Creative title, huh? But since I intended to have this blog up long, long ago and have been sidetracked, it will have to do.
There have been a few instances since Aria died where I have been approached by someone looking for advice on how to help someone else going through similar things. I thought it would be helpful if I wrote about what we most appreciated from others, in order to spark some ideas. I know that my ideas NOW as far as what is helpful, compared to my ideas BEFORE, definitely do not line up! It definitely takes living through something like this to understand the specific difficulties that are associated with it.
Although everyone is going to be a little different on what specific show of support they need, I've broken the situation into 2 large chunks: Hospital Life, and Grieving Life. For us, we had 2 months of basically living at the hospital before Aria passed away. Our needs during that time were very different than our needs after. So I have tried to specify if there are ways to help that are better suited to one situation than the other.
Don't just say something like, "what can we do to help you?" Even though it is very well-meaning. Whenever I was asked that I would usually answer with a blank stare. Guys, I know the offer was genuine, it's just that you have to understand that when you're going through something like this, your brain is FRIED all the time. Especially when we were living the Hospital Life. . .I literally couldn't plan more than 24 hours in advance, because our schedule at the NICU changed every day based on what new tests they were running or what doctors wanted to talk to us or what visitors we had coming. It made it SO HARD to plan anything. Child care for my older son, meals, even being able to tell people for sure times that we would be at home.
Gifts: I loved and kept every single thing people gave us for Aria, both while she was alive and after she died. I keep them all in a dresser full of her momentos. We have lots of headbands, a couple bracelets, a few personalized blankets, small stuffed toys, a dress, drawings from several different children, even a little crocheted ladybug costume, and some other things. I just love that I have tangible items that I can say are hers, even if she never saw or touched them.
Equally important - the gifts that came for my son, both before and after Aria died. I think in these kinds of circumstances it is really easy to forget about any siblings and to focus only on the parents and child involved. But this was as difficult a time for our son as it was for the rest of us, and I just really appreciated whenever anyone thought to send him a little trinket. Especially during Hospital Life when I was away from him so much.
Throughout the whole process, both Hospital and Grieving Life, THE MOST IMPORTANT thing anyone could do was just to let me know they cared. This could be as simple as a text every couple days letting me know they were thinking about us or asking about the baby or sharing a way that our baby was inspiring them to be better. In our everyday busy life, I was just appreciative to have been a thought in someone's mind. It helped me feel like our baby mattered to more people than just us, which is HUGE as a parent! We spend their whole lives proudly showing them off, I wanted people to still care about my baby even if I couldn't physically show her off. This is still true even though she's in heaven now.
Related to that - make sure to mention the baby. No matter the diagnosis. It was always super awkward when people would ask repeatedly how I was doing, or my husband, or son. . .but they seemed terrified to mention the baby. This is more true after she died. I know it's really awkward for most people to mention the deceased, but it did hurt my feelings because I felt like they would rather she just be forgotten. Or maybe they didn't want to bring up painful memories. But what those people don't understand is that I already was thinking about her 24/7. Still do! You're not "reminding" me of anything, so when you mention my baby that just helps me know that you remember her too which is all I want.
As far as tangible gifts for parents goes - anything of course was truly welcomed and appreciated. There are two types of gifts that we received that were particularly helpful though: gift cards for cash or gas. I hesitate to even mention it because it sounds so blunt, but my feeling is that if you are going to spend money on someone, I might as well tell you what will absolutely get used. Restaurant gift cards are nice but we didn't get a chance to use them until months later when we had the luxury of flexible time again. But we did spend a LOT of money on food at the hospital cafeteria, so it was super nice to just swipe a VISA gift card. We also spent hundreds of dollars each month on gas so the couple of gas cards we got were used quickly (and thankfully they were for stations that were near us). That one I'm sure is not as important in some cases where the baby is very close, but where Aria's NICU was an hour away, we spent a. lot. of. time. driving. back and forth, sometimes several times each day depending on what was going on.
Play dates: I got so many offers of baby-sitting, and truly appreciated them. However, most of those offers stopped after Aria died. It makes sense - people knew how busy we were with Hospital Life, so they offered childcare, and then figured we didn't need it once we were no longer schedule-crazy after she died. However. This is actually backwards of what would have been helpful. Let me 'splain: During Hospital Life, if I was leaving Bennett with someone in the neighborhood it really needed to be for several hours to make it worth it since the NICU was so far. Drop him off, drive an hour, be in the NICU for 2 hours, drive an hour home to pick him up. And 2 hours in the NICU is practically nothing, although of course better than nothing. At any rate, asking a neighbor for a minimum of 4 hours is kind of a HUGE favor, and kind of risky because I never knew if I'd run into traffic on the way up or back, or if a doctor would drop by right as I was getting ready to head home, etc. I just always felt so bad if I ended up being late coming back. And not just for the neighbor, but for my Bennett boy. He turned 3 during Hospital Life and leaving him with a neighbor for 4 hours was just really long for him at that time, mostly because he had severe abandonment issues that took months to work through. At today's age where he could understand what was going on better it would be fine, but he was just too little back then and was happiest when I was at least in sight somewhere. He did much better when he was with family members who he knew well, but that was hard on me because they lived in the opposite direction so that meant my commuting time was doubled. The best child care during that time came from two angels who were able to offer regular child care for free. One was some old friends who we hadn't kept in touch with, but who reached out because they lived near my husband's work. We were able to come up with an arrangement where once a week I would drop Bennett off in the late afternoon and go to the NICU, and then my husband would pick him up a couple hours later on his way home. It was AWESOME. I got to spent the whole evening at the hospital totally stress-free knowing that Bennett was only away from his parents for a couple hours that day (on those days my husband would usually go up to the NICU in the early morning, just in case you were wondering). The other was my aunt who lived only about 20 minutes from the hospital! On the days where I didn't have any other help I could drop Bennett off there on my way up, spend 2-3 hours at the NICU, then go pick him up. He loved playing there with my little cousins and knew I wasn't far away so he was content to last a little longer without me. In Grieving Life, I was at home physically with my son all the time, but I was mentally/emotionally spent. This is where the playdate offers would have been most helpful, because I could have easily taken him somewhere in the neighborhood for a couple hours just to be able to have a little time to collect myself and recharge for the rest of the day taking care of him and all the household needs.
Meals: This one gets tricky. I don't believe I cooked at all while Aria was in the hospital. I just didn't have the time. I was sure sick of fast food and take-out by the end of those 2 months of Hospital Life. I knew I'd survive, but it really added to my stress to feel like my son was not getting the nutrition he needed as a toddler. As far as grocery shopping went, we only ever bought staples - milk, eggs, bread. You know what would have been great? If we had been stocked on easy-grab healthy foods. Both for parents and kids. Things like yummy granola bars, yogurts, fruit cups, Lunchables, non-messy fresh fruits and veggies, applesauce pouches, cup-o-noodles, microwave dinners. . .you get the idea. Anything that is easy to eat while in the car is a bonus since over half the time I only had time to eat while driving. Fresh meals or freezer meals that people brought over were great of course, but way more helpful during Grieving Life when our schedule was no longer as crazy. While Aria was in the hospital I didn't dare even start a crockpot, lest I burn the house down by staying at the hospital too long. And fresh meals were hard because as I've mentioned, I was never able to give people concrete times of when we would be home. But during the immediate grieving period those meals were so helpful and amazing, because we obviously were not in the mood for cooking for a long time afterward.
Flowers: Another kind of tricky one. LOVED having fresh flowers in the house to come home to at the end of long hospital days. HATED having fresh flowers in the house after Aria died because it was just so damn depressing watching more beautiful things slowly dying.
Biggest tip of all: Do something! Anything! Even if you don't know them! Even if it's just a quick text, FB message, note in their mailbox, etc. While I can't tell you specific names of people who just sent quick little notes of sympathy/support, I CAN tell you that it was little messages like those that helped me get through the day. Just to know that someone was thinking of us was huge, even if they weren't actually doing anything. The big shows of support, of course, were life-changing and amazing. But just having these tiny random messages from people throughout the day was equally amazing. They always seemed to come right when I was at a breaking point, and would help give me the energy to last a couple more hours. And they were often from people who I didn't usually talk to, or barely knew. It ALL makes a difference.
