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