You Are Not Alone
Having a family member with cerebral palsy can be emotionally draining. When a parent is informed that their child has a serious birth defect it can seem difficult to carry on with everyday activities. Not only is it important to attend to the physical and emotional needs of the child but parents must also meet their own. Maintaining employment, friendships, and romantic relationships can become a struggle when we are stressed. In other words, not only is it going to be harder to care for your child – it is going to become increasingly difficult to care for yourself. Most guardians will have a range of emotions to contend with – these can include anger, guilt, and depression. These feelings are valid – you are not a bad person. A professor once said, “All parents fantasize about killing their children. This is normal. Most don’t actually do it”. Thinking a thought and performing an action is not the same thing.
Most people will experience some turbulence in life. We have to be resilient and use the best tools we have available. Building a strong support system that includes not only friends and family but also other caregivers of children with cerebral palsy is helpful. This cannot be emphasized enough.
Care is Expensive
Caring for a disabled child is costly. If a birth defect is caused by medical malpractice they may be entitled to lifetime benefits. Begin the inquiry process immediately because the longer you wait the harder it will be to get compensation; the statute of limitations for birth injuries vary by state so don’t wait too long to request a medical legal review. There are many attorneys that specialize in medical malpractice. Contact one in your area for more information on legal reviews and what financial resources are available.
Your child is going to need medication – a lot of it. Find doctors that you trust and keep communication open, direct, and honest. Be sure to check online for drug interactions and contraindications (sometimes doctors can overlook these). Many of these drugs have side effects. Keep a journal in case you need to pinpoint what medication or dose is causing an issue. Caregivers should compile a list of all medications administered and when because you never know when this information may come in handy. Keep original drug bottles or containers – if they are recalled (which happens pretty often) you will want to know which “batch” they belonged to. If you need help identifying a medication you can usually locate an identifying number or code on the pill or container.
Recallguide.org offers up-to-date information and it is free to register for an account. This is the simplest way to receive email alerts if your child’s cerebral palsy medication is recalled.
Your child is precious and your responsibility is to do the best you can to provide them with the care and attention they deserve and require. It really does take a village to raise a child. Do not underestimate the power of reaching out for help when you need it.
Don’t feel guilty or weak. We all get by with a little help from our friends. Plus, being helpful and feeling important or significant releases serotonin – the “happy” neurotransmitter – which aids in the prevention and management of depression. It’s like giving your friends a happy shot (that’s why some argue that there is no truly altruistic behavior).
Don’t forget to remind everyone how much you value their support. This can be easy to forget to do when everything is so chaotic but is very important. People are happiest when they feel appreciated.
Lastly, don’t blame yourself if you make mistakes. You are not perfect. You are human, tired, and probably taking on an incredible amount of responsibility for a mere mortal. We all fumble sometimes trying to find our way. A resilient person uses any and all resources available. You got this.