Mommy is Broken

I am not on this journey alone. I have an incredible support team, great friends, wonderful extended family. The ones on this journey, spending long amounts of time each day, are my children. Three little ones, two not yet in school. They know I am different. I haven't been able to pick them up, carry them, rough house with them, or drive them places...so much is different.

"No, mom, use your old voice."

                                 "Mom, can you chase me?"

                                                                          "Pick me up, please."

When they walk with me my children have to go slow, I use my cane and for safety slow is best. A fall could severely damage me. They sometimes grow impatient or ask if I can run with them, I can't. I have been able to find afternoon help so that their lives are not limited by me, but I know that as I watch them play, how much I miss being able to play with them. It breaks my heart to know that if they fall asleep on the couch there is no sweet walk to their room in my arms.

Some days are better than others and I find myself able to connect and share with them. I often wonder how many other parents struggle with young children and post surgery trauma. Here are my guidelines.

1. Focus on what is the same. I can still hold and rock my boys, the only difference is that they need to climb into my lap. I have found that with some accommodations, many of the things that we enjoy are possible. I cannot play video games with my kids, the stimulus and activity is too intense. What I can do is sit by them and cheer them on, watching when I can and taking frequent shut-down moments.  I can watch my children play and climb. I can coach them through relaxation activities when upset, even if I can no longer help them solve the problem. Some days, I have found I am Almost Normal.

2. Find good things about what is different. With my children we find that not all the changes are bad. I am more patient. More willing to listen. able to take things at a slow pace, anything else is impossible. So, we enjoy slow walks; we look for spider webs, look at the mountains, feel the sun on our cheeks. I am finding that I like taking small steps and finding the small moments with my children. I find peace in taking time to rock them, to connect fully one-on-one with no other mental energy being spent elsewhere.

3. Find special moments or traditions to build with each child. I have found that by allowing my children to shape and share in choosing activities, mom isn't so good at thinking about things like this, they are more invested in the activity itself. These moments become more personal and they talk about them more than if I had planned a perfect event. Each week we try to spend time one-on-one with each child. This can take some creative planning, but a few minutes each week is completely possible.

4. Do not allow guilt to creep in when you do as much as you can.  This is what every good parent does. We give as much as we can when we have it. You can not pour water from an empty vessel. Accept that you will miss some things. There will be things you cannot do. Accept that this is the reality now. As long as you connect and built relationships of trust and love with your children, they will not lack for the emotional and physical development they need.

I am incredibly blessed in my journey to have loving support help me with the most important things in my life. I am blessed to have neighbors ready to help in case of emergency. I am blessed with rides to the grocery store when I need them. I am blessed. God is good. Work around instead of against your limitations and you will discover moments of pure joy.

God bless and keep you in His care.

Goals and Plans

The holidays come to us with joy and frenzy. Dealing with brain trauma/injury on top of that can easily send us over the top. We become fatigued and stressed by events that in the past we simply took for granted. Planning and priorities take the place of frenzied activity. This is not a bad thing. Paraphrasing advice on goal setting from Dennis Bonner, Ph.D. I have come up with the following guidelines.

 

1. Determine your long range goal. For me this year it is simply to spend quality time reinforcing traditions and connecting emotionally with my loved ones. That is a broad goal that can be overwhelming if I tried to do it all now. So, break it up into small do-able pieces. Each week try to have one emotionally honest moment with a loved one. Determine which holiday activities are important to continue this year, let go of the rest. Santa, for us that is a must. Looking at lights, another must. Caroling, not necessary. Sit down with your family and determine family goals and determine an order of importance, you may find that little is actually irreplaceable.
2. Set goals that stretch but do not overwhelm. You know your limits best, be honest about them. I am going to the opening day of Star Wars. This will stretch my abilities but I have support systems in place and plans such as headphones and polarized glasses if it becomes overwhelming. The actual event of sitting with my family to experience that together, it's worth planning for.
3. Set a simple schedule based on your priority list. Be honest with yourself. I can handle one simple hour long event per day; this means that I have an exit strategy if I get overwhelmed and as explained above, ways to help me regulate when overwhelmed. Be flexible. My speech pathologist reminds me to set my schedules in Jello- be open to change and ask your loved ones to support you in this.
4. Have reward and rest periods. You made it through your kids school concert with lots of people, sounds, and light- you have all earned an ice cream date. Enjoy.
5. Revise- it is ok to evaluate and revise your plans based on your real capabilities. What is not done now will happen again in the future, the thing to remember is "yet". You are simply not ready for that, yet.
6. Write it down. I keep a monthly and daily schedule. Both help me stay on track. You can no longer trust your memory, so take a notepad or method of recording appointments and activities with you. I even have my medication dosage times programmed with a reminder ring into my phone.
7. When writing goals be personal and proactive. Create the reality you wish to have. Begin with "I". Use emotional and action words to embrace the change and your reality in the change. Examples can be "I love walking every morning."  or "I feel amazing after my physical therapy stretches."
8. Put the goal where you can see it everyday. Right now I have motivation statements posted in my home. In addition to pictures of my loved ones reminding me what I am working for, I have the following statement posted where I see it multiple times per day: "Don't be gloomy. Do not dwell on unkind things. Stop seeking out the storms and enjoy more fully the sunlight--"

You can make it through the holidays after brain injury and surgery with amazing moments and experiences of love and caring. Take time, plan for it, and be easy on yourself. You can do this. It may not be yet, but it will be again. You've got this. God bless and keep you.

Holiday Suggestions; Don't be Clark

As you are recovering and healing I have found any number of things that help. I can implement a few. with the holidays coming it has become necessary, at times, to set some clear expectations and guidelines. It helps keep me from becoming overwhelmed and enjoying the holiday.


First, if you are familiar with the movie Christmas vacation with Chevy Chase, don't be Clark. Don't imagine and create such high expectations of yourself and others that you are destined to be disappointed. Instead be clear about what really matters, narrow it down, and focus on the people not the activities or gifts. Below is a letter I sent to my planned guests this year, I hope this helps as you head into holiday season.

"I want to be clear and open about my anxiety over our upcoming visit.  I also hope to create a space of clear expectations so that this visit is positive and family based.  I do everything I can in a day.  It is enough to keep things running but any more sets me back.  Here are some thoughts that may help. 1. My impulse is still to overwork; sticking to my schedule makes sure I use my rest times.  I cannot function without rest times.  I have them set up to use as I require. I  know when and how to address stressors as they occur in a way that works for me.  2. Rest times are periods where I mentally withdraw to regroup. If I perceive a threat or pressure, that time takes significantly longer than normal. 3.  I plan everything in advance; my week, my day, my meals.  I still cannot handle changes to my scheduled plans.  If there is a necessary change I need additional time to process and regroup. 4.  I am as active as I can be and the boys are adapting well. Pushing because it is the holidays will result in a shut down.  I am getting things ready now to help reduce the occurrence of such an event. 5.  I can't handle criticisms or suggestions.  If something is safety related or a true emergency lets handle it.  If not, it really doesn't matter enough.  The stress will cause more harm than the benefit of any changes. 6. I have found that both the kids and I require down time each day.  Unstructured rest time that we use to recharge.  It is not good for me and I have found it is not good for the kids to be busy or entertained all the time.  I think if we keep things in mind we can make this a great visit. Thank you!"

 

The response from my family was wonderful and helped to address my anxiety and fears. If your family and friends cannot support your limits, it is ok to make plans to see them at another time, outside of the holidays. If you both work to be clear, open, and flexible, the memories you make will hold you through the coming year.

 

God Bless and keep you. You are His, always.