I've found that I'm a member of a
club that seems an odd thing to elicit pride: the "clubfeet moms" club,
the "moms of kids with Down syndrome" club, the "cancer kid moms" club,
the "moms who have been there" club. I'm a part of that club for Eli's
clubfeet, Ruby's Down syndrome, and, now, Ruby's leukemia.
In the past ten years, I've received messages from parents who are struggling with their baby's casts, or from a mom who is trying to figure out how to make the brace work in daily activities, or from an acquaintance or friend who knows someone who just received a T21 diagnosis. Or more recently, from someone who knows someone else with a young child's cancer diagnosis. Every one from close friends to internet acquaintances have come to me with questions, often asking if their friend can message me, or if there’s anything they can say to their friend and what should they do to help. And for every question that has been asked of me, I have asled ten of someone else. That's the way this circle of life seems to work.
Although these interactions sometimes make me feel like people see me as an odd 'take my bad news and tell me why it's not bad' self-helper, I never see them as a bother. In fact, I consider the fact they come to me as a compliment of sorts. It isn’t a compliment I necessarily wanted to receive, at least when it comes to leukemia, since I sometimes wish I knew nothing of the subject, but it’s one I accept humbly. The people who reach out to me trust me enough with their hearts and emotions to invite me into their private lives. And I get it. When all of our diagnoses were new, I wanted, needed someone to talk to also...someone who had gone before me and could tell me that things would be alright. Someone who wouldn't run away if/when I dissolved into tears. Someone that had gone through what we are facing and could give me the real deal. Someone who wouldn't be shocked by some of my new and possibly offensive questions and statements. Someone who wouldn't sugar coat things, but who also wouldn't hit me with difficult to process statistics and medical facts.
And then there is the part of this role that helps me relive the initial diagnosis. The part that lets me redeem my early moments in the club(s), especially when it comes to Ruby's Down syndrome. When I talk to parents who have just received the news while pregnant, or who are struggling with the early days of a little baby and what feels like a big diagnosis, I see who I was when Ruby was born. I see the fear, the grief, the confusion... It helps remind me how far Ruby has taken me and how much she's grown me. And I remember how alone I felt in those first few weeks, before we told everyone. How, even when we told friends and they were amazing and loving and supportive, they were still on the outside and I desperately needed someone else on the inside with me. I needed someone to say, "I know. I understand. I really do get it because I've been there and I'm here with you now."
When it comes to the leukemia especially, that reliving part also helps remind us how far down the road we are. How many procedures and chemo treatments and transfusions and hospital stays are behind us. I happen to think that is encouraging both for me and the parent I'm talking to.
In the past ten years, I've received messages from parents who are struggling with their baby's casts, or from a mom who is trying to figure out how to make the brace work in daily activities, or from an acquaintance or friend who knows someone who just received a T21 diagnosis. Or more recently, from someone who knows someone else with a young child's cancer diagnosis. Every one from close friends to internet acquaintances have come to me with questions, often asking if their friend can message me, or if there’s anything they can say to their friend and what should they do to help. And for every question that has been asked of me, I have asled ten of someone else. That's the way this circle of life seems to work.
Although these interactions sometimes make me feel like people see me as an odd 'take my bad news and tell me why it's not bad' self-helper, I never see them as a bother. In fact, I consider the fact they come to me as a compliment of sorts. It isn’t a compliment I necessarily wanted to receive, at least when it comes to leukemia, since I sometimes wish I knew nothing of the subject, but it’s one I accept humbly. The people who reach out to me trust me enough with their hearts and emotions to invite me into their private lives. And I get it. When all of our diagnoses were new, I wanted, needed someone to talk to also...someone who had gone before me and could tell me that things would be alright. Someone who wouldn't run away if/when I dissolved into tears. Someone that had gone through what we are facing and could give me the real deal. Someone who wouldn't be shocked by some of my new and possibly offensive questions and statements. Someone who wouldn't sugar coat things, but who also wouldn't hit me with difficult to process statistics and medical facts.
And then there is the part of this role that helps me relive the initial diagnosis. The part that lets me redeem my early moments in the club(s), especially when it comes to Ruby's Down syndrome. When I talk to parents who have just received the news while pregnant, or who are struggling with the early days of a little baby and what feels like a big diagnosis, I see who I was when Ruby was born. I see the fear, the grief, the confusion... It helps remind me how far Ruby has taken me and how much she's grown me. And I remember how alone I felt in those first few weeks, before we told everyone. How, even when we told friends and they were amazing and loving and supportive, they were still on the outside and I desperately needed someone else on the inside with me. I needed someone to say, "I know. I understand. I really do get it because I've been there and I'm here with you now."
When it comes to the leukemia especially, that reliving part also helps remind us how far down the road we are. How many procedures and chemo treatments and transfusions and hospital stays are behind us. I happen to think that is encouraging both for me and the parent I'm talking to.
One area most of us struggle with in this role is how to help, really help,
someone who is going through the chemo. When I don't know someone well
enough to stay with their child, or coordinate a meal calendar for their
friends and family, the only thing I can do is offer advice of little
things that helped me. My hope is that they can hopefully unload that
information on the close friend or family member who is most likely to
help oversee things for them. We are so unbelievably fortunate to have
friends and family who rallied around us to take care of the older kids
and get meals and do our laundry and and and...I would say having
someone (or a few someones) to coordinate all of that for us was the
single biggest thing that helped take some of the stress out of
processing the diagnosis and plan for hospital stays for multiple weeks
at a time.
I’ve
had short, single-serving conversations with
people who had a question about chemo or a test. I’ve talked to people
for hours just about nurses or hospitals or hospital stays. and I've
typed pages back and forth to moms who have gone before me and those
who are just starting out. I will give advice in one email only to turn
around and text a more seasoned mom for advice or a pep talk for Ruby's
next step.
All of this goes both ways, since we need each other. SO much our journey is about others. We aren’t alone in our bubble of diagnoses. We’re part of a community where we all need someone. I learned very early on, through the kindness of other parents, that it’s important to take our own struggle and turn it into strength for someone else. I am so grateful to be that strength for other parents, even if just for a moment of time. No matter how many days or weeks pass by, I will never forget the fear I felt during different moments of Eli's early months, Ruby's first days, and Ruby's third year of life so far. I can't forget the tears I shed during moments of despair. And I hope I never do. Those feelings are what motivate me to comfort others past those tears and fears and back into the joy they felt before their changing moment. Those feelings are what motivate me to help others find their new normal.
All of this goes both ways, since we need each other. SO much our journey is about others. We aren’t alone in our bubble of diagnoses. We’re part of a community where we all need someone. I learned very early on, through the kindness of other parents, that it’s important to take our own struggle and turn it into strength for someone else. I am so grateful to be that strength for other parents, even if just for a moment of time. No matter how many days or weeks pass by, I will never forget the fear I felt during different moments of Eli's early months, Ruby's first days, and Ruby's third year of life so far. I can't forget the tears I shed during moments of despair. And I hope I never do. Those feelings are what motivate me to comfort others past those tears and fears and back into the joy they felt before their changing moment. Those feelings are what motivate me to help others find their new normal.
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