When my daughter Lily became critically ill at 6 months old I had no idea how much help I was going to need. People would say things like "If you need anything let us know" over and over again. I would thank them for their kindness but didn't really ask for help. The problem was twofold. First, I didn't know what I needed. All I knew was my baby was really sick and I didn't want to lose her. I had grown accustom, in this life, to working hard for what I needed and wanted and relied very little on the kindness of others. Second, I didn't know how to ask because of that pride and inexperience with being vulnerable to ask for help. So, here I am attempting to compile a list of things that some people did that were amazing and some ideas that we wish we could have had offered or would have been able to ask for.
1. MONEY: Yes, of course we needed money. In addition to racking up a $4,000 bill the first week of Lily's illness, my husband and I also missed nine days of work. When we went to Cleveland, Ohio for her brain surgeries we were gone for 5 weeks and were not working (though my company paid me some money). In addition to the medical costs and the money we lost, we were so busy running from appointment to appointment or were exhausted out of our minds that we ate out every meal. Sometimes, though, if the baby and family qualify for Social Security, donating money to them can mess up their benefits. When you are on Social Security Disability, your savings and bank account cannot exceed $2,000 so check with them before you set up a bank account in their name. Finally, don't make them ask for it. They need it so do a fundraiser or donate.
We actually were really well taken care of on the money front. After we got over the initial humiliation of having to take money we were grateful it was there. We really needed every penny we got and forever grateful to those that helped us with a donation.
2. FOOD: On that same note, we needed to be fed. We had a couple of people, my neighbor Patty, one of my real estate clients from when I sold advertising at the journal, brought us meals at the very beginning. I realize now that we needed someone to prepare us at least one home cooked meal a day. It wasn't until we stayed in the Ronald McDonald's House in Cleveland that we realized how nurturing and healing it was for people to cook for us. We were barely able to care for ourselves during that time.
When my friend Cecilia faced an insurmountable illness of her husband, her friend Sarah jumped into action and created a "doodle" (www.doodle.com) and sent it out on Facebook for people to sign up to cook for Cecilia's Family. For a couple of months, people signed up and cooked according to some simple dietary guidelines. Today I try to over cook a couple of meals a month by a couple of servings so I can freeze some in case one of my friends or family need to be fed. Its important. If you do nothing else, do this.
3. LET THEM TALK: No matter how uncomfortable it makes you feel they need to talk. The greatest frustration for me is the finite amount of time that I felt afforded by friends and family to talk about this profound experience we had. I think that most people cannot imagine and cannot relate so they don't even try. The people who were my saviors during Lily's illness were the ones who asked questions about what was happening, the ones who acknowledge how much the whole thing just sucked, and the ones that let me say the really dark stuff. I never knew I was strong enough and being told that I was didn't bring me any comfort. I knew she was strong so I set my sights on helping her carry this great load. And my heart was so broken and still is in many ways and the people who don't make me lie about that to make them more comfortable are my true friends.
4. DON'T: Please don't tell them that God only give the heavy loads to the strong horses (Lily was the strong horse, not me) , God only gives you what you can handle (he gives you what HE can handle) , think positive (what if I don't want to? does that make me a bad person?), you are sure it will all be fine (you don't know that), compare sick babies to your sick pet (no matter how much you feel you love your pet), say :"I know it is not the same but _____" (if its not the same, don't try to compare). Again, this is stuff that made me thank you for making yourself feel more comfortable but didn't help me at all. And most importantly, DON'T OFFER TO HELP OR DO ANYTHING IF YOU ARE NOT GOING TO DO IT WHEN THEY MUSTER THE COURAGE TO ASK FOR IT!
5. SOME TIPS FOR VISITING: If you are going to visit in the hospital bring flowers (unless the child is in the ICU), balloons, or a stuffed animal. Bring the parents a magazine, some bottled water, and a snack like crackers, mixed nuts, or candy. Please stay for only 15-30 minutes (they will have a ton of medical personnel to deal with) and unless offered, don't sit on the bed-they live on that bed and it may only be changed every few days. If you are not able to get to the hospital, every hospital has a gift shop that you can contact through the hospital operator. You can order flowers, balloons, food, and so forth over the phone and pay with credit card. The gift shop is always very helpful and for $10-$20 you can really brighten up a dark, dark time.
The biggest thing for our family was the influx of so many people when Lily was really sick-people we barely knew were calling and emailing. But, a month or so after she was rendered seizure free, our phones stopped ringing. I'm going to let you in on a secret: when a child has a serious illness, even if they get better, there is always a long period of reconstruction. For my family we have had years of near daily therapy and doctors appointments. Our child does not play like other children so for us to go to the park or zoo takes two people to keep her safe and frankly it makes us sad sometimes. We have become pretty isolated from the life other people live with their children. We need people to come to our house. We have worked hard to make our house fun and safe for all of us and we are most at ease here. At least call them regularly, Skype them, just let them know you have what it takes to hang in there and stay hooked up with them. They will remember your kindness forever.
6. CUT THEM SOME SLACK: A really important thing to remember is that the illness of a child is so overwhelming. I didn't sleep for almost three years because Lily was sick for the first year and then she was on seizure medications that interfered with her sleep for another year and then she was in a bad sleep habit for the next year so I was constantly on the edge of a total meltdown. I can't tell you how many times I wondered in horror if that stop light I just went through was green or red. I was nothing close to the woman I wanted to be for those years. I was grouchy, had a hard time listening to other people talk and I was apt to some pretty extreme emotional swings (mostly crying). And, I was darker. Please remember the amount of stress and pain they are going through and try to extend them some extra grace. This small act will pay dividends in love and gratitude.
This is intended to help those of you who have not had experiences with this or are new to this experience. People are all different but for the most part I think these are pretty practical and realistic suggestions. Now, go call your friend.
1. MONEY: Yes, of course we needed money. In addition to racking up a $4,000 bill the first week of Lily's illness, my husband and I also missed nine days of work. When we went to Cleveland, Ohio for her brain surgeries we were gone for 5 weeks and were not working (though my company paid me some money). In addition to the medical costs and the money we lost, we were so busy running from appointment to appointment or were exhausted out of our minds that we ate out every meal. Sometimes, though, if the baby and family qualify for Social Security, donating money to them can mess up their benefits. When you are on Social Security Disability, your savings and bank account cannot exceed $2,000 so check with them before you set up a bank account in their name. Finally, don't make them ask for it. They need it so do a fundraiser or donate.
We actually were really well taken care of on the money front. After we got over the initial humiliation of having to take money we were grateful it was there. We really needed every penny we got and forever grateful to those that helped us with a donation.
2. FOOD: On that same note, we needed to be fed. We had a couple of people, my neighbor Patty, one of my real estate clients from when I sold advertising at the journal, brought us meals at the very beginning. I realize now that we needed someone to prepare us at least one home cooked meal a day. It wasn't until we stayed in the Ronald McDonald's House in Cleveland that we realized how nurturing and healing it was for people to cook for us. We were barely able to care for ourselves during that time.
When my friend Cecilia faced an insurmountable illness of her husband, her friend Sarah jumped into action and created a "doodle" (www.doodle.com) and sent it out on Facebook for people to sign up to cook for Cecilia's Family. For a couple of months, people signed up and cooked according to some simple dietary guidelines. Today I try to over cook a couple of meals a month by a couple of servings so I can freeze some in case one of my friends or family need to be fed. Its important. If you do nothing else, do this.
3. LET THEM TALK: No matter how uncomfortable it makes you feel they need to talk. The greatest frustration for me is the finite amount of time that I felt afforded by friends and family to talk about this profound experience we had. I think that most people cannot imagine and cannot relate so they don't even try. The people who were my saviors during Lily's illness were the ones who asked questions about what was happening, the ones who acknowledge how much the whole thing just sucked, and the ones that let me say the really dark stuff. I never knew I was strong enough and being told that I was didn't bring me any comfort. I knew she was strong so I set my sights on helping her carry this great load. And my heart was so broken and still is in many ways and the people who don't make me lie about that to make them more comfortable are my true friends.
4. DON'T: Please don't tell them that God only give the heavy loads to the strong horses (Lily was the strong horse, not me) , God only gives you what you can handle (he gives you what HE can handle) , think positive (what if I don't want to? does that make me a bad person?), you are sure it will all be fine (you don't know that), compare sick babies to your sick pet (no matter how much you feel you love your pet), say :"I know it is not the same but _____" (if its not the same, don't try to compare). Again, this is stuff that made me thank you for making yourself feel more comfortable but didn't help me at all. And most importantly, DON'T OFFER TO HELP OR DO ANYTHING IF YOU ARE NOT GOING TO DO IT WHEN THEY MUSTER THE COURAGE TO ASK FOR IT!
5. SOME TIPS FOR VISITING: If you are going to visit in the hospital bring flowers (unless the child is in the ICU), balloons, or a stuffed animal. Bring the parents a magazine, some bottled water, and a snack like crackers, mixed nuts, or candy. Please stay for only 15-30 minutes (they will have a ton of medical personnel to deal with) and unless offered, don't sit on the bed-they live on that bed and it may only be changed every few days. If you are not able to get to the hospital, every hospital has a gift shop that you can contact through the hospital operator. You can order flowers, balloons, food, and so forth over the phone and pay with credit card. The gift shop is always very helpful and for $10-$20 you can really brighten up a dark, dark time.
The biggest thing for our family was the influx of so many people when Lily was really sick-people we barely knew were calling and emailing. But, a month or so after she was rendered seizure free, our phones stopped ringing. I'm going to let you in on a secret: when a child has a serious illness, even if they get better, there is always a long period of reconstruction. For my family we have had years of near daily therapy and doctors appointments. Our child does not play like other children so for us to go to the park or zoo takes two people to keep her safe and frankly it makes us sad sometimes. We have become pretty isolated from the life other people live with their children. We need people to come to our house. We have worked hard to make our house fun and safe for all of us and we are most at ease here. At least call them regularly, Skype them, just let them know you have what it takes to hang in there and stay hooked up with them. They will remember your kindness forever.
6. CUT THEM SOME SLACK: A really important thing to remember is that the illness of a child is so overwhelming. I didn't sleep for almost three years because Lily was sick for the first year and then she was on seizure medications that interfered with her sleep for another year and then she was in a bad sleep habit for the next year so I was constantly on the edge of a total meltdown. I can't tell you how many times I wondered in horror if that stop light I just went through was green or red. I was nothing close to the woman I wanted to be for those years. I was grouchy, had a hard time listening to other people talk and I was apt to some pretty extreme emotional swings (mostly crying). And, I was darker. Please remember the amount of stress and pain they are going through and try to extend them some extra grace. This small act will pay dividends in love and gratitude.
This is intended to help those of you who have not had experiences with this or are new to this experience. People are all different but for the most part I think these are pretty practical and realistic suggestions. Now, go call your friend.
Comments
Post a Comment