Some months ago, I wrote a short blog article about the ebb and flow of parents with special needs children. I have reposted the original article below, as it resonates with so many and captures the essence of that minute-to-minute, back-and-forth, an up-and-down journey that is often difficult to articulate accurately but so appreciated when one "gets it." Also, since I originally wrote this, I have spent time with more caregivers, of both disabled children and those caring for adults experiencing cognitive or memory challenges. I felt this topic deserved another visit and some additional sharing.
"MY FEELINGS OF GUILT ARE OVERWHELMING"
One might wonder how guilt can be so attached to this caregiving experience. Is it guilt that you're not doing enough? Is it guilt that somehow you contributed to your loved one's condition? The answer may be yes to both questions, but what I also notice is the immense guilt we navigate due to feeling so frustrated, angry, resentful, impatient, and mournful. I don't mean that this is going on all the time, but even having one bout of this downward spiral for a brief part of your day can lead to tremendous guilt. You often hear, "you are human; of course you're going to feel this way." You may have learned coping strategies, reframing mechanisms to help us get through it, physical/mental respites, exercise, deep breaths, prayer, and maybe the importance of shedding much-needed tears...but at that moment, no words can erase that guilt.
ON THE OTHER SIDE OF FEELING STRESSED, WE MAY REALIZE WE ARE ALSO BLESSED
I've realized that we may need to embrace and accept it. Why try to erase that moment of guilt? We may be trying to swim upstream. As long as we don't let it take hold of us permanently and know that in those extremely stressful, challenging moments, they are "MOMENTS." And yes, maybe even guilt-ridden ones because there is no specific guide to your caregiving journey that is perfectly crafted to eradicate all "ebbs." But afterward, when you can regroup, and reintegrate yourself into your caregiving world, the "flows" can lead you to realize your blessings. Perhaps you take note of the simple things in life for which you feel grateful, or you reflect more upon your situation and acknowledge that you are experiencing other amazing things in your life due to being a caregiver of your loved one. Maybe you learned something valuable from one of those challenging experiences.
I have sat with numerous parents and spouses describing the same emotional journey and I am often in awe over the shared strength, faith, and grit it takes to cope on a daily basis. Caregivers may have completely different circumstances and stories, but they share that "I get it" with the range of challenging emotions and intense guilt, and they understand the bouncing back and forth between feeling stressed and blessed.
From one caregiver to another, may your parenting/caregiving journeys encompass the necessary and critical self-care needed to balance out your stressed, guilt-ridden moments, and I pray that you experience more moments of feeling blessed. And when you get to that next inevitable stressful moment, it may help to remember that it's OK to feel this way; there is another side to it, you can seek out support for it, and you are not alone.
One moment you may look at your child with developmental disabilities and feel an overwhelming sense of peace in that they have innocence with their dealings in life. And the very next moment, your stress levels can peak because your nonverbal, cognitively disabled daughter is having a meltdown in public, and she is so anxious that she is physically lashing out at you as you try to help her. Let's go a step further...you finally get her in the car, settled, and she falls asleep. You look at her face knowing she could not help it, and yet you feel so angry that it happened, you're mad at yourself that you did not prevent it, and possibly even resentful in that THIS is your reality. After sifting through these raw feelings....once again, you see that innocence...and you gear up for the next part of the day.
Does this sound familiar? Do you have a disabled child that stirs these moment-to-moment emotions with you, piling on layers of complexities because, in addition to the above listed, you may have also had to move your child out of the car physically, or you had your children witness this experience (probably for the millionth time), and you know this life you are living will impact them on some level? What about your marriage? Were you able to vent to your spouse or significant other? Will they be there to help you when you get home?
I'll stop there b/c the examples and questions are endless.
I get it..I really do. I have lived it and am living it. Although we all have different children with different abilities/disabilities, there is a thread that connects us on an emotional level. I have to take a deep breath just after writing the above example.
If you are a parent of a special needs child, or a family member dealing with this unique family life, you might need a place to work through these interwoven emotions, find solutions to your daily living, and just have that place to take a deep breath. A place to heal from your "blessed but stressed" life.
Please call me for a FREE 20-minute consultation and I'll answer any questions you may have regarding my therapy services and how I might be of help to you and your family.