Proverbs 15:15 The Message (MSG)
15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.
With joy in my heart, I still struggle. Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.
Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise. Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.
I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again. I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.
He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no. He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.
So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.
I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.
And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver. He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring. Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.
Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine. I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.
I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.
The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.
May you know how much Jesus Loves You~right now~right at this moment and always.
Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith
Blessings until next time~Carlene