When You're the Parent of a Kid With a Disability, It's Hard to Accept Help
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I am also the mother of a child who is severely ill. She is one of approximately 100 people in the entire world with her rare disease. This brings on a whole new set of challenges for any parent, much less, a single mother. These challenges take the "normal" amount of giving related to parenthood and toss it into a whole other realm. One that takes you beyond what you ever thought imaginable to care for and keep your child alive, while simultaneously caring for a healthy child, all of their needs and working to support them both.
More often than not, I set my own needs aside. Necessity, lack of hours in the day and the guilt all play into this. Necessity arises because my children need me. One much more than most and in a capacity that can be overwhelming. Lack of hours in the days because mine often run 48 hours or longer without any kind of rest. Guilt plays in, primarily from my own desire to be the best mother I can be for my children. I am hard on myself. I'm constantly thinking "You could have done better," or "Don't be lazy; they need you." It's exhausting to say the least.
Now to circle back to what this post is actually about. As the mother of an extremely rare and very ill child, I am often asked by loving family and friends what they can do to help. Most of the time, I don't even know how to respond.
What do I really need?
A house set up for all of my daughter's unique needs with private space for me to try to relax that is not inhabited by all kinds of caregivers and people. A car set up for the equipment she needs. Stronger arms to lift my daughter. Round the click nursing staff. A house cleaner. Tens of thousands of dollars in medical bills to be paid. A trip to swim with the pigs in the Exumas.
More often than not, I set my own needs aside. Necessity, lack of hours in the day and the guilt all play into this. Necessity arises because my children need me. One much more than most and in a capacity that can be overwhelming. Lack of hours in the days because mine often run 48 hours or longer without any kind of rest. Guilt plays in, primarily from my own desire to be the best mother I can be for my children. I am hard on myself. I'm constantly thinking "You could have done better," or "Don't be lazy; they need you." It's exhausting to say the least.
Now to circle back to what this post is actually about. As the mother of an extremely rare and very ill child, I am often asked by loving family and friends what they can do to help. Most of the time, I don't even know how to respond.
What do I really need?
A house set up for all of my daughter's unique needs with private space for me to try to relax that is not inhabited by all kinds of caregivers and people. A car set up for the equipment she needs. Stronger arms to lift my daughter. Round the click nursing staff. A house cleaner. Tens of thousands of dollars in medical bills to be paid. A trip to swim with the pigs in the Exumas.
None of those things are something you can typically respond with when asked, "How can I help?" So, I generally respond with "I don't know," "Thank you for offering to help," or "I will let you know." I can't have just anyone come over to help with my all-night caregiving, or attend my daughter's specialist appointments for me, make life-altering decisions, fill out pages upon pages of paperwork, fight for services or schedule her many, many appointments. When your needs are so intensely large in nature, you just keep going and don't even know how to ask for or receive help.
Today I was humbled. I was contacted by one of my daughter's service providers and told that the local 4H group was providing a Thanksgiving meal to a local family and that they wanted it to go to my family. As I write this I am welling up, as this is not something I have experienced much of in the almost eight years of my daughter's life. My first instinct and my initial response was that of extreme shock, gratitude and then saying to give it to a family that is more deserving.
After I hung up, one of my daughter's caregivers asked me about the call. I explained. She immediately said for me to call back and accept the gift. She told me that I am deserving and that it is my turn. I called back and accepted the extremely thoughtful and generous gift. I am humbled by this act of kindness.
What I realized is that I am terrible at accepting gifts and generous acts of giving with the true intention of kindness. I was told wise words by a dear friend of mine:
Today I was humbled. I was contacted by one of my daughter's service providers and told that the local 4H group was providing a Thanksgiving meal to a local family and that they wanted it to go to my family. As I write this I am welling up, as this is not something I have experienced much of in the almost eight years of my daughter's life. My first instinct and my initial response was that of extreme shock, gratitude and then saying to give it to a family that is more deserving.
After I hung up, one of my daughter's caregivers asked me about the call. I explained. She immediately said for me to call back and accept the gift. She told me that I am deserving and that it is my turn. I called back and accepted the extremely thoughtful and generous gift. I am humbled by this act of kindness.
What I realized is that I am terrible at accepting gifts and generous acts of giving with the true intention of kindness. I was told wise words by a dear friend of mine:
"Normally your day-to-day state of being is pouring yourself out to others. Now that the tide has turned it feels weird. Give people the blessing of allowing them to take care of you."
I was the recipient of a big learning experience today. Mostly, that I need to open myself up to receiving and accepting the kindness and generosity of others that is given with pure intentions. What I do during my days can barely be comprehended by most, and I have a lot of growing to do in the area of accepting help. I write this in hopes of giving others who sit in a similar position as myself the ability to accept the kindness and generosity that is sent their way. To stop for a second or maybe 10 and look at the reality of what you are managing under extreme and incomprehensible circumstances, and most importantly to understand that you are deserving of kind acts of generosity from others.
I learned a valuable lesson today. The feelings I have when I am constantly giving is the same that others are feeling while attempting to give to me and my amazing little family. I am learning to put my initial responses aside and say, "thank you." This is very new, so I not yet mastered it, but I am working on it.
To all of you amazing people out there doing the extraordinary day in and day out, try and practice saying "thank you" and accepting kindness and generosity from others. It isn't just good for you, but for the person(s) doing the giving.
Get up. Dress up. Show up. Never give up, and keep moving forward.
Get up. Dress up. Show up. Never give up, and keep moving forward.
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