*Since it is extremely time consuming to type with one hand, I’ve decided to re-publish old posts while I’m recuperating from my broken shoulder. I hope you are all having a happy day and not a crappy one!
I have learned many important lessons over the years, since my daughter, Bethany, a brain cancer survivor, was diagnosed fifteen years ago.
I cannot express how desperately I wish that I had learned these crucial lessons any other way than through her heartbreaking and painful fight with brain cancer.
The six lesson I have learned through being the mom of a brain cancer survivor are that:
1) I’m capable of speaking intelligently and confidently with physicians, teachers, and other professionals and that they will respect my opinions and ideas. Before Bethany became sick, I was so shy and possessed very little self confidence, especially when in conversation with people whom I believed were more intelligent that I was or with people I didn’t know very well.
After she got sick, I was forced grow up very quickly. I stopped worrying about being embarrassed. I got down to business and did my research on her condition. I began asking questions and contributing to the conversations with doctors and therapists so that I would thouroughly understand Bethany’s condition and be able to make informed decisions about her care.
2) I’m capable of changing from my usual, meek and mild persona into the mom from hell when it comes to advocating for and making sure my daughter gets everything she needs. I’ve always been a kind and polite person, but to a fault. I would back down and give in at the slightest hint of a confrontation. Now I’m known for being both kind and polite as well as bold and determined when it comes to getting Bethany what she needs.
3) I can love someone who doesn’t always seem to love me back with a love so profoundly fierce and intense that it’s almost indescribable. As I mentioned above, Bethany suffers with anger and aggression at times. During these times, it seems as if she has no feelings, empathy, or sympathy for for others. When she’s in a rage she is not thinking or even caring about others.
But rather than getting angry back at her or getting my feelings hurt, I have come to the understanding and realization that she is suffering herself during these times. She needs me to respond to her aggression in a kind, loving, understanding and non-confrontational manner. She needs me to be her model of how to appropriately respond to disappointments and express her anger. That is one reason why we believe in positive, respectful. and non-violent methods.
4) I have a nearly infinite amount of patience. Before Bethany got sick, I never would have dreamed that I’d one day be capable of calmly and serenely waiting for thirty minutes while a child of mine lay on the ground, melting down in the Pizza Hut parking lot, that I would be able to patiently stand by in a store, while a child of mine traced every single letter on three candy bar wrappers with her finger, or that I would ever have the ability to respond to the same set of questions and go through a twenty minute ritual, every. single. night. before a child of mine would be able to allow themselves to get into the shower.
5) There is peace in accepting a situation that I will never understand, that I don’t want my daughter to be in, and that I am not really okay with. Bethany battles with multiple disabilities and special needs, including an uncontrollable seizure disorder that has been wreaking havoc in her life since she was just a baby and threatens to destroy her chances of a enjoying happy, healthy life on a daily basis. She also suffers with an irrational, unpredictable aggressive and at times violent behavior disorder.
I used to constantly question and search for a satisfactory answer as to why my daughter was being asked to endure so much unspeakable and never ending pain and suffering. I drove myself crazy for many years, as I desperately searched through the scriptures and read spiritual books on suffering, desperately hoping to gain an understanding of why Bethany was being asked to go through such unending torment.
I have never found a satisfactory answer to my question and I doubt that I ever will while I am still alive, but I have found peace in knowing that God has a plan and that He know’s what He’s doing(or not doing) and why He is doing it (or not doing it)!
6) Faith is not praying and then receiving everything you prayed for, but rather, real faith is still believing and hoping even when I don’t get what I pray for. Many people have accused me of not having enough faith. I’ve been admonished by some that if I had enough faith and prayed effectively and fervently enough, that my daughter would be healed. For years I was told and I believed that it was my fault that Bethany was not being healed.
But, I have learned that real faith is not getting what you ask for in prayer. Prayer is not a good luck charm. Real faith is still believing in God, still believing that He can miraculously heal Bethany, and still having hope that someday, somehow, somewhere, (even if it is in heaven), God will heal Bethany from all her infirmities and stop her incessant suffering.
And God shall wipe away all tears from their eyes, and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain; for the former things are passed away.” Revelation 21:4
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