachi functions fairly well most days, the question still remains what should he be doing by now? He still poops in his sleep but I really don’t care, in fact I welcome it. As long as he is pooping. Potty time is a never ending battle but that too has become our norm. He still gets distended and holds….again our norm. He is a great weight and growing, he isn’t really in pain often. He is otherwise healthy. The only new issue that has arisen is his awareness of his issues and his fear of being in public places ad having an accident or being gassy. He does not want to sleep on the plane in case he farts, he does not want to go to school in case he needs to fart. So we try to normalize it as much as possible… Honestly I have become the Adam Sandler of bathroom humor. Who would have thought? So now we wait until his next trip to the operating room for a second more in depth biopsy. This will determine our next course of action. In the meantime the wheels on this crazy HD bus continue to go round and round… all the while I am so very smitten with my son. At the end of the day I would not change a thing about him. He is all I ever wished for.