The Web of Love and Life

Children’s Cerebral Palsy Movement works with both families in Orange County and Southern California and specialists like Pediatric Neurosurgeons, Pediatric Orthopedics and special needs counselors in the community and school system.

This week we begin a recurring series with Dr. Kamyar Hedayat, MD, a doctor of Integrative Medicine.

Introduction

In my pediatric training, Cerebral Palsy (CP), like all pediatric disorders, is defined as being about the child affected. You diagnosis the child and treat them. This makes sense with a one-time illness like a sinus infection or a broken bone, but CP is not like these one-time illnesses. It’s life-long. A lot of a caregiver’s time is dedicated to the CP child and their therapies. This is time that can’t be used for themselves, children or significant others.

In the coming blogs, I’ll be sharing my experience with treating children with CP. However, I wanted to start this blog stating that we need to view children within a web of relationships within the family, the community and society. The whole family is what we need to treat when a child has CP.

Caring for the Caregiver

Imagine it’s a hot, sunny summer. You have a large garden and the plants are not growing as you hoped. You till, weed and water tirelessly. You are driven by love to do everything you possibly can to nurture this garden. The first week, someone says, “You need to constantly aerate the soil.” You say, “I’ll do it later.” The next week they say, “You constantly weed your garden, but not the weeds around your house.” You say, “I’ll get to them later.” The third week they say, “You constantly water the garden, while your own throat is parched. Drink some water.” You say, “I’ll drink later.” Before you know it, you’ve collapsed with heat stroke. Suddenly, you cannot take care of your garden for days and when you recover, you can only tolerate spending half the time you used to. In the end, the gardener realizes that if he/she had invested a little time on him/herself, he/she could have taken care of the garden for much longer and with less effort.

A story of a gardener and her garden

The story of the gardener and the garden proves a good analogy to communicate the often stark contrast between how a caregiver cares selflessly for a sick loved one, while not taking adequate care of him or herself. Using this analogy, the garden is the child with CP… the gardener, the caretaker. The weeds around the house are the needs of the other family members.

If truth be told, to take care of the child with CP, the whole family needs to be considered, starting with the primary caretaker—most often the mother or other female family member. Pretty soon, your child will grow too heavy to reposition in bed, carry into the shower, etc.

Don’t just do something, stand there

Take care of yourself: 45 minutes per day.

15 minutes DAILY of personal time

• Call a friend
• Drink a cup of tea while sitting down
• Read scripture or a good book
• Knit

30 minutes DAILY of exercise

• Exercise: A brisk walk around the neighborhood, pushing your CP child in an all terrain device is a great place to start

Don’t forget the others

45 minutes DAILY for the rest of the family

• Spend personal, individual time with each of your other children and significant other

How is it possible?

It is overwhelming at times and some days you can feel helpless and hopeless. It seems impossible to make time for our selves. Look at this graph of a life in the day. The time I am suggesting you spend on yourself is only 3% of your entire day. But it changes your life and that of your entire family.

You each have your own hopes, dreams, goals, needs, and fears. Laughing is great, but sometimes crying is even better. Honor what you have as a family. But remember that it’s ok sometimes to grieve that your family works in a different way from other families who don’t have a child with a chronic health issue. I recall a family from my time as a pediatric critical care doctor. The family lounge was full and this particular mother could not find a place to cry in private. So there, in the crowded, noisy, hot family lounge, the loving husband took a towel and placed it over their heads so that his wife could cry. She cried and cried for a long time. After that, the mother was able to carry on, attending to her sick son in the neo natal intensive care unit. The point here is that you don’t need to look for the moments to nurture yourself. You simply need to believe that you deserve it and opportunities will come.

Every child in your family has special needs

Caring for a child with CP is costly: out of pocket insurance expenses, supplements, devices, modifications to cars and the home…many families sacrifice vacations, fancy cars, clothes, etc. to care for the child with CP. Don’t forget that the other children have special needs too. It’s natural for them to feel jealous, angry, or confused about why the child with CP gets so much time with Mom. Or, they may resent being involved in the care of the child with CP. Either way, spending quality time, counseling, art therapy, expressive arts like theater…there are many ways to help them express their feelings and concerns. A little personal time is a good place to start.

How do I get some help?

While every member of the family must work hard to support each other, participating in a supportive community enhances and strengthens that ability. I believe that Children’s Cerebral Palsy Movement’s community programming can contribute greatly to a family’s success in achieving these goals.