mom

Finding, Holding, and Sharing the Light

~ crossroadtrippers ~ Leave a comment

A few years ago, I was writing for an online publication/page for people with disabilities, chronic illness(es), etc. I thought I had found my niche writing about the subject matter I had unfortunately grown accustomed to. I was proud when they posted an article I wrote about my mom and her journey through her search for a diagnosis after years of suffering and a major, quite rare, surgery. I had hoped the bulk of her difficulty would be over but she was since diagnosed with seronegative Rheumatoid and just last year, breast cancer.

She certainly has had her fill dealing with one health setback after another, but sometimes it helps one to know they haven’t been or aren’t laboring alone.

In my experience, one of the hardest parts of having a debilitating or life-threatening diagnosis can be the loneliness, even when surrounded by people. The loneliness is aggravated by the mental toll these illnesses can have on someone. It can cause those of us dealing with chronic illness, especially over a long period of time, to withdrawal, seem distant, and shy away from being around others. That doesn’t mean there isn’t a desire to have others around.

People often don’t know what to say when a loved one is dealing with a chronic illness or life-threatening disease.

It can also be hard to reach out and ask others for help because illness and disease can make those dealing with them feel unworthy of even the relationships they dearly desire.

Disease is a thief. It steals peace of mind, relationships, confidence, trust and so much more. It robs someone of their identity and replaces it with medical verbiage and symptoms. It makes someone feel worthless because their care may require more time, energy and finances. It can make you feel like you are someone you don’t even recognize.

When difficult circumstances  carry an expiration date, that can offer light on the horizon. But when it seems never ending, it no doubt becomes more than one can bear alone.

I hear people say, “God doesn’t give you more than you can handle.” I’ve never liked this saying. Life will give you more than you can handle alone. God made people to be social. He wants us to bear the burden of one another’s lives (Galatians 6:2). He also gives us His strength for us to get through the various trials life hands to us, trials that often outnumber our own strength. 2 Corinthians 12: 9-10 says, “And He said to me, ‘My grace is sufficient for you, for My strength is made perfect in weakness.’ Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.”

My mom is near the end of her breast cancer journey, but I’d like for those who love her to continue to stand strong with her. I don’t feel like I’ve done nearly enough to support her through the entirety of her health setbacks. Even I, who has an empathetic understanding of what she needs during these times, have struggled to know what to say or do.

Just because someone doesn’t reach out for help, doesn’t mean they don’t need it. Just because they don’t share how hard it’s been, doesn’t mean it hasn’t been hard. And just because they haven’t been around, it doesn’t mean they don’t need you.

Her breast cancer diagnosis last year has even shaken my own faith. I often ask why there cannot be a light at the end of the long, arduous tunnel. She certainly deserves it. But that’s why it’s called faith.

Faith is a belief in something not always understood. Having faith doesn’t mean you somehow have the inroad to healing, health, and happiness. Having true faith can sometimes be trying. In the book of Malachi, the Bible speaks of Jesus as the “refiner’s fire.” What can try to destroy by fire, He uses to strengthen and “purge them as gold and silver (3:3).”

If you see my mom, tell her she’s His treasure, she’s doing an amazing job or just give her a hug. You can say a lot by not saying anything at all. Keep her in your prayers. I’m not going to stop praying for complete healing. I’m proud of how hard my mom has fought over the years and I feel absolutely blessed that she is my mom.

*d*

Confessions of a Special Needs Mom

~ crossroadtrippers ~ Leave a comment

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When my children were born, I wish I was also handed a guidebook to each one. “It’s a boy and here is the complete guide to (insert child’s name here).”  The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child. No doubt my special needs child would need at least three manuals. One for his primary diagnosis, one for autism, and one for epilepsy. I would also need some additional emergency booklets labeled, “What Kind of Seizure is This?”, “Why He Won’t Eat,” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist. Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my special needs child. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard to for me to be honest about the mistakes I have made as a parent.

I have made assumptions on the behalf of my child. There have been times that I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist that he does something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.

I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know that I am strong enough to handle whatever might happen.

I have underestimated his abilities. Sadly, I had already determined that he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations and he can independently write his name.

I have played out his worst case scenario. Instead of thinking that he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can but again, I should not set limits on his potential.

I have distanced myself from him. I know this is normal but I have taken his outbursts toward me personally. I frequently forget that he is at the mercy of his disease and the side-effects of multiple medications.

I don’t always let him fight his own battles. I am guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.

I talk about him as if he isn’t in the room. This is something that I promised myself I’d never do. I can’t assume to know that he does not understand what I am saying. I have to be careful not to make him feel like we are not including him in conversations.

I have not always been patient with him. Patience comes with practice and I have had plenty of opportunities to practice it.

I also have failed to be consistent with the way I handle things. I have not always stood my ground when he demands something in an inappropriate manner.

He needs structure and I have not always provided it. Sticking to a routine is hard for me. I have three other children and my special needs son sometimes feels like two kids rather than one.  It is easy to get overwhelmed.

I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what is necessary.

I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.

I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.

I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase or we do a medicine change and he regresses. It is hard to keep trying when we have to keep going back to square one.

I have failed to see the bond our difficulty has formed. Adversity really does strengthen a bond. We have been through a lot together and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.

I have been a “helicopter” mom. There are times that I would sit on his shoulder if I could.

I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t raise a special needs child. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.

I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.

I have to keep reminding myself that his age on the outside does not match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.

I am overly emotional. I know it is hard for other people to understand why it is a big deal when he independently wrote his name or put together a complete sentence but it is for us. Learning is often an uphill battle for him and we celebrate his victories.

My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly, that may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means that I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder, and give him the best of me.

*d*