Lately I’ve been receiving a bunch of emails from people facing difficult medical diagnosis’, either of their child or the child of a close friend or family member.
First, I’m deeply humbled that these people haven chosen to reach out to me (of all people) to seek advice. I mean, how do they know I’m not going to drop some tasteless joke or selfie on them? God bless their trusting hearts.
I thought it was time I wrote up a post to share the thoughts and advice I’ve been giving. I pray you’ll never need it, but I’m finding the need to bring comfort to parents facing a devastating, and usually surprising medical diagnosis is, unfortunately, all too common.
1. This seems obvious, but pray. Ask for a specific intention (a miraculous healing, positive lab results, to regain the ability to swallow, etc) and even for a specific saint. If they don’t have a specific saint, you can look it up yourself. Pray unceasingly. In my experience, I went through times when I was so angry at God, I couldn’t pray. During those dark times, I’m sure it was the prayers of my friends and family who carried me.
Ask for new intentions and follow-up on the old. You might learn that while things didn’t go exactly as planned, God’s presence was clearly felt. I’m a strong believer in little miracles.We were told Teddy would present SMA the same as Fulton, maybe a little better, maybe a little worse. Even though we didn’t get the big miracle of a total cure, Teddy is more than a little stronger and his first year of normal milestones provided so much healing for me.
2. Quietly listen. Don’t judge, don’t offer advice and don’t try to relate to how they’re feeling. Don’t. say. anything. And, if possible try not to cry. Just listen and be strong for them. Parents dealing with dire medical predictions are going through a wild range of emotions which are perfectly normal. Their feelings may seem extreme to you but I can say from experience that it is common. If you can provide a safe ear to confide in, you needn’t do anything else. If you are concerned, suggest professional counseling but don’t offer clichés or share stories to “help put their experiences in perspective.”
After Fulton’s diagnosis, many people I talked to would get visibly upset when I explained the reality of his diagnosis. I felt the need to be strong for them, and bottled up my own feelings of sadness. I started helping others deal with the trauma of my son’s disease rather than relying on them to help me. Needless to say, I would eventually break down, usually to my husband but sometimes to a couple of my closest friends who even tolerated the dark humor I relied on in those early days to get me through the pain and uncertainty. Those friends never said “God doesn’t give you more than you can handle.” or “My child was hospitalized for an allergic reaction once so I understand what you’re going through.” Some of the kindest and most well-meaning people said things that hurt me the deepest. Unless you are a parent with a child facing the same diagnosis, less is definitely more.
3. Offer help in concrete ways, but don’t push charity on someone. Learning to humbly accept charity is part of having a child with a serious medical condition. It can be very difficult for hard-working, self-sufficient people to accept money for hospital bills, frozen meals and the like. If you ask them how you can be of service, they will most likely refuse and say they’re fine. Learn to offer specific gifts. Is there an upcoming appointment? Offer childcare for siblings or gas money if they need to travel. If the child needs to be hospitalized, organize meals or offer to sit with the child for a bit so Mom and Dad can take a break. See if there are routine medical supplies not covered by insurance that you can help purchase on a regular basis, or help them set up a wish list online for these items. If they need a major medical item or home renovations, offer to organize a fundraiser.
However, if they say no, respect that. Let them know you’re willing to help in any capacity. Eventually, they’ll need help. Keep offering and they will ask or take you up on your offer. But don’t offer if you’re not willing to step up. If you say you’ll organize a beef and beer, you’d better damn well hold up your end of the bargain.
4. Understand that even after the shock of the diagnosis goes away, and the family settles into their new normal, there will be tough times. Your friend may seem fine, and things may look great on the outside, but the hardship of the day-to-day is there. Your friend probably doesn’t want to be considered a saint or someone who is “doing it all”. He or she is probably still struggling in many ways. This is where continued prayer and listening is so important. It is an ongoing juggling act to care for a special needs child. Things never stay the same for long. Never assume your friend has it together.
5. This is more for the parents of special needs kids themselves: don’t forget about your marriage. (If you are Catholic, facing a genetic diagnosis and not so good at practicing NFP, this goes triple.) Caring for a child, or children with special needs, can suck up all your time. It is very easy to put all your time and energy into your disabled children so that your spouse gets completely neglected or only viewed as a fellow caretaker.
Friends, you can help by offering to babysit so Mom and Dad can get a night out, or if that’s not possible, surprise them with a gift card for a restaurant and some cash so they can find medically suitable help and get a break.
My saving grace through everything is my husband. I often say that I can handle all I’ve been given because I have Tony as my husband. I hesitate to call it a perfect marriage, but God knew what He was doing when he gave me such a wonderful man. I don’t know how anyone deals with a difficult medical diagnosis without a rock solid marriage. Please, make it a priority and friends, help your friends make time for one another.
6. Father Benedict Groeschel’s book, ‘Arise From Darkness’, for all the reasons I mentioned already.
7. I’ve also gotten a few emails regarding families facing a second major medical diagnosis. My heart goes out to you all especially. As a friend the worst thing you can say or imply is that it will somehow be easier because “you’ve been through it before”. A second diagnosis is worse in many ways because it feels like God is striking you with lighting twice. Why must two of my children suffer? If I was angry with God with one diagnosis, the second pushed me to the brink of disbelief. In some ways I still feel shaken by the second diagnosis more than the first, especially in regards to family planning. Parents in this situation instinctively know they will learn to live with it, because they already have, but it is so hard to see that silver lining. Continue to listen and see where you can offer help.
I realize this in no way is “quick takes’ but lastly I wanted to add a foot note for parents in my shoes, staring down the barrel of a scary medical diagnosis that promises to change their lives and all the dreams they had for their children in one fell swoop. One might not be ready to hear it now, but your life, or that of your child’s, doesn’t end with a diagnosis of SMA or anything remotely similar. You will feel joy, and laugh again. Your child, however long he or she is on this earth can understand all the love you pour into him or her. Hold your child close, smile together, look at the clouds, a book or a favorite stuffed animal. Enjoy it all, because they will too.
My boys understand they’re different, but they’re not unhappy. And I think it’s because we’re happy with who they are. My older three children have never seen anything wrong with their siblings. Fulton and Teddy can’t walk, but they can enjoy playing cars, or an iPad, as much as the next 3 or 6 year old boy. They don’t ask to do things they can’t do because they’re busy doing everything they can do. *I* wish they could walk, but they don’t give it much thought because they’re busy crashing their powerchairs into everything. My situation isn’t the same as everyone’s but my point is, don’t let your sadness or anger ruin your child’s life. Enjoy the here and now and don’t dwell on the what ifs. Be responsible and plan for the future but live in the present.
In conclusion, never trust that my quick takes will be short. Swing back to Jen’s for those who follow the rules. Do you have any additional questions I can answer? Leave them in the comments or shoot me a private email at kellymantoan(at) gmail (dot) com.