It will require a strong commitment, a positive attitude, and a compassionate heart. Over time you will find a certain rhythm to the seasons of change, stability, and grief. While scary at first, this rhythm, a balancing act of sorts, will open the door to confidence, hope, security, and peace of mind; and all the while you are learning to become their best advocate and their best caregiver.
I have found, over the 15 years of being a caregiver to our daughter, Gabrielle, learning to love her involved so many layers. When we brought her home from the hospital we did not have a tutorial on how to be a “caregiver”. There was no caregiver class 101 for us to take. Transitioning from our role as parents and my own role as her mama, to now physically, emotionally and medically caring for her 24/7, required a whole new mindset. My love for her was always there; just as warm, intense, and wonderfully amazing as it was for our other children. But, with her there were so many layers between us that I had to learn how to bridge the gap.
Layers of Loving
Layer of her illness and disability
There was learning to look past her illness and disability and see her in a new light. I had to look past her inabilities, not being able to walk, talk, or care for herself and see that she still was my beautiful daughter.
Layer of the daily grind
There is something to be said about learning to love the daily grind of physically caring for your loved one 24/7. It takes a strong commitment to get up each day and medically care for them; from the daily tasks of bathing, dressing, and feeding to the weekly tasks of working with them on therapy exercises or teaching them a new way to communicate.
Layer of the Logistics
There was learning to love the process of organizing, planning, and managing our daughter’s health and wellness and all of the logistics that came with it.
Layer of the Caregiver
There was learning how to love myself in this new role as her caregiver. In some respects it is an easy job to do. In other respects it is the hardest thing to get over.
As a caregiver it is easy to be hard on yourself. You have feelings of guilt, shame, fear, and anxiety. It is easy to feel stuck in the unknown of the why’s, how’s, and when’s of it all.
Why did this happen?
How did this happen?
When will it end?
Remember, the love of a caregiver is the gentle reflection of the love in their heart. If you look closely you will see that the love of their heart is a reflection of Christ’s love. And that love is something to behold.
For the mama who loves the child who cannot understand, who may have multiple disabilities and medical diagnosis’, who may never see their child reach their first birthday; the love that it takes to care for those afflicted with chronic illness, terminal disease, and disability is a sweet, sweet love mirrored by and instilled in you by the Lord Jesus Christ.
The journey will be long and challenging but it does not have to be full of guilt, shame, and pain. Remember to nurture your space just as much as you nurture theirs. Love yourself just as much as you love them.
As you realize the importance of loving yourself you will find it easier to make time for yourself. As you do that, you’ll find that a healthy you, a healthy caregiver, will turn into a healthy loved-one. The two go hand in hand!
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