You see, we're all a community. The preemie community is quickly growing thanks to social media, and there is so much support that can be found now through Facebook and other web forums (I recommend Life After NICU and Graham's Foundation as a starting point on Facebook). I've been reminded of this community and what it has done for me so much this week. I was fortunate enough to get to talk to one of the new preemie parents a few days ago, and I can't tell you what a blessing that was for me. You see, when you know what kind of hell a friend is going through, you want to help more than anything. Unfortunately, there isn't a darn thing I can do to help this beautiful young lady other than listen, cry with her, and offer my own experiences and promise that it does get better. The days stop feeling so hopeless, the guilt becomes more manageable, and your baby does become more stable with time.. .and they DO come home! It may be 5.5 months (or longer!) and several surgeries later, but they do come home. So, I couldn't do anything to help her situation, but I could listen and more importantly, I could relate to the fear and anguish of the roller coaster. I want to wrap these new mommies up in my arms, hold their hands, and sit with them in their new world filled with alarms and medical jargon.
One of the unexpected challenges with the NICU journey and beyond is that you feel alienated and isolated from the rest of the world as you know it. Feeling so alone while we were in the hospital and even more so when she came home during RSV season was one of the hardest things to deal with, and, honestly, I still feel a little lost when I'm in a crowd. ..but it's getting better. It's amazing how much a text, a familiar face, or a Facebook message can brighten your day. Even in our dark days when it really didn't feel like those words helped, they did. I was just too numb to feel it, but I remember those words and moments with amazing clarity now.
Several people have asked me over the last few months what they can do for friends or relatives facing time in the NICU or caring for a fragile child, and so, I thought I would make a post out of those suggestions so I can reference it for myself, as well as for others who may want to do something to help. This list is certainly not inclusive, and it's really just a starting point, so feel free to chime in with your own suggestions. Obviously this list would work for parents with a sick child regardless of why or how long they're in the hospital, so even though I reference "NICU" be creative and know you can do this whether parents are in the hospital with a child facing an operation, an unexpected illness, etc.
Ways to Love Friends / Family in the NICU:
- Notes. I love handwritten notes, and I saved all of the ones I got while Addie was in the NICU. There's still something so personal about a handwritten note that I love. That being said, I received messages via Email, Facebook and text from friends and strangers that I have printed, saved, and revisit from time to time when I need a reminder of how many people are on Team Addie. Whatever method you prefer, a note to say "I care, I haven't forgotten you, and I'm praying" can make all the difference in a scared parent's day. The 5 seconds it takes you to type a quick note on FB can brighten someone's day. If you think of them, let them know. It doesn't have to be profound words of wisdom. ..just let them know you care and you haven't forgotten them.
-Gift cards. You really don't have to spend any money, but if you want to help provide food or a little pick me up, gift cards are a great way to do it. Many times you are stuck in the hospital, afraid to leave for more than a few moments, so a gift card can help with those inexpensive meals that become expensive when you're eating out 2 - 3 meals a day. Send them with a note (see above) or send anonymously. There is nothing more dear to this NICU mom's heart than free Starbucks (they have decaf if you are still pumping / breastfeeding!). There were weeks that food was unappealing, but my soy latte got me through the day after nights on end with no sleep. To those of you who sent me Starbucks.. .you saved a life (or more) by keeping me awake driving home more nights than I care to admit. If they're not coffee people - many are not - a gift card to a nearby ice cream shop or nail salon are great ideas, too. When life looks bleak, you need to find some happy anywhere you can. ..for me, that hint of happy came with a green Starbucks logo. Gas cards would be helpful, too, depending on how far away the hospital is from their home.
-Care packages. This is a great way to combine the previous two items with some inexpensive but thoughtful items that may make their lives easier. Travel size hand sanitizer, lotion, and Handiwipes are great - germs are the enemy (hence the hand sanitizer and hand wipes) and fighting that enemy comes at the expense of your hands, which are in constant need of some serious lotion. Travel size packets of Kleenex (tears come far too often, and the hospital grade tissues will get the job done, but good Kleenex' is a welcome luxury) are really nice, as well as a nail file / emory board (your nails break off as they get dry and brittle), and some yummy chapstick. A small notebook or journal is nice, along with a good pen, to keep notes, write letters, or just get all the thoughts that keep you up at night written down in hopes they don't come back. SNACKS - I loved the Special K meal bars for snacks or for days when I couldn't stomach "real" food. Packs of peanuts, peanut butter crackers, gum, Snickers, M&M's, granola bars of all shape, size and texture are all great ways to pack in some filling calories and keep hunger at bay. Crossword puzzles, fun magazines (People, In Style, etc), a good book or an Amazon gift card if they have a Kindle. ..
- Gifts for baby. The circumstances may be different, but there is still a newborn to be celebrated. Items that could be useful in the NICU and beyond are soft blankets that baby could lay on now and after they come home, books to read to baby, clothes (they can grow into them if they are as tiny as Addie - Gymboree, WalMart, Carter's, and Babies R Us are great places to find preemie sizes), or encouraging quotes that can become baby room decor.
-Food. See if they want meals dropped off at home. We were rarely home, but when friends brought food for a few weeks, I have to admit it was nice to go home and know that something not from a drive through was waiting on us. If they don't, don't be offended. They may literally never go home. In that case, offer to drop food off for them at the hospital. Make it clear that you don't want to stay for a visit or see their baby / child unless they want the company but that you would just like to drop off some food or, if they wanted to get out for a few minutes, take them to lunch at a nearby restaurant or even join them in the cafeteria. Follow their cues - some people want to get out of the hospital walls, others have to by pried away with a crowbar. If they aren't ready to get out or have the emotional strength to join you for a meal, don't be offended. They are probably afraid of breaking down or trying to figure out how to have a conversation that doesn't include rattling off medical jargon. I knew I would be terrible company, so I avoided going out to eat with amazing friends like the plague. I didn't know how to be around people, even understanding, kind, sympathetic friends, while we were in the hospital. I was honestly more comfortable at Addie's bedside or staring at strangers from a corner of the cafeteria than trying to figure out how to carry on a conversation. It wasn't anything personal against my friends. ..I was just lost, but knowing that they were there, that they cared, and that they would come visit or pick me up the minute I was ready meant more than they will ever know.
-Offer to run errands, clean their house, mow their yard, shovel snow, etc. Keeping up with a house or even every day life is the last thing on their minds. If they say "no, thank you" figure out a way to do something anyway. We would never agree to let friends help, but when they insisted or just did it anyway, it was always a secret relief. These ways of helping out mean more than anything and really don't cost a thing except some of your time.
-Offer to visit or keep them company. Depending on how close you are to the parents, offer to visit them at the hospital or to come sit with them at the bedside if they are comfortable with that. I wasn't comfortable with a lot of visitors (see: Germs) coming in to see Addie, but when those who were closest to us offered to stop by to see us, we could extend the offer to come in and see Addie when we were comfortable with it. If they aren't comfortable with visits, don't be offended. It's such a difficult time, and there is a fine line between finding comfort from a best friend visiting and an acquaintance making you uncomfortable with repeated drop by's. It always meant a lot for those we were closest to to stop by for a visit and to share Addie with them without them being panicked by the NICU setting or her tiny size and appearance. Maybe they were scared or upset by it, but they hid it well, and it helped to not feel so abnormal and alone.
-Offer to help set up the nursery or to help them register. These tasks are overwhelming for any new parents, but they become even more daunting when your baby is in the NICU. Not only is the baby section overwhelming with options when you go to register, but you are surrounded by other, often very pregnant, soon to be mothers that are registering or shopping. ..and in all honesty, that's really hard when you've delivered too early. Facing this with a close friend makes it bearable and helps you get through the process even faster. Help putting nursery furniture together is a great excuse for husbands to spend some time together outside of work and the NICU and do something to help get ready for baby's homecoming.
-When they come home, send congrats, banners, balloons. Remember, these parents were cheated the "normal" experience we all dream of - the joyful exit from the hospital, mother wheeled out with balloons tied to her wheelchair, baby swaddled and in a beautiful going home outfit only to find a house with a "It's a Boy / Girl" across the door or staked in the yard and more balloons on the mailbox. This celebration means even more for NICU parents. You survived the war and are bringing home your very own tiny war hero. When you have a baby who spends months in the NICU, no one knows what to say. ..do we say "Sorry" or "Congrats". ..most don't say anything, and that's ok. But when they go home.. .it's time to celebrate (however, quietly). Dear, sweet friends put balloons on our mailbox, and that meant more than they could ever understand. So, if you know "Home" is coming up, offer to help clean the house one more time, drop off a banner, balloons, flowers, etc.. .anything to let them know you are celebrating with them.
I know that I'm leaving some ideas out, so I hate to end this, but there is no way to get everything into one post. So, as I said, use this as a jumping off point. I'm certainly not an expert, and everyone is an individual and responds to an intense situation like the hospitalization of a child differently, so, my biggest piece of advice is to take your cues from the parents. I can't emphasize this enough. Some people are more private, others are too scared to leave the bedside, and others can't handle being there as much as others. Be sensitive to their own needs. Remember, this is about them, not you. You want to help, not add guilt or stress.
No gesture is too small - from an Email from a stranger to a cup of coffee with a dear friend to sitting in the waiting room offering support during a surgery - it all matters, and it all culminates in helping your friends / family through the hardest moments of their lives. You are letting them know that they aren't forgotten, especially as time goes by and the newness wears off, and you are offering support in whatever way they can take it.
I am forever indebted to the people who carried my family through those long, terrifying days. I am hoping I can pay it forward by helping others and by helping those who haven't been there know what they can do to help, too.
One of the unexpected challenges with the NICU journey and beyond is that you feel alienated and isolated from the rest of the world as you know it. Feeling so alone while we were in the hospital and even more so when she came home during RSV season was one of the hardest things to deal with, and, honestly, I still feel a little lost when I'm in a crowd. ..but it's getting better. It's amazing how much a text, a familiar face, or a Facebook message can brighten your day. Even in our dark days when it really didn't feel like those words helped, they did. I was just too numb to feel it, but I remember those words and moments with amazing clarity now.
Several people have asked me over the last few months what they can do for friends or relatives facing time in the NICU or caring for a fragile child, and so, I thought I would make a post out of those suggestions so I can reference it for myself, as well as for others who may want to do something to help. This list is certainly not inclusive, and it's really just a starting point, so feel free to chime in with your own suggestions. Obviously this list would work for parents with a sick child regardless of why or how long they're in the hospital, so even though I reference "NICU" be creative and know you can do this whether parents are in the hospital with a child facing an operation, an unexpected illness, etc.
Ways to Love Friends / Family in the NICU:
- Notes. I love handwritten notes, and I saved all of the ones I got while Addie was in the NICU. There's still something so personal about a handwritten note that I love. That being said, I received messages via Email, Facebook and text from friends and strangers that I have printed, saved, and revisit from time to time when I need a reminder of how many people are on Team Addie. Whatever method you prefer, a note to say "I care, I haven't forgotten you, and I'm praying" can make all the difference in a scared parent's day. The 5 seconds it takes you to type a quick note on FB can brighten someone's day. If you think of them, let them know. It doesn't have to be profound words of wisdom. ..just let them know you care and you haven't forgotten them.
-Gift cards. You really don't have to spend any money, but if you want to help provide food or a little pick me up, gift cards are a great way to do it. Many times you are stuck in the hospital, afraid to leave for more than a few moments, so a gift card can help with those inexpensive meals that become expensive when you're eating out 2 - 3 meals a day. Send them with a note (see above) or send anonymously. There is nothing more dear to this NICU mom's heart than free Starbucks (they have decaf if you are still pumping / breastfeeding!). There were weeks that food was unappealing, but my soy latte got me through the day after nights on end with no sleep. To those of you who sent me Starbucks.. .you saved a life (or more) by keeping me awake driving home more nights than I care to admit. If they're not coffee people - many are not - a gift card to a nearby ice cream shop or nail salon are great ideas, too. When life looks bleak, you need to find some happy anywhere you can. ..for me, that hint of happy came with a green Starbucks logo. Gas cards would be helpful, too, depending on how far away the hospital is from their home.
-Care packages. This is a great way to combine the previous two items with some inexpensive but thoughtful items that may make their lives easier. Travel size hand sanitizer, lotion, and Handiwipes are great - germs are the enemy (hence the hand sanitizer and hand wipes) and fighting that enemy comes at the expense of your hands, which are in constant need of some serious lotion. Travel size packets of Kleenex (tears come far too often, and the hospital grade tissues will get the job done, but good Kleenex' is a welcome luxury) are really nice, as well as a nail file / emory board (your nails break off as they get dry and brittle), and some yummy chapstick. A small notebook or journal is nice, along with a good pen, to keep notes, write letters, or just get all the thoughts that keep you up at night written down in hopes they don't come back. SNACKS - I loved the Special K meal bars for snacks or for days when I couldn't stomach "real" food. Packs of peanuts, peanut butter crackers, gum, Snickers, M&M's, granola bars of all shape, size and texture are all great ways to pack in some filling calories and keep hunger at bay. Crossword puzzles, fun magazines (People, In Style, etc), a good book or an Amazon gift card if they have a Kindle. ..
- Gifts for baby. The circumstances may be different, but there is still a newborn to be celebrated. Items that could be useful in the NICU and beyond are soft blankets that baby could lay on now and after they come home, books to read to baby, clothes (they can grow into them if they are as tiny as Addie - Gymboree, WalMart, Carter's, and Babies R Us are great places to find preemie sizes), or encouraging quotes that can become baby room decor.
-Food. See if they want meals dropped off at home. We were rarely home, but when friends brought food for a few weeks, I have to admit it was nice to go home and know that something not from a drive through was waiting on us. If they don't, don't be offended. They may literally never go home. In that case, offer to drop food off for them at the hospital. Make it clear that you don't want to stay for a visit or see their baby / child unless they want the company but that you would just like to drop off some food or, if they wanted to get out for a few minutes, take them to lunch at a nearby restaurant or even join them in the cafeteria. Follow their cues - some people want to get out of the hospital walls, others have to by pried away with a crowbar. If they aren't ready to get out or have the emotional strength to join you for a meal, don't be offended. They are probably afraid of breaking down or trying to figure out how to have a conversation that doesn't include rattling off medical jargon. I knew I would be terrible company, so I avoided going out to eat with amazing friends like the plague. I didn't know how to be around people, even understanding, kind, sympathetic friends, while we were in the hospital. I was honestly more comfortable at Addie's bedside or staring at strangers from a corner of the cafeteria than trying to figure out how to carry on a conversation. It wasn't anything personal against my friends. ..I was just lost, but knowing that they were there, that they cared, and that they would come visit or pick me up the minute I was ready meant more than they will ever know.
-Offer to run errands, clean their house, mow their yard, shovel snow, etc. Keeping up with a house or even every day life is the last thing on their minds. If they say "no, thank you" figure out a way to do something anyway. We would never agree to let friends help, but when they insisted or just did it anyway, it was always a secret relief. These ways of helping out mean more than anything and really don't cost a thing except some of your time.
-Offer to visit or keep them company. Depending on how close you are to the parents, offer to visit them at the hospital or to come sit with them at the bedside if they are comfortable with that. I wasn't comfortable with a lot of visitors (see: Germs) coming in to see Addie, but when those who were closest to us offered to stop by to see us, we could extend the offer to come in and see Addie when we were comfortable with it. If they aren't comfortable with visits, don't be offended. It's such a difficult time, and there is a fine line between finding comfort from a best friend visiting and an acquaintance making you uncomfortable with repeated drop by's. It always meant a lot for those we were closest to to stop by for a visit and to share Addie with them without them being panicked by the NICU setting or her tiny size and appearance. Maybe they were scared or upset by it, but they hid it well, and it helped to not feel so abnormal and alone.
-Offer to help set up the nursery or to help them register. These tasks are overwhelming for any new parents, but they become even more daunting when your baby is in the NICU. Not only is the baby section overwhelming with options when you go to register, but you are surrounded by other, often very pregnant, soon to be mothers that are registering or shopping. ..and in all honesty, that's really hard when you've delivered too early. Facing this with a close friend makes it bearable and helps you get through the process even faster. Help putting nursery furniture together is a great excuse for husbands to spend some time together outside of work and the NICU and do something to help get ready for baby's homecoming.
-When they come home, send congrats, banners, balloons. Remember, these parents were cheated the "normal" experience we all dream of - the joyful exit from the hospital, mother wheeled out with balloons tied to her wheelchair, baby swaddled and in a beautiful going home outfit only to find a house with a "It's a Boy / Girl" across the door or staked in the yard and more balloons on the mailbox. This celebration means even more for NICU parents. You survived the war and are bringing home your very own tiny war hero. When you have a baby who spends months in the NICU, no one knows what to say. ..do we say "Sorry" or "Congrats". ..most don't say anything, and that's ok. But when they go home.. .it's time to celebrate (however, quietly). Dear, sweet friends put balloons on our mailbox, and that meant more than they could ever understand. So, if you know "Home" is coming up, offer to help clean the house one more time, drop off a banner, balloons, flowers, etc.. .anything to let them know you are celebrating with them.
I know that I'm leaving some ideas out, so I hate to end this, but there is no way to get everything into one post. So, as I said, use this as a jumping off point. I'm certainly not an expert, and everyone is an individual and responds to an intense situation like the hospitalization of a child differently, so, my biggest piece of advice is to take your cues from the parents. I can't emphasize this enough. Some people are more private, others are too scared to leave the bedside, and others can't handle being there as much as others. Be sensitive to their own needs. Remember, this is about them, not you. You want to help, not add guilt or stress.
No gesture is too small - from an Email from a stranger to a cup of coffee with a dear friend to sitting in the waiting room offering support during a surgery - it all matters, and it all culminates in helping your friends / family through the hardest moments of their lives. You are letting them know that they aren't forgotten, especially as time goes by and the newness wears off, and you are offering support in whatever way they can take it.
I am forever indebted to the people who carried my family through those long, terrifying days. I am hoping I can pay it forward by helping others and by helping those who haven't been there know what they can do to help, too.
I just love how you use your story to help others...I know you must touch more lives than you can imagine!
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