Thursday, February 17, 2011

Awareness day 16 ~ What can you do?

When I was visiting off air with Mr. Fabry the other day, one of the things he wanted to talk about was 'What can the folks in the pew do?' God had other plans for the program though, and we never got that far.
It's something I had already been giving some thought to, so I thought that I would address it here as part of CHD Awareness month. It is difficult to know how to help someone when they are going through trauma. I know in the past, I have felt at a loss as to how to help. We have also told folks to give us a call if they needed anything ~ and we meant it. However, to expect someone who is dealing with traumatic issues to be the one to reach out...often we don't even *know* what we need. This post is written on the premise that you should not expect much of anything from the family in crisis. They are *in crisis*, so they just need to be ministered to.

So, here are some suggestions. These certainly apply to families dealing with heart defects, but would also apply to families dealing with cancer, death, downs syndrome, or any other defect or illness requiring hospital stays (or not, but I am including some hospital specific ideas).

  • Be there. Call, email, send a card, physically show up. Your presence means more than you can imagine. When Jethro was just days old, two of my friends showed up at the NICU with a basket full of china, tea and goodies. What a refreshing time that was. It meant a great deal. Days spent in the hospital get LOOOONNNGGG. You might want to call ahead, just to make sure they aren't taking a needed break from the hospital, or at least the room, but I was always so glad to see a visitor! I wish there would have been more. Even if you can only stay a few minutes, don't underestimate the value of your visit. This doesn't just apply to when someone is in the hospital. A chronic or catastrophic illness by nature creates a feeling of isolation. Your existence is travel, Dr. appts, and home. Maybe, if it's cancer, they can't have company, but you can still have contact and let them know that you are thinking of them. Don't assume they know. Don't expect someone who is dealing with hospitalizations, surgeries, learning new routines, dispensing meds, traveling back and forth to Dr. appts, on top of whatever they had going on before to make the call. They are likely thinking of you, they would probably have time to talk, but to expect them to initiate contact when their world has been a little impractical ~ they're just trying to make it through the day remembering everything they *have* to do.
  • On the day of a surgery, if you cannot physically be there; again, call, send an email, or if you're both on FaceBook, send a FB message letting them know that you're thinking of them and praying for them. If you have never turned your infant or child over to a surgeon for major surgery, I can't even explain to you what it's like. It's definitely an, "I HAVE to trust God" moment. With Open Heart Surgery, you know that they are going to be stopping your child's heart, putting them on bypass, etc. To have support on that day is invaluable. But don't expect them to ask you to be there. I know folks are busy, I know they have their own lives to live. I'm not going to impose on them by asking ~ I was sure thankful for my dear friend who came and sat with me the day of Jethro's Glenn. She asked me ahead of time if I would like her to be there, giving me the freedom to say "yes!", and know that it wasn't an imposition.
  • Provide meals. This may seem like a no brainer, however, they may be needed later than you would think. Jethro was in the hospital for 5 1/2 weeks. Our wonderful church family provided meals for my Mom (who had the rest of our children), so she didn't have to cook for so many extra mouths. They offered when we got home, but I had been away from my family for well over a month. I just wanted some semblance of cook and do laundry, etc. A couple weeks down the road, when I was overwhelmed with the new "routine", and multiple trips to town (an hour away) every week, meals would have been greatly welcomed! By that point, no one was offering, and I just didn't ask; we just struggled along. This is also VERY applicable when there is a death in the family ~ especially if that death is a child (no matter how old). Folks are great about providing meals right to start with and that is wonderful. But, if you have lost a child, you might really appreciate a meal months down the road when the rest of the world has continued moving forward, and you are still drowning in grief.
  • When someone is in the hospital, if you can afford to give them even a small monetary gift, it is so appreciated. Our hospital is great about providing meal tickets for parents of children in the NICU or PICU, however, not all families are provided those, and they do have a daily limit. And honestly, if you are spending an extended amount of time in the hospital, you are going to want to get food from somewhere else. :-P Hospital food gets old, FAST. Even if they can do the meals on meal tickets, the little extras, like vending machines or coffee add up quickly.
  • Along that line, taking them a fruit basket so that they have healthy munchies, or giving them a coffee wonderful and appreciated. Our hospital has a local coffee company that has set up a couple or three different coffee bars within the hospital compound. I loved getting Thomas Hammer gift cards! If they are not in the hospital, but making a lot of trips to the Dr., you might give them a gift card for gas...I don't even want to think about how much we've spent on gas over the past year! Having someone in the family with an illness can add so many unexpected expenses, it's hard to even list them all.
  • If they have other children at home, then bringing the children up to the hospital is great. Don't spend a lot of time telling mom and dad how much the other kids need them. They know that. All you are doing is creating unnecessary guilt ~ adding to the guilt they are already feeling for not being at home. Even a sedated newborn NEEDS their Mama and Daddy there. They need someone to advocate for them, and to keep track of what is being done. As much as we don't like to think about it or consider it, mistakes happen...and often, it's Mom or Dad's sharp eye that catches it before it's too late. They need to be with their infant. If you have never had a child in the hospital, it's hard to understand. I knew my other children needed me, but I also knew that they were surrounded by family and friends that loved them and were caring well for them. Jethro needed me to be there watching over him. Giving support to the parents, and reinforcing to the kids that they are only away because they have to be, not because they want to be, that is a gift. We were overjoyed when someone would bring the other children up to visit, and wished it could have happened more often ~ but once again, not something I felt comfortable asking for because folks were already doing so much to help.
  • Not everyone has this ability, but some folks can just observe another's life and know what needs to be done. This can be a blessing for a family in crisis. As I mentioned earlier, it can be hard to know what is needed. But showing up unexpectedly with a meal, or offering to drive to a Dr appt., or a myriad of other things, without being asked. These are truly gifts to the family.

Families going through trauma need a lot of support. They may not be able to reciprocate much, if at all. Depending on what is going on, they may have all they can do just to stay afloat mentally, emotionally and even physically. That doesn't mean that down the road things aren't going to be more stable and the relationship will get back to 'normal'. Honestly, if folks didn't make the effort to at least stay in contact with me during the worst of our last year, by the time things settled down and I could catch my breath and think about something besides Jethro and the rest of the family's needs, I figured that they were gone. And I have so much on my plate, I am not pursuing relationships with people who aren't interested. It's fine. We move on. God is sovereign, He knows what is best and I trust that.

I know that I have asked you to step up and take the initiative. To be giving and self-sacrificing, but isn't that what God asks us to do? Aren't we to step in beside those who are hurting and do what we can to ease their burden? I know that I have failed to do that in the past ~ mostly because I just didn't know how to help. I just didn't understand. I am not fussing about how things were done for us ~ we were very blessed! God has provided us with an outstanding, loving church family and I am extremely thankful for them and all the support they have given us. They have truly been the hands and feet of Jesus to us this past year. I did want to share from a Mama's perspective, what is helpful...and a little of what is not. Ultimately, *ask*. But don't ask in a general, what do you need, sort of way. Ask specific questions. "Do you want the kids brought up?" "Do you need x, y, or z?" When your brain is overwhelmed with tons of information and emotions are running high, and you are exhausted, you can't necessarily answer a general question, but specifics can be easier.

May the Lord bless you as you seek to come alongside those in your life who are hurting and needy.


  1. Tracy, this is an excellent post. I think sometimes people stay away for a while because they just don't know what to do, so these suggestions are wonderful.

  2. This is an excellent post! It's wonderful to have these insights from someone "on the inside".

    I went back and looked at some older posts b/c I am behind in what is going on with you, and I saw that you found out that Jethro has scoliosis. I have two daughters who have scoliosis, and they each wear a brace. Now, they are teens and Jethro is a baby, but I wanted to recommend the Spinecor brace to you if no one ends up telling you about it. Here is the link to the website about it:
    It is not a hard brace and thus infinitely more comfortable than a traditional hard brace such as the Milwaukee. It is appropriate for all ages. I'll just let you read the rest about it on the website. :)

    God bless you! And happy birthday to Jethro!