How do we cope with the way we are feeling?
There is no right or wrong way to feel. You will probably feel differently at different times. One minute (or day), you may feel able to cope and then the next day you may feel much more fragile. Some parents say they feel as if they are on a giant roller coaster, and then the good days gradually start to outnumber the bad ones.
It is never easy coping with the unfamiliar. Most parents have a vision for their child and it can be very challenging when this vision is changed by something beyond their control.
Some people find that talking to a counsellor or to their care advisor can help. Ask your GP to arrange this, if you would like to do so. Extra support is often just what you need.
How do we cope with each other’s feelings?
If you have a partner, you may find that you and your partner cope with the situation differently.
Sometimes one partner wants to talk while the other doesn’t. What works for some couples is to negotiate some agreed ‘talking time’ so that each partner’s needs are at least partly met.
If one partner is out at work, the other may take on more of the responsibilities relating to the home and children, including attending clinics. Feeding back information from clinic appointments can be difficult; one partner may not have asked the same questions as the other would have. If you cannot attend appointments together, you may find it helpful to compile a list of questions together, in advance.
Because everyone deals with situations differently, it may be helpful to get support from a trusted friend, or from health professionals.
What about the feelings of others?
It can be very distressing to have a child diagnosed with a muscle-wasting condition, and others will feel for you. They may not be ready for what you have to tell them, so speak to them at a time when you feel strong.
Avoid sharing the information when your children are around. You may think they are busy playing, however they often overhear more than you would expect.
People like to help, so let them know how they can help you. Perhaps they can look after your child(ren) while you have some time to yourselves, or simply just be there for you.
Meeting other families living with muscle-wasting conditions
Many people find it helpful to meet with other families who have a child affected by the same or a similar condition.
You might not feel like it right away. If you do, and when you’re ready, speak to Muscular Dystrophy UK, your care advisor or staff at the clinic your child attends. They can put you in touch with a family that has a child of a similar age to yours.
You may wish to contact them by email initially. This allows you to control the amount and timing of the contact, and you don’t have to disclose personal details until you’ve established a relationship.
Most families who have children with muscle-wasting conditions do meet other families at clinics, physiotherapy sessions or events organised by Muscular Dystrophy UK and other support groups.
Other families can be a unique source of information and support. Unlike the health professionals involved, they are experiencing (or have experienced) some of the same emotions and may have faced similar practical challenges.
Muscular Dystrophy UK often brings together families with children who have muscle-wasting conditions. Contact the care and support team at the charity’s London office to find out more.