In the last year, my husband and I have been forced to join a club that no one would ever choose. Our daughter has become seriously ill. We want to share several things we have learned in this process to help encourage others walking this treacherous road.
1. Do not assume that a change in behavior is only related to mental health. Our daughter’s initial symptoms were anxiety and depression. We wasted time treating symptoms when we should have focused on determining the root cause. If you see a significant change in your child’s behavior or emotional health, please speak with a physician about your concerns. There are a variety of biological problems that cause mental health symptoms. Encourage your physician to rule out those possibilities first.
2. Until you are certain of a diagnosis, mask your fears as much as possible. Adults comfort children, despite their own fear. It is appropriate to be honest with children, but only to the extent they can comprehend the truth and reality of the situation.
3. Do not discuss intricate difficulties of the illness in front of your children. Hardships such as missing work or financial struggles can make children feel guilty for becoming sick. Protect them from these problems and allow them to focus on healing.
4. Advocate for your child as much as possible. Trust yourself and challenge medical experts if necessary. As a medical provider, I have been guilty of drawing conclusions without sufficient evidence because appointments and insurance have limitations. If you do not feel confident about the answers provided by a medical professional, ask more questions, or obtain a second opinion.
5. Sometimes medical professionals do not understand your concerns because you are not able to effectively answer their questions. It is vital that you fully document changes, symptoms, and concerns so that you can provide a “big picture” to your provider.
6. Keep the daily routine as much as possible. Illness is a thief, so protect your children by maintaining normality.
7. Engage in self-care. Join a support group, attend counseling, go out of your way to spend time with friends, work out, read, etc. It is vital that you preserve your mental, physical, spiritual, and emotional health so that you give your child all that he/she needs.
8. Please, please, please follow through on treatment suggestions. As a medical provider, I often find myself begging parents to “do the right thing”. My heart aches knowing that a child may not overcome a developmental delay because a parent is not willing to spend time practicing skills. In the same way, pediatricians are frustrated by parents who only feed their children unhealthy food or do not enforce appropriate sleep schedules.
9. Research a variety of treatment options but focus on valid and reliable sources. Attempt to only seek advice from professional and/or experiential experts.
10. Keep having fun! Discourage the dreariness of illness to limit the excitement of life. Fun may look different, but do not allow the loss of what you imagined to inhibit your enjoyment of reality.
Please know that we are praying for your family and your children. We hope that you are filled with peace, joy, and laughter despite whatever difficulties you are experiencing.