“We’ve made it to 2022.
We were so hopeful for 2021, and in many ways, with COVID still raging its ugly head those hopes were dashed. I’m not sure if we should celebrate 2022 or spend time in fasting and prayer pleading for deliverance. Whatever 2022 brings, it will likely be unexpected and both heartbreaking and joyful at times.’
Read more..
Yesterday, I spoke via Zoom to students and medical professionals from the University of Tennessee. The topic was, “What is it like raising my child with special needs.“ This is something I volunteer for regularly because it is so important to me that these young medical professionals have a small understanding of what is going on in the lives of the patients and families they see.
One of the questions I was asked was, “What do I do to be able to make it through the really bad times.” I thought that this was a really good topic for discussion here. Because if you have a special needs child, you deal with some really heavy things. Things that if you begin explaining to people who don’t experience things similar, will start slowly backing away and have a look of a deer caught in the headlights.
Our lives are different.
But we can still find beauty, peace, hope, and love even in the midst of the heartache and storm.
So what do I do that helps get me through?
My number one reliance is on God. When I reach that point where I can’t carry on, he has ALWAYS been there for me. He carries me through in sweet and miraculous ways. Like the time he actually sent someone to clean my bathrooms. I’m not making this up. He sent someone to do my most despised chore of all when I was at the end of my rope.
Finding, and making sure that I have things that bring me joy in my life is another thing that I hold tightly to. Fresh baked anything will always put a smile on my face. A good book, or British TV show brings a sense of calm to my soul I really relish. Playing or singing music, working in my garden to grow things of use and beauty. It makes me feel like I’ve really accomplished something and my soul rejoices in the beauty of what I have done.
Hot, long baths. This is my staple. When my children were small my husband had a very unpredictable work schedule. We also had very little money. Things people would think of for self-care, like going and getting a massage, shopping, girl’s nights out and vacations were very rarely something I could pull off. When you have kids like ours, even if you do have the money, finding a babysitter can be extremely problematic. So as soon as my kids were safely asleep I would grab a book and take a steaming hot bath. Water cools down? No problem, just add more hot water. I’m not sure I could have made it through if it weren’t for those baths. I have been known on occasion to take 3 hour baths.
Another lifeline was finding other people who were experiencing similar things. Parents who also had special needs children who had their own brand of unusual. One mom I know wore a football helmet every time she got in the car to protect herself from things being thrown at her while driving. I’m sure there was more than one second glass as she drove the freeways to and from appointments. But this is the kind of different we live in. Knowing that there are people out there that get why we do what we do, and can even top our story? It’s a God send. These are your people and your kid’s people.
So if you are wondering, “How can I make it through another day of this?” Try a few of these out. They helped me a lot.
A universal need.
That’s what my social work classes call it. The human need to be heard, seen, and known. It was a central feature of my first grad school class. It’s something that has been in my thoughts a lot over the past 7 weeks. I’ve talked about it with my Mom, my friends, and taught a lesson about it at church.
And here is what I’ve found.
It’s true.
We need to know that someone, somewhere knows the real us. That we are seen for who we are. That our wants, needs, and desires are heard by someone.
One of the hardest parts of living through the pandemic has been a disconnect from the ways we usually get those needs met. Friends and family have had to social distance. Events and celebrations were canceled. I met with the sisters in my church and we discovered that all of us had been feeling very alone. We felt like no one understood us. Many had felt that maybe church wasn’t the place for them anymore, they were isolated and felt like they didn’t belong.
I watched as everyone drew a huge sigh of relief to discover that they weren’t alone. They hadn’t been the only one person thinking these crazy thoughts. They weren’t the only one struggling to find a way to meet these needs. Our hearts ached as we listened to our sisters tell their stories that we didn’t know were hiding beneath their pasted on smiles.
So we made a plan.
It’s just in its beginning stages. But we realized that somehow, some way, it was vital that each of us felt heard, seen, and known. We made plans and commitments, both individually and as a group, to do even just one percent better at reaching out to each other and checking in. Because if we all did one percent better, that one percent multiplies like compound interest.
It is a couple weeks later and I have reached out to a few women who were on my mind. Nothing earth shattering has happened, but they now know that someone, somewhere was thinking about them, and if that helps them feel even a little less alone, I have succeeded.
I have seen your heartache. I know the person you are. You are people I dearly love, who I know have hearts of gold.
My heart cries out for you because of what you have been through!
This one has a child who is transgender.
Another was sexually assaulted by a man in authority and then told she deserved it.
Yet another, questions the very existence of God because of the many trials that they have gone through because why would a loving God put her through that?
Another just never felt close to God and no matter what he does, he feels nothing.
Oh, how my heart bleeds for you all!
I see your pain and anguish.
I don’t purport to know all the answers. I wish I did. I’ve had my own path to walk with things I have had to plead for help and understanding.
My path hasn’t been yours.
But with everything I have been through, with the answers I have found, this is what I know:
God knows the answers.
And even more than that, he understands.
I think one day when we are able to have a conversation in person with him, he’s going to clear up a lot of confusion for all of us. He’s going to know that one person dealt with life long depression which made it extremely difficult to feel his presence. He’s going to take that into account.
He’s knows the horrific experiences you went through and the effect they had on you. That you were blamed and told you deserved it. That for your own health you had to separate yourself from the church. I believe he has compassion and love for you and he’s going to understand that you did the very best you could.
Sometimes we get so caught up as Christians on things we think we are supposed to do, that we forget the core principal of the gospel of Jesus Christ is love.
We forget that those who have made different choices than we have, deserve love and respect.
We want to grade someone else’s sins greater than our own, and regard them as less worthy. But we don’t get to make that call. Only God does.
So when all is said and done, and judgement is given, I think we’ll see a lot more of those people who left the church, unable to walk our traditional ways, with God. Even if I’m wrong, God says to love him and love others, so I’ll keep walking that path and keep reaching my hand out to you in friendship.
Just because you left the church doesn’t mean God, nor I have to leave you.
So we’ll be right here loving you.
“The first story I’ll tell you is that of a single mom. She recently discovered that her daughter had serious medical issues. All of her sick leave and vacation now go to time off for medical appointments. She has enough for this year, but next year, she will likely burn through that quickly. Vacations will now be a thing of the past while she desperately tries to balance working, being a mom, and the care of her sick child. She is lucky. She has worked with the company she works for, for over a year and therefore is eligible for the government program of FMLA (Family Medical Leave Act). This act protects her job and ensures she gets time off- though unpaid, to care for her child.”
Read more…
My husband is away right now studying to become a EMT for his work. Something that normally takes 6 months to do, his job is squeezing it into 2 months. That’s a lot of medical info to learn in a short time.
The night before his first test we were on the phone and we did a couple of his practice tests together.
I discovered something.
I knew most of the answers or could reason them out. I’m pretty sure I could have passed his first test without studying at all.
Earlier in the week I was out to lunch with friends and one of the woman’s sons has recently had to have an ultrasound on his thyroid. Another woman’s child had to have X-rays on her torso. We were talking over their children’s results, and I was explaining some of the things.
I’m no doctor or nurse. I don’t begin to claim to give any medical recommendations. However after so many years, and hours upon hours in doctor’s offices, therapist’s offices, and testing facilities I’ve found I have picked up quite a bit.
If your child has to undergo X-rays weekly, then biweekly, and then monthly for an extended period of time, you’re going to start knowing what to look for. Because my son had had so many X-rays as a small child of his trunk with his gastro intestinal problems, I knew what I was looking at when we xrayed him to see how bad his scoliosis was recent. I didn’t know what the percentage of curvature was, but I knew where to look and what was what on the x-ray.
So I’m going to call all of this hard-won knowledge “lemonade”. All those lemons of medical issues for myself, and my family, has brought knowledge I can put to good use. Both for myself and others. I really believe that all knowledge gained can be put to good use.
As a mother,
As a person,
Am I allowed to fail?
Just once?
Only in one area?
Only on Tuesdays?
What are the rules?
Can someone please tell me?
I thought when we made it successfully through a school year last year, we were okay, despite the masks. This year, we made it 2 weeks into the school year before the High School shut down to quarantine all students.
Meanwhile, I’m back at work for the first time in 12 years and I’m getting emails from teachers complaining because my child isn’t logging on to the Zoom classes. He hasn’t had access to the internet except for school all week, but he doesn’t seem to care.
This week I have failed as a mother.
My child hasn’t gotten dressed and showered on time. Some days, I’m not sure he showered. His version of an essay is one sentence with zero punctuation this week. I’ve only looked at his work a couple times to check that he has done it. I work all day and have been working overtime to deal with our company’s response to COVID, and that is taxing. I’m single parenting because my husband’s away for a few months with this job undergoing training that is extremely stressful for him.
And so, I failed as a mother this week.
My kids have raided the fridge, wandered around in clothes that I’m not sure when they were last washed, with my son skipping school assignments he will have to make up later. Meanwhile, I’m getting upset texts from teachers and I might have bought all the Snickers bars from the vending machine at work.
This week, I failed as a mother.
But there’s always next week.
“I was recently talking with another mom who has a child with mental health issues. While talking she used the term “emotionally held hostage.” Those three words struck a cord with me because so often in the special needs, disability, and mental health worlds it can feel like we are being held hostage. By our children, spouses, parents, and even ourselves through our own illnesses.”
Read more…
“And so I sit here, trying to understand that because my life is not filled with trauma causing events, and has really calmed down in a lot of ways, that it makes me feel like a fraud. As mental health is my chosen field to study and eventually work in… This makes me want to dig into this further.”
Read more…
“Right now I am in a class for Psychological Pharmacology and I have never worked harder on any class in my life. I am not doing well. It’s my last semester so I can’t drop the class if I want to graduate. Last week I spent 6-8 hours a day studying and going to class just for this class. It’s affecting my work for my other classes.
And it’s affecting me.”
Read more. . .
