Chronic Illness and Therapeutic Parenting

My name is Sarah Sanchez and I’m the Family Contact for Rio Rancho. Intentional parenting in general is a lot of work; parenting kids with attachment issues or troubled pasts requires you to function at a level most parents can’t comprehend. When my husband and I decided to add adoption into our house we were ready- physically, emotionally, and financially. We had three biological kids and knew we had more resources to share. During our two-year adoption period, I was involved in an auto accident that I was struggling to get over. We brought home two toddlers from Ethiopia and were thrilled to have them in our family. Two months after they came home, I was rear ended once again, but this time I wouldn’t recover. Here I was with five young kids, two with attachment issues, one with severe dyslexia, and one with gluten intolerance. And I was ill, not often, ALWAYS. Not only were we doing attachment therapy, speech, and OT but I had to be at the doctor or chiropractor a couple of times a week for my issues. It destroyed our plans to keep the kids in the house as much as possible because I had to take them to these appointments, which caused chaos when we returned home. This year I was fortunate enough to get a diagnosis of Lyme’s Disease and undergo treatment. It had been masked by the accidents, but it had been there for years, causing chronic pain, and fatigue- morning, noon and night.

I continue to meet parents who are in a similar situation as I am. They are struggling to meet the needs of their “hurt” kids, but with the added intensity of their own chronic illnesses. This lays the foundation for a potential disaster.  For myself and so many others with chronic illnesses, we have spent a fortune on medical care. Many families find themselves unable to hire help for cleaning, sitters, and tutors because so much of the available resources each month are going into dr appointments, therapy, etc.  The following points are the things that I’ve found essential to parent hurt kids while living in physical pain:

1.      Ask for help.   I struggled to ask for help early on because I felt like this was something “we” got ourselves into, and “we” needed to handle it. I eventually realized that I needed help from healthy people in our lives to get through this time. Another strategy was doing bedtime dates- put kids down early, and try to stay up and enjoy the quiet. Again, for sick people this is tough.

2. Self Care- Do it.  Taking care of yourself and your relationships is difficult when you have lots of kids, because their needs are endless. I’m  now better at giving myself permission to shut the door, go to bed early, or rest. My limitations as a sick-parent are real and hard to swallow some days. But here is the thing- even healthy parents have limitations, ours are just greater. Grieve the loss and then form a plan- what is realistic for you to accomplish today, this week, this month, etc. Consider having an understanding friend help you sort out a plan. Consider joining the child-care swap available through FIESTA. That way if you are having a bad week, you have another pool of folks to help.

3. Grieving.  Parents living with chronic issues face a lot of losses. It is hard to acknowledge the “huge loss” of “this is not the life I planned for my kids”. Because you face losses everyday with your kids- I can’t take you to the park today, I don’t have the strength, or you have to go with me to this appointment because I can’t afford a sitter, I can’t do laundry and dishes today. I felt like I was failing on so many levels. But I needed to form new expectations as a sick/disabled Mom, and ditch the “high” expectations I had for myself. That process is grievous, I felt like I was always “compromising” which also felt like a loss. I learned that there are therapists who specialize in working with families who live with chronic illness.

4. The NEW Normal??? Whatever that means. For years I had Doctors tell me to focus on a “new normal.” For us, this meant our kids couldn’t (currently) be involved in extra curricular activities. This breaks my Mama heart regularly, but it is necessary. We have learned to play more games at home, host more movie nights and do home-based activities. They do have a mom who, even if I’m on the couch, can provide emotional love and support. It also means my home and my car almost never look the way I want,  because I can’t keep up. I can be upset about it and disrupt the emotional atmosphere of the house (we all know how well our hurt kids respond to that), or use the opportunity to teach my kids many, many lessons. For example:

                  *We care about people more than possessions. If someone among us is weak or sick, we must care for them-it is easy to do this FOR our kids but much harder to let it be us that needs the care.

                  *We try to focus on the many things we have, and not dwell on the things we want.

                  *Growing up in a household with special needs teaches kids to be empathetic and caring. It has taught all of us to be generous with our time and resources for people in need, and they would all agreeJ

In closing, if you too are living with a chronic illness and trying to be an intentional parent in spite of things, you have my sympathies. It is beyond difficult and often lonely. Many people will not understand, and you have to be ok with it. Let me leave you with a quote that I think of almost daily.

ATTITUDE   by Charles Swindoll

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.”

Sarah Sanchez

Avoiding the Holiday Blues

December can be a stressful time of year, not only for our kids, but also for us. Planning too many things to do can create anxiety on our families with too little sleep and loss of routine.  Envisioning your kids delight while opening a hundred presents with shiny eyes and a grateful heart can cause us to resent them when they can't measure up. Not taking care of ourselves can make the whole month take on an ugly tarnish. Here's some tips for making it easier:

1. Scale back- only do those things that will bring your whole family joy. Don't get carried away with the feeling of obligation to friends and extended family. If you can't attend every event or party, send apologies and carry on without guilt- your child may not be able to hande every get-together.

2. Schedule in plenty of down-time and quiet time. Make crafts together if your child enjoys it, read holiday books, eat by candlelight. Take advantage of the quietness and sensory parts of the holidays with nice smells and tastes, playing in the snow, playing soft music. Avoid busyness.

3. Think about gifts as things that will benefit your child instead of only things on their lists. Remember that whatever you buy may get broken, so expect it. Don't buy expensive things that your child is not ready to take care of. Don't over-do it with numbers of presents either. Think of things that will help your child connect with you- for example, you could go ahead and buy that video game system, but commit to playing together and buy a timer to go with it :) Lay down ground rules from the beginning to avoid power struggles. Think of gifts that you can build together, read together, listen to together.

4. You may dream of taking your child to a special concert or program, you may have wonderful warm, fuzzy expectations of going to grandma's and letting the cousins all play quietly in the other room while the adults visit. But. Your child may not be there yet. And if your plans are ruined by a meltdown or power struggle, your disappointment may cause a problem in your relationship. Think about your expectations and dreams and modify them. It's not your child's fault that you have unrealistic expectations.

5. Pay attention. It's easy to get distracted during this season and not notice signs that your child is starting to get stressed or anxious. Make sure that you're mindful of the clues that something may not be exactly right, and take a few minutes to pull your child aside to make sure everything is fine with them. If it helps, make up a secret sign or code so that your child knows he/she can have your attention when they need it. In our family, if one of our kids says, "I need to talk to you in your office," it's code for, "Something's up and I need you alone." I always respond when they say those words and we find a quiet place to talk.

6. Schedule time to re-charge. Write it on your calendar- "sit on front of the fire with a glass of wine," "get a massage today," "get respite to have coffee with a friend." Not letting yourself get burned out can make all the difference between enjoying the holidays or seeing them as a burden.

Scaling back, re-thinking your expectations and focusing on your child's emotional temperature are three ways to keep the "Happy" in "Holidays." I hope that your family has a fun one this year with plenty of time to play and connect!