Here is a quick update on Daniel before I begin the main focus of this post. Today is day 11 after the Norwood. Yesterday he was extubated. Today he is getting his right atrial line removed from his heart and his chest tube. He is now only on two IV medications, and they’re going down on those each day. The hope is he can have his arterial IV line out of his arm by the end of the week as he changes to oral medications. Daniel is doing wonderfully, and it is a joy to see the progress each day. It has been a long, hard road, and we are only just beginning. He will have another open heart surgery in four to six months, and multiple heart cath procedures, and his (hopefully) last open heart when he is 2-4 years old.
What is more difficult– acknowledging you need help or accepting help once you finally do acknowledge it?
Helping those in need can take many forms, and we are so thankful for all of you who are walking this journey with us. Thank you to all of you who have called and texted. Thank you to everyone who has come to visit. Thank you all for praying for us. We have felt incredibly blessed by so many people. I feel so thankful for my parents who have been constantly caring for our children for the last month, my generous brother and sister-in-law who have looked out for us every step of the way, my wonderful aunt Pam and uncle Elmer who have given us free access to their RV indefinitely. I have felt so rich in so many other ways that it didn’t occur to me that I really do need help.
I realized our need for help this weekend. My mom, Brian, the kids, and I went to church at St. Timothy Lutheran Church. It was a wonderful experience! We went to Bible class at 9:30 a.m., and then we went to the contemporary worship service beginning at 10:45.
We are very connected to this congregation. About two months ago, two ladies from this church took me out to lunch. They heard about my situation through a lady who had gone to the LWML convention, and she had heard about it from Pastor Heckmann. These two ladies and I had a fabulous lunch, and halfway through one of them asked me, “We have a new member from your area. Do you know Jeremy Munz?” I laughed. Jeremy Munz is practically my brother. Then I found out later that the pastor at their church was my mom and dad’s pastor at Immanuel Lutheran Church over thirty years ago. What a small world!
Anyway, these people have had us on their prayer list for a couple of months. The lesson during Bible class was about the Israelites and how they struggled to trust in God through their trials and difficulties in the desert, even though they had seen all of God’s wonders as He brought them out of Egypt. I felt like I could completely understand the Israelites’ feelings– despite God’s continued blessings throughout my life, I struggled to trust in His plan through my pregnancy with Daniel, and now through all of the ups and downs of his care. I shared about our situation in Bible class, not realizing we had been on the prayer list.
What happened next was really awesome! So many people reached out to us, expressing support and going out of their way to make us feel welcome. I am so thankful I shared our story because it allowed for others to help bear our emotional burdens. After Bible class, Pastor Henze told me that he had had many people ask him how they can support us and ask if they can bring us food.
My first reaction (in my head) was whoa, whoa, whoa, we don’t need help! We are fine! But then I realized that, for the first time as a professional, I will not be teaching this year, so we are losing my added income. Not to mention we are having to pay rent, electricity, and water bills each month at the RV park. Not to mention we have to pay at least $13 per day in parking, and that is only if we don’t leave the garage. Not to mention eating. Not to mention all of our innumerable hospital bills associated with my pregnancy, Daniel’s surgeries, his recovery, and his continued care. Not to mention the gas. The list goes on and on and on. We are so not fine.
I replied to Pastor Henze, “Wow, thank you! That would be wonderful,” instead of my knee jerk reaction, which would have been to graciously refuse. It got me thinking. Why do we have such a hard time accepting help? Is it because we don’t realize we need it, or is it because we are too proud to admit it, even to ourselves? How wonderful would it be for us as Christians if we had people tell us clearly what they need and how we can support them?
One person who has been a wonderful support is my cousin Shonda. I have noticed that the people who are most willing to reach out are those who have gone through immense hardship in their own lives, and that certainly applies to her. Her daughter Sarah Kate was diagnosed after birth with a congenital heart defect called Tetralogy of Fallot. Sarah Kate had open heart surgery when she was four and a half months old. Then, a year after her daughter was born, Shonda’s husband Lee got in a car accident in which he was paralyzed from the neck down. The journey she and her family have been on for the last fourteen years is unfathomable.
She gave me some valuable advice a few weeks ago. (Actually, she has given me tons of amazing advice, and I have several forthcoming blog posts inspired by wisdom she has shared with me.) She told me to give myself some grace. I have been imagining my own dilemmas as if someone else was telling me about it. I imagine what I would say to someone else if they had my problem, and then I try to take my own advice. If someone else was in my position and asked if it would be appropriate for me to accept help, I would say, “Yes, of COURSE!”
I called Shonda this morning, told her that the topic of my blog today, and asked her if there was one moment when she realized she needed help. For her, there wasn’t really one moment; there were a thousand little moments where she had no other choice. When friends call and ask her to do something on the spur of the moment, she has to politely decline. She can’t just run to the store because she is the primary caregiver for her husband. If you knew Shonda, you would see a delightful woman who never complains and who is willing to do anything for a friend or family member in need. Over the last fourteen years, she has had to find a new normal and come to terms with it. She told me, “Staci, don’t try to do it all yourself. Don’t be afraid to accept help. People want to feel like they are supporting you, and they want to do their part. If you don’t allow them that, then you are taking way from them the blessing of helping others.”
I have had the opportunity to speak to many other parents here with children in the PICU. I was talking to one dad whose six-year-old son has kidney disease. His little boy has had to be on dialysis since he was born. He spent seven months in the NICU, and he has been in and out of the PICU his whole life. When he was younger, he had to be on 24/7 dialysis. The little boy is also blind. His dad is his sole parent; his mom left the picture a long time ago. Now the little boy is awaiting a kidney transplant. Another mom has a son with hydrocephalus, and many other problems in other organs. Her son is nine years old and will never walk or talk. She and her son were released to go home last week after over a month in the PICU, but they had to come back the very next day. Her son had multiple infections, and they thought he was going to die. Last week she thought she would be planning her son’s funeral, but now he has taken an upturn.
Both of these parents expressed the same thing– how lonely this journey is, how no one else can possibly understand what this is like, how terrifying it is to leave your child with someone else when you are their primary caregiver, and how difficult it is to accept emotional, physical, and financial help from others. It is a bizarre feeling to simultaneously need people to talk to but to be too exhausted and/or drained to explain or engage. There are so many people suffering and struggling, too overwhelmed or ashamed to ask for help.
When I was reading my Chronological Life Application Study Bible last week, I was reading about the feeding of the 5,000 in which Jesus took five loaves and two fish and fed a multitude. The note for Mark 6:37-42 says the following, “Why did Jesus bother to feed these people? He could just as easily have sent them on their way. But Jesus does not ignore needs. He is concerned with every aspect of our lives–the physical as well as the spiritual…For people who are desperately hungry, there is no better way for us to show God’s love than to help provide for their physical needs. As we work to bring wholeness to people’s lives, we must never ignore the fact that all of us have both physical and spiritual needs. It is impossible to minister effectively to the spiritual need without considering the physical need.” There are many ways you can support someone you know who is going through a tough time. When you have prayed for us, visited us, given us gifts, provided us with food and money, you have demonstrated God’s incredible love in a very clear way.
Based on conversations with many people, here are some suggestions for supporting those in need:
Listen. Don’t worry about having the right words to say. Chances are the person is so starved for human interaction that they will talk your ear off. Last week some friends came to visit, and I realized after they left that I had suffered diarrhea of the mouth. I had literally talked nonstop for thirty minutes. Just being there to listen, whether that is on the phone or in person, means the world.
Be present. I spoke to a young mom with a baby with a heart defect this morning. She is unmarried and is having to live at the Ronald McDonald house. She is so spent emotionally that she can’t bear to talk to anyone. She ignores calls and texts because she feels she has no more to give anyone. Her mom works all day and she feels it is unfair to ask her mom to come up there with her. Even when you might not have the words to say, just being present is such an amazing gift. Earlier this week when Daniel was so swollen and alarms were going off every two seconds, I had Brian come sit with me while he worked from the hospital. Just having him there with me was so comforting. Any time one person in a family is afflicted with a serious illness, the whole family is affected, and that is definitely true for our children. Calling and planning a playdate with the kids is a wonderful way to be present for them as they go through this difficult time. It is always best to have a specific date in mind, rather than say, “Call me if you ever want to bring the kids to play.” I sincerely appreciate the offer when people say that, but it is very unlikely that I or anyone else will ever feel comfortable calling and imposing.
Pray. The power of prayer is incredible. It is such an amazing comfort knowing so many people are lifting Daniel up in prayer. Texting/messaging/calling to let someone know that you and your church is praying is an amazing way to give.
Bring Food. It has been quite a while since Brian and I have enjoyed a home cooked meal. When the pastor at St. Timothy said people wanted to bring us food, it was one of those situations where I didn’t realize how much I missed it until he said it. The young mom I wrote about in number 2 has lived at this hospital for over a month and has eaten nothing but hospital food. She never leaves because it is too expensive to get a cab/uber, and she can’t eat in the Ronald McDonald house room. She is stuck in this unfathomable situation as a young mom with no other support. When offering to bring food, it is best to say something like, “I would like to bring you dinner on Tuesday night. Are you available then?” If you say something like, “Do you need anything? Please let me know how I can help,” people are more likely to politely decline. I have no idea why. I think it is because we have so very many needs, it seems impossible to figure out one particular way on the spur of the moment, and it seems like too much of an imposition to follow up. There is also always the fear that people are just being polite.
Financial Support. One of the biggest ways to help is through gift cards or cash. Gift cards to restaurants is really nice because then there is a reason to a) eat good food without having to go to the store and do dishes, and b) leave the hospital. Cash is really helpful because we have to pay for parking and other expenses. For those who live far away, the app Venmo is awesome. You can download the app and easily transfer money from your bank account to someone else’s. Paypal is also a good option, or an online gift card.
Volunteer. The Ronald McDonald house has been invaluable to me. When I need to get out of this hospital room, I go there and look out the windows. When I am needing a pick-me-up, I eat some kind of snack in there and drink a glass of lemonade. It has been the place I meet other parents with kids in the PICU, and it looks like a small apartment. For a few minutes, I can pretend I am not in the hospital. I know that I will give financially and volunteer when possible at this amazing organization in the future.
For those of you who feel compelled to give to us, please note that my church family is organizing some kind of benefit for us. I think the plan is to have it in October, and it will involve food. For those who want to give who live far away, we will set up a paypal account so you can still support it.
Please don’t feel like you have to give us money. It feels so awkward to include numbers 4 and 5 in this post, but I can’t exactly write about accepting help without being willing to accept help myself. We know not everyone is in a position to give financially, and we sincerely appreciate the prayers you have said on Daniel’s behalf.
This journey has been life changing for our whole family, but especially for me. I have not been very giving in the past. I am trying to change that by giving back through this blog. I hope to give voice to so many struggles, not just my own but of so many people I am now seeing for the first time. I am trying to be present for people like the young mom I referenced earlier. I have seen her several times, but I haven’t reached out until today. I was intimidated because we come from different worlds, but I had a realization today that she probably just needs someone to talk to. I am going to make it a point to get involved in my community and to instill in my children a love of serving others. I am going to try to remember that, no matter how bad I think my situation is, there are so many people who have much, much more difficult circumstances than my own. Most of all, I am going to share the ultimate reason for hope, the living water and “bread of life” (John 6:35), our Savior who freely gave his life for us, the reason I give.