Public or Private? You will want to decide how public or private you want to be. As mentioned previously, we set up a CaringBridge website and went totally public, and were totally honest in our postings. We found it extremely painful to have to discuss the same things over and over again (how did the MRI go, etc?). People are asking because they care, but it doesn’t mean you need to put yourself through the pain of discussing your child’s care, tests, etc., on a daily basis. We found that sending a periodic update by email worked well for us. We ended up with a large distribution list of people who wanted the news, but there were also many people who used the website exclusively. As soon as we sent the email updates, we posted them on the website with photos. The other benefit of sending email updates is that you can receive people’s responses when it works for you. You can sit down at the computer and cry when it is convenient for YOU, not someone else. We also received comfort from the postings that people put on the website (or the emails they sent in response). We saved the “comforting” emails in a directory so that we could read them again later.
Many people asked us how they could help. Your first instinct might be to say “nothing”, because in the scheme of what you are dealing with, everything seems insignificant. You may also find, as we did initially, that asking for help is difficult and not in your normal ‘nature’. Different people have different gifts in life. Those that possess the gift of service truly WANT to help you. We learned that little things DO help. Anything someone can do to help you so that you spend more time with your child is worthwhile. So when friends or family ask you, here are some answers (and feel free to quote this website, so it doesn’t sound like you are coming up with these ideas):
1) Meals – this is a big one. Don’t turn down any food. Food is comforting and a way for people to show that they care. Our neighborhood brought us dinner every Wednesday night for 4 years! A woman from another church coordinated meals through her church on a weekly basis and when she changed churches, she did it herself twice/month for years. She is now a life-long friend (as are other friends who we met when they brought us a meal). We did not schedule meals for every night, because we ate the leftovers the next night to prevent waste. We had one person from each group (church/neighborhood) that coordinated the meal volunteers for their night of the week. It would have been a lot easier for them if we had known about this website:
www.TakeThemAmeal.com To quote the website: “For those times in life when filling their table will warm their hearts. Simplifying meal coordination so friends, family, neighbors and co-workers can show they care. Create a customized online sign-up sheet to include phone numbers, driving directions, food allergies and more that makes it easy for friends and family to take meals to those in need. Invite friends to participate right from your completed schedule. We send reminder emails.”
2) Laundry – some amazing women from our church put our laundry on a weekly rotation schedule. They took it away dirty, and brought it back clean and folded/hung up.
3) Housecleaning – maybe some of your friends want to do it for you. Maybe they want to all pitch in money to get you a housecleaner for once or twice / month. Don’t say No! This is a practical expression of compassion for you. It’s hard to have other people “in your dirt”, but it’s worth it. If someone will clean your bathrooms or kitchen or dust or vacuum your home, it is a wonderful blessing.
4) Chauffeuring the kids: Let your loved ones drive your other children to their practices, or to school. You will want to keep this in balance so the other children don’t feel shuffled away.
5) Yard work – Mow the grass, weed and mulch the flower beds, trim the bushes. Let them do it if they offer!
6) Handyman Chores – any little thing you need. Start a list, so when someone asks, you’ll know what you need.
7) Holding your fragile child – Sometimes the child just needs to be held. No major care issues, but just for comfort. This will give you the freedom to pay bills, check your email or play with your other children, and know that your fragile child is being loved on.
8) Organize necessary holidays or events – If you tell a friend that your older child’s birthday is coming up, that friend might be able to plan a party for you.
9) Creative Memories albums of the photos of your child
10) Running errands – Grocery shopping from a detailed list is a great item to pass off to someone else.
It took us awhile to realize we needed help. It may for you also. We had the thought that we could do anything for six months. Dylan was diagnosed at 8 ½ months, and the average life expectancy was 13 months. We wanted to spend every second with Dylan. But six months turned into a year, and a year into two, and two into three, and three into four. It became apparent that we couldn’t carry on indefinitely without help. Just feeding Dylan took at least 4 hours per day. We were fortunate that Phil worked from home during part of that time, and was able to come in and out to help. Getting help, the right help, was a great decision.
In comes Heather. Heather was one of the most strong and brave young women we have ever known. She was completely unflappable. Dylan could throw up all over her, and she would clean him all up, then just ask to borrow a shirt. The list goes on. For three years, Heather was our right hand (for about 15-20 hours/week). (Heather was our main helper, but we had a total of 5 others.) Heather’s job started out as doing things around the house that Amy couldn’t do while caring for Dylan (dishes, laundry, making Dylan’s food, dosing his medicine, etc). But as the trust grew, she was able to assist in Dylan’s care. Having someone we trusted to feed Dylan made an amazing difference for us. Amy could leave the house (which she barely did for the first 6 months). We could go to our older children’s sporting practices (Dylan usually went to the actual games). Having help inside the house gave our other children a much more “normal” life. They could still have our attention and we were able to participate in their activities.
Here are our suggestions for making this situation work:
1) Set expectations: Make sure the helper plans to be busy all the time. This isn’t a babysitting job where they get to hang out and watch tv while the child sleeps. There is plenty of work to be done and not enough hands to do it.
2) Make a To-Do list: It is much easier for a person to work from a list, than to be told every little thing to do. Have her do the things that are most efficient for someone else to do.
3) It is an investment to teach someone how to do things around your house. At first it will take you as much time to tell them (food or medicine preparation, etc) as it would to do it yourself. However, the next time, your helper can do it without you. Feel free to make notes or lists of instructions.
4) Treat the person like a family member (or maybe a little better!).
If you are reading this website because you KNOW a family who has a Krabbe child, please keep reading.
1) First of all, read the above section “What Can We Do?” How To Answer That Question When Someone Asks to find many practical ideas of how you can be helpful. If you offer something specific, you are much more likely to be able to help than if you leave it to the suffering family to come up with the idea. Even if you truly mean you will do “Anything”, it’s better to find something specific and actually DO it than to have an open-ended offer.
2) This is a quote from Nancy Guthrie’s book “Holding Onto Hope” and it accurately describes how we felt also:
"Those who shed their tears with me show me we are not alone. It often feels like we are carrying this enormous load of sorrow, and when others shed their tears with me, it is as if they are taking a bucketful of sadness and carrying it for me. It is, perhaps, the most meaningful thing anyone can do for me."
This is a quote from us to our friends and family: “Many of you have cried for us and with us, and we thank you for making us feel less alone in that way. Also, thank you for laughing with us when we are able to laugh. It doesn't happen often enough.”
3) The family’s needs will change over time. They may not be able to articulate the needs or the fact that they have changed, but your being present is helpful. However, they will also need “space” to grieve in their own way.
4) One thing the family may not be able to ask for is a place to go for holidays. The holidays need to happen (they will want to create the memories), but they won’t have time to manage it. We had one precious family who let us just show up for many major holidays (Easter, Thanksgiving, Christmas, New Years, etc). It was a relief not to have to plan or cook for these big events.
This one should be a book. How does having a terminally ill brother or sister affect a child in the long run? Our jury is still out on this one. But we can give you some thoughts.
1) Grief Counseling helps. Our Grief Counselor through Hospice met with each of our other sons individually about once/month. They each reacted differently because they are different personalities and at different stages in childhood. But it helps for them to have someone else to talk to so they don’t have to worry about hurting Mom and Dad’s feelings with anything they might say. Our Hospice also had a summer Grief Camp for children who had lost a loved one. One of our sons did this and felt good about it, but the other one wasn’t interested, and that is ok.
2) Stay involved in their lives. This means attending their activities as much as possible, but also by keeping communication lines open. Talk to them. Let them know they can tell you their feelings and that everything they are feeling is normal. Share (some of) your feelings and fears. We made sure Dylan was also involved in their lives by taking him to baseball games, basketball games, etc. It was sometimes difficult to make this happen, but we consciously decided to “live life” with Dylan and we think our other children benefited from this as well.
3) Siblings need to feel helpful. Find ways to let them participate in caring for their brother or sister. Involvement in therapies is an especially easy place to get them involved.
4) Let their teachers know what is going on. Our boys did not want to talk about it at school, because that was their “safe place” to be “normal”, not “Dylan’s Brother”. But they knew that their teachers knew about Dylan. The boys could bring it up anytime they wanted, IF they wanted. This also gave us an opportunity to ask their teachers to let us know if they saw any behavioral changes at school that we might need to deal with at home.
Your marriage will be put to the test during your child’s illness. You may find you are much closer. You may also find that any problems you had before are much worse now. You may find the stress causes you to fight much more often (but do try to do it away from all children). You may also find that financial problems related to the illness add even more tension to the marriage.
It is very important to realize that your spouse may deal with the day-to-day impact of Krabbe in a way that is very different from how you deal with it. Just as the siblings of your child with Krabbe disease need someone to talk to, both you and your spouse need a safe place to share your feelings. When we say safe, we mean a place where you don’t have to worry about the feelings of the listener – which often means a professional counselor (and not your spouse). Parents often don’t talk about their own feelings due to concern for their partner, “he’s having a good day, I don’t want to ruin it…., he’ s having a bad day, I don’t want to add to it…, I’m afraid I’ll break down”. They also find that talking to relatives or neighbors can be more stressful than helpful due to their own pain. Also, people just have no idea what to say.
We found very early on that Amy became emotional with surprise questions like “How is Dylan doing?”, especially if it was in passing conversation out in public. (Because the answer “He’s dying” automatically comes to mind, but that’s not what they’re asking, etc.) Phil took on the role of informing friends that Amy was best supported by just giving her some time away from the disease without having to discuss it. Going to dinner or a movie with a friend and talking about “normal” subjects was the best thing for her. Although it was also important for people to understand that nothing about your child dying is “normal”. Phil also found that when people asked questions that he knew would upset Amy to answer, he could jump in and answer the questions with less emotion and save Amy from having to do so. Phil also found that he “needed” to talk to friends about Dylan and wanted to make sure friends were in-the-loop and talked about Dylan instead of ignoring him. Amy understood that and allowed those conversations (while not necessarily participating), instead of trying to change the subject. Amy also knew that she would cry nearly every time we talked about Dylan with other people. Her “protection mechanism” was to write about it, and try to put the information out there before people could actually ask about it. That is part of why we were so open with everything by email and on the website.
Statistics are scary about the effects on marriage from having a special needs child. The death of a child is one of the most traumatic things that can happen to a marriage. Therefore, it is important to build in some time to nurture your relationship and seek professional help to stay ‘in tune’ with each other in this stressful time.
We found a book which came highly recommended (although we did not know about it until recently, and so have not read it). It is Married with Special-Needs Children: A Couples' Guide to Keeping Connected by Laura E Marshak PhD and Fran P Prezant, M.Ed, CCC-SLP. Here is the description of the book, which can be found on Amazon.com:
At last, a guide that speaks to parents about how to work on marital issues while juggling the demands of raising a child with a developmental disability, serious medical condition, or mental illness. In writing this practical, empathetic guide, the authors draw on their combined professional experience in marital counseling and parent training, as well as on the experience and advice of hundreds of parents of children with special needs.
Married with Special-Needs Children looks at the ways in which having a child with special needs can make it more difficult for a marriage to thrive and how a child's intensive needs can change the structure of a marriage. The authors examine many of the underlying stresses and common pitfalls --a couple's differing coping mechanisms and expectations of a child, communication breakdowns and difficulties resolving conflicts, for example. They then present a wide range of strategies for handling or preventing these problems. Marshak and Prezant also describe what makes a marriage strong, such as continuing to share connections outside of parenting roles, keeping a sense of autonomy, and sharing childcare responsibilities. Parents get advice about the importance of romance and intimacy and the benefits of finding time for each other even when they feel too tired or overwhelmed. In addition, the book deals with serious marital troubles and divorce considerations. Throughout are quotes from husbands and wives, offering special insight into what was especially difficult for them, what solutions they've discovered, and what they wished they'd done differently.
For parents looking for ways to strengthen their marriage, prevent future strife, or resolve or move on from significant relationship difficulties, this guide offers guidance and expertise for taking the next step. Married with Special-Needs Children is also invaluable to mental health professionals, giving them a realistic view of what many of their clients are dealing with on a day-to-day basis.
The dictionary definition of respite is: a short period of rest or relief from something difficult or unpleasant. The “medical definition” is: a temporary rest period or break for caregivers of the ill or disabled. It is important for you to find some respite from your care-giving duties. You must take care of yourself, or you will be no good for your fragile child, your spouse, or your other children. In order to care for yourself, you need breaks from caring for your child.
This may be as simple as your spouse taking over for 2 hours so you can take a nap, go shopping, go eat with a friend or get a massage or pedicure. At first, these activities may seem ridiculous, given what you are going through. But as you emerge from the short run (sprint) into the long-run (marathon), you will find that breaks are necessary for your health and sanity.
You can see the section titled Witness if you are not yet a Christian. If you ARE a Christian, we recommend asking people to pray for your family in specific ways, and update them on what you need. People find it really helpful to be given specifics to pray and they are more likely to do it also. Here is a sample of how we asked our friends and family to pray during the early months of Dylan’s illness:
Please pray for our family specifically:
+ That Jackson, Conner & Sophie will find peace from God that surpasses all understanding and that their understanding of the situation will come only as they are ready.
+ That our family will heal fully. We are 11 years past Dylan's death and we miss him every single day.