Tips for Families New to the Medical Vortex

It’s overwhelming when you have a child diagnosed with something. For me, I just lived in a fog. At least three months. I don’t remember how we performed the day to day functions for our family. But we did. I wish the transition to having a special needs child was easier. Here’s what I’ve learned is helpful to know. It’s my “I Wish I Had Known List.”

1.       It gets easier – the idea of raising a child with special needs (special needs being an umbrella to medical challenges). There’s no time frame on when it will feel normal. But it will. It’ll feel your new normal. That’s not a new concept, but know the timeframe is different for everyone. Respect your partner’s pace and their own way of dealing with the new normal.

2.       You will have bouts of sadness for a long time. But slowly, and at a pace your own heart can handle, the bouts of sadness will decrease. And there will be days, even weeks that you won’t cry from a broken heart. One day you might even forget you had a broken heart.

3.       That the capacity to bear bad news grows. Really.

4.       You are the gatekeeper to the kids’ medical care. When I was holding the itty bitty baby in my arms going to those first few overwhelming appointments, it just didn’t occur to me that I was the one that would need to keep the doctors and nurses on a schedule of testing and monitoring. You will need to call, remind, keep calendars of every test your child will need. You will often tell the doctors’ staff when and where and how.

5.       Keep every piece of paper pertaining to the medical records of your child. It will make your life easier if you get every piece of paper ever written about your child’s medical condition/s – as you go. That means following up with every doctor, evaluator, educator to get every lab test result, echo/radiologist report, and each note from every doctor. Specialists will send your pediatrician a letter after each appointment with them and they contain details about your child’s progress…sometimes things the doctor doesn’t mention and it’s also a good way to chart weight and height for baby books.

6.       It will ease some stress to have said paper in an organized format. What works for me is a binder with tabs that allow us to flip to a section at a moments’ notice. The reason this helps is because you will often need to refer to items when talking to doctors and nurses on the phone. If you ever need to file for medical financial assistance (or a charity’s grant) you will need to provide background on the diagnosis and it will save days and possibly weeks not having to backtrack and get them from several doctors. Bring binder to really big doctor appointments.

7.       Adding new specialists to your child’s Care Team. When there is a diagnosis for one thing it doesn’t usually mean one specialist. More than likely you will need to work with a team of several doctors. When you are adding a specialist it will save time and hassle to copy your child’s medical records and send ahead before your appointment.

8.       Consider setting an appointment with a developmental pediatrician. I wish I had known this during the diagnosis span of time with my first child. Our developmental pediatrician was an invaluable resource for me as a parent and advocator with our second. I found that he had the experience of knowing a broad range of children with all special needs from which to draw and helped me work through what should be normal for my daughter, given all of her problems and all of her meds. He and his staff were very helpful in us obtaining early intervention services offered by the state to assist us.

9.       It’s hard to record the journey. Be prepared that it will be difficult in the early days to record baby milestones, etc. in the baby book. I didn’t realize that it would be so hard to start the baby book not knowing how I should handle the sad emotions surrounding the birth (I didn’t know our first child had any problems until 1 year of age). It worked for me to jot down notes of milestones reached or write down things I wanted to remember and throw them into a box. I was ready to open the box about 20 months later. Because we received literally hundreds of cards, notes, emails it took some time to be ready to relive it all to organize them. I ended up creating one very long letter (I call it a Letter of Hope) by cutting out loving, healing, powerful sentences and words out of every note and card we received.

10.    Accept ANY help people offer. It’s hard to do, but accept the help. People won’t think any less of you if you take them up on their offer to let them know if there is anything they can do, I promise. It’s humbling and life enriching to let people help you. In some small way it captures what the human spirit is all about and reminded me about the pure goodness in people. People will want to feed you because that is all they know they can do, and it is wonderful. Ask them for anything that can freeze – because when the food bandwagon slows down it is mighty nice to pull out some soup and biscuits to heat up. And ask them to give you food in containers you don’t have to return – because you will not believe how hard it is to keep up with the little things in life – including the return of casserole dishes to the rightful owners. If someone asks you if there is anything they can do instead of bring you food…THINK OF SOMETHING. Or better yet, keep a list of things that need to be done handy. Go to the grocery store, mow the lawn, run an errand, buy and wrap that gift you need to send, go to the post office, take the car for tires, etc. You will be amazed at what people will do for you. You’ll be able to focus on your child (or older one) because for a period of time you will be spread thin. It is a wonderful gift to be the recipient of such kindness, but I’ve been told by those that bestowed these gifts of time and love on us, that they were, indeed, the ones on the receiving end of blessing.

 Originally posted on Kidneys and Eyes, circa 2005

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