It would seem like most church people say “I’m too blessed to be stressed”. Well I’m here to be very honest & break that cliche, to tell you that I am indeed blessed and stressed.
For those who follow my blog, I haven’t written in a while, my life is complicated. And for anyone who’s new to the fragments of my life that I choose to share here, I am a mother of four adult children. My youngest has so many different health conditions ranging from life altering – life long – life shattering and it’s most definitely not what I planned when I started my family. It’s most definitely not what I envisioned, nor what I signed up for, however, I have been able to accept the things as they’ve come.
And here we go… I’m gradually approaching a milestone birthday where I’ll be a half of a century in years. I have been doing my best to remain consistent with an exercise regimen that I choose to use as my way to release stress. I have some of my own health ailments that I need to continue working through and sitting around doing nothing won’t help me.
I’m at a point of life where I’m truly self-reflecting as well looking ahead and I’m in a unique situation when dealing with what God has given me to handle. It’s not been an easy journey, nothing close to easy in fact, yet I will continue to press forward in faith with Jesus by my side, every single step of the way.
Raising a adult child with so many complex health issues is indescribable, incomprehensible, and very stressful, difficult, yet educational, humbling, and it has most definitely kept me close to the Lord.
When I became a mom, like most moms to be, I had a vision of how my life and my children’s life would play out as we all grew together. However, as life brought about many extreme challenges & life altering events, it led me to a brand new reality. It has me filled with thoughts of what his future will look like once I’m no longer able to care for him or if something happens to take me from this earth. Only God knows the order in which things will happen as we grow older together.
As of late, my sleep is disrupted by thoughts of concern, worry, and scenarios that I play in my own head. Most parents of “normal children” don’t have to think like me. I doubt they have to plan for someone else to take care of their adult child if they can’t anymore. I doubt they’re challenged most everyday with what I call “brain farts”, aggression, anger, and being yelled at, while in the same moments, you’re needed to assist your adult child with toileting, showering, meal prep, dressing, and caring for him with as much patience and love as you can, trying not to allow yourself reach that mental capacity where you’re tapped out. Left to feel like you’re in an abusive relationship at the end of the day, feeling trapped, isolated, and feeling hopeless, misunderstood, and with little to no outside support. Surrounded by few people that truly lack the same experience yet offer advice that makes you want to slap them silly.
Don’t get me wrong here. I absolutely love my son. I love him with every fiber of my being and he has my heart. I love all the things he’s taught me about life. I love him when he’s both good and acting out. I love him through all the tough times. I pray for him every day and every night. I realize he is my gift from God, even when he isn’t nice to me. He is both precious to me, and a pain in my butt. He has a lot of good qualities about him. He is generally a very sweet person with most people. He is my social butterfly and he has a true love for God. I wouldn’t change who he is, but I do often wish I could remove the trauma that has left him with a traumatic brain injury and causes his behaviors, moods and thoughts to go all the way bad. This is in addition to all of his other diagnoses and complex medical health conditions.
As a believer in Christ, a person who prays faithfully every night, one who believes in God’s holy word, one who’s been tested, tried and overcame a lot already, I just find myself asking what’s next? What’s next, when prayer doesn’t seem to be enough or seems to be working anymore, when medications don’t seem to be helping to bring him back down to his normal baseline, or when the only few options I’m faced with are the ones I cannot find myself being able to choose. I just want, I just hope for a miracle however it comes. I truly want to be able to continue caring for him in my home because I don’t want to put him in a home. Why can’t options be packaged differently? Instead of how they are? If you know, you know, if you don’t, you don’t.
As I’m getting up in age, so is he. He’s bigger in size, he requires a lot of personal care. I have some of my own health concerns that I’m trying to manage and work with, while still trying to handle his needs. Thankfully I have a life partner who has been here to help me along this journey. So I’m not a single parent. But the thought, that thought, you know… Just thinking about the future as we all age. Thinking about where he’ll go? Who will take care of him just like me or even better with patience, kindness, care, concern, and have compassion with him, even if he becomes aggressive. Where will he spend those days of his life? Will he be able to live in a nice facility? Will he be able to cope and thrive with a new environment where we aren’t there? Will he need to be in a group home, adult family home, supported living, skilled nursing facility? What will happen to him if he does become aggressive with staff in a home? Will they tolerate him and work with him, or would he wind up being sent to an inpatient facility, which would be extremely beyond his comprehension? Will his routines be honored and allowed to remain in place? Will they offer his favorite meals or would they serve him a bunch of frozen, instant junk? Will they stay on top of all his doctors appointments and keep his medications in order? Will they handle his care promptly or will they neglect his immediate needs? I’ve heard so many mixed experiences from others that I have concerns. I won’t expect any of his siblings to carry this cross once my husband or myself aren’t able to continue caring for him. I cannot expect them to take on this sort of responsibility as they will likely develop their own lives and one day have a family of their own. Now if one of them should decide to step up to the challenge, and it will be a good fit, then I’ll be all for that, rather than him going to live with strangers for long term care.
Life has been very touch and go lately and I just want the days back where he was able to compromise. He was happy all the time, and he was a lot more communicative without the anger, aggression and yelling, and sometimes hitting.
I feel like I’m grieving the loss of a life that I never got to experience. I wake up everyday hopeful that this will be the day when he will be calm, able to talk to me without being yelled at, cooperative and more easily going. So many things are different now. Nearly every holiday, I dread, not to mention my birthday. We share the same birthday, yep I had him when I turned 26 years old. Initially, it wasn’t like this. But now holidays are very stressful. Birthdays are too. Heck, just conversing with others in front of him is stressful and there’s so many trigger words to try and avoid. And there is almost always that one person who walks up and says that one specific word that sets him into a “brain fart” and then we have to endure his attitude and behaviors to follow. While most people see him one way, they haven’t gotten to see his other side.
I’ll end my article by saying this, I’m blessed and stressed at the same time! My life is complicated. But I also realize that it’s God ordained, and I am chosen to walk this specific journey As-Is.
To my followers, Thank you for being here. Thank you for taking an interest in my journey as a special needs mom. Thank you for following all of my articles. Thank you for allowing me to be transparent, honest, and remaining true to who I am. Thank you for all your support and positive feedback.
Lastly, I usually don’t ask much of anyone, but tonight, as I sit here writing this, with a bothered spirit, and tears in my eyes, pain in my heart, and trusting that God will see me through, I’m asking for anyone reading this, to lift my family up in your prayers, prayers for continual strength to us as parents, protection, and endurance, and deliverance, healing and change for our sons behaviors, thoughts, feelings, comprehension and brain development.
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