Our Worst Fears

[Donna Thomson]

A new blog post about our caregivers' and parental worst fears: http://www.donnathomson.com/2012/07/...orst-fear.html

[funnylegs4]

Great post. I think it is always a persons worse fear to lose who they love most.

[Earth Mother 2 Angels]

((((((Donna))))))

The memories, which haunt us. That telephone. From the first time it rang with unsettling news about Nicholas, it became a trigger to set your heart beat racing and your blood pressure rising at any given time. From his first seizure to his most recent choking incident, you worry whenever the phone rings, and Nicholas isn't beside you.

If we took a poll, I strongly suspect that "telephone" would be the #1 answer among triggering the worst fears in parents of special needs children. If it isn't a call telling us that our child has had an accident, or is lll, or is seizing, then it's a phone call with test results that we've been anticipating. We become conditioned to expect the worst, whenever we hear the phone ring.

When I was working outside of our home, my company's phone system offered 2 rings to signal an external call. Anytime that my phone rang twice, I just knew it was about one of my boys. That conditioned response with heart fluttering, BP rising, palms sweating took a few minutes to dissipate on the rare occasions, when the call was not about my boys.

Now, the only time we are separated from Jon is when he's hospitalized, so of course, that conditioned response immediately kicks in when the phone rings, when we're at home. Or the cell phone rings, while we take our break.

I understand what you were experiencing as you wended your way through traffic to get to Nick. That frantic frustration. And then the relief to find him all right. So many emotions and assaults to your physical being in such a brief time. There is no question that these are stressful moments in our lives, quite specific to the life of being a care giver.

After such a fright, we have to re-train ourselves to settle down, to keep functioning, to not be waiting for that ominous phone call.

I've always felt like two people. The woman I present to the world ~ "I'm fine, thanks. I've got it all together." And the woman I am ~ "I'm falling apart inside, but I'm holding it together on the outside."

This is the result of facing my worst fears, and experiencing my worst fears as reality, during my entire adult lifetime. As I age, I find I am less inclined to pretend that I'm just fine, when a crisis occurs. My worst fears take the forefront these days, and I'm pretty aggressive about it.

We have absolutely no control over what will happen next. None of us. We can only do our best to ensure that all bases are covered and the best outcome for our loved one is the number one priority. We have to be proactive, not reactive, and we have to be in tune with every nuance and change in our loved one (child or parent, or other loved one), so that we can be the best advocate for their care.

That is an enormous lifetime undertaking, for which the majority of us are under (or not) prepared. We learn as we go as care givers. We put out fires one after another. Sometimes, we have to set fires to prevent new ones from occurring.

The only time I relax is when I sleep, and even that is disturbed by awakening and wondering how Jon is doing. And I know that he's likely okay, because Jim would wake me if anything was wrong with Jon. Still, I'm conditioned for something to happen at any time. Whatever it might be.

I don't distinguish between my roles as Caregiver and Mother, as I didn't between Caregiver and daughter, or grand daughter or niece, when I cared for my elders. My caregiving flows naturally from my love; it is organic and emotion-filled. And that's the place from which my worst fears emanate. A deep, abiding love, which never wants to let go.

It's a difficult topic, and you've opened my mind once again to reflection and acceptance.

This is the life we were given, the hand we were dealt. We just have to live it as well as we can, as honestly, fully, and lovingly as we can, and play our cards wisely.

Thank you, Donna, for exploring these places we may not always want to visit, but which are important to our wholeness and well being.

Love & Light,

Rose

[Donna Thomson]

Thank you, Rose and thank you for your wisdom as always which has fuelled my next blog post. I was looking around for another idea about something to write about today when I read your reflections about the 2 selves. That old 'I'm fine, absolutely fine, no problem!" is our worst enemy. "You always look so pulled together and fine", people say, including those who hold the power to put help in the home. Well, it's our dignity and our determination not to betray our beloved boys that drives us to look fine. How could we project that they are a burden? We can't, just can't. Yet, we MUST find a way to communicate to all who would listen that we are not fine and something that Eva Kittay wrote spoke to me deeply. It was that we mothers have a human right to mother. We deserve, as a matter of justice, to be the best mother we can be. And if our children's needs outpace our ability to meet those needs, then we fall short in being able to mother. I liked that framing and I'm willing to fight for justice on that account. Thank you for deeply understanding, Rose. By the way, today I met with an OT in the morning and a speech therapist in the afternoon for Nick's swallowing. I think we'll get there, but I wonder if he didn't suffer an laryngial (sp?) spasm. I'm going to google. Anyway, he choked on a potato chip during the assessment, so I guess that's good. xoDonna

[Earth Mother 2 Angels]

(((((Donna))))))

Did you mean to say that Nick choked or didn't choke on a potato chip? Since you said it was "good," I'm going with did not choke on the potato chip. ? Yes? No?

I agree that we all need proper support from any resource available ~ government to charitable ~ to keep our families in tact and to allow us to mother our children.

Some of my "jobs" for Jon stress me more than his actual careproviding. Like the mattress issue. I shouldn't be the one finding Jon a mattress, paying for it, haggling with the suppliers, who don't service it, and becoming a service technician. Some person, who works for an agency somewhere, be it Medicaid or a social service program, should be doing that, in consult with a PT.

My children aren't a burden and never have been to me. But outsiders, who say "I couldn't do what you've done," do believe that my children are a burden, because they would be a burden to them.

If I'd been asked whether I could manage the needs and lifetime care of two children with developmental and medical needs, before I gave birth to my sons, I would have probably said, "No way! I couldn't do that!"

Who among us ever thought that we would have a child with special needs? Or that we'd learn about medical procedures and medications and treatments and therapies to help our children?

I feel like I'm evolving all of the time to become a better mother to Jon. I can look back and say, "I wish I knew then, what I know now." So bittersweet.

I'll look forward to you next blog post, and I'm honored to be your muse.

Love & Light,

Rose

[Donna Thomson]

Hi Rose, Oh I just meant that during the assessment when Nick choked again ( not a serious one), at least the therapist saw what we were talking about. There's nothing worse when you can't demonstrate something that's been going on. Anyway, the original episode that sent him to the hospital was a choking episode, but because he seemed to recover at first and he did spit out the offending piece of chip, I am beginning to wonder if he didn't (from shock or the chip contacting the vocal folds in his throat), suffer a laryngeal spasm which can occur. It often occurs during intubation or extubation, but it can occur in the normal population as well. We have an appt with the respirologist in a couple of weeks and yesterday we had a multitude of meetings with the head honchos where Nick lives. So we're rewriting his care plan and making new emergency procedures. It's all good - we always learn from the emergencies. Anyway, I couldn't agree with you more about the side issues that are critical and infuriating. Having to fight for Jon's mattress is awful. I'm going to write to my friend today and my question will be - does the ADA give any rights of guarantee on health equipment to PWD? I think that's the essential right? Because what you really need is for the company to replace YOUR really good mattress immediately. Let me know if I've got this right. xoDonna

[Earth Mother 2 Angels]

((((((Donna))))))

Thank you for clarifying about Nick's choking. Yes, it is always best when a specialist can actually witness the problem, albeit, we don't want Nick in danger of choking. I think your idea about Nick having a spasm is a good one. Did the therapist agree?

Do you have any concerns about continuing oral feeding with Nick, or to limiting his oral intake to pureed or soft foods, like applesauce or pudding?

This is what we did for our boys, when chewing became a problem, and swallowing due to Dilantin gum overgrowth became an issue. A regular diet of pureed food. But after numerous aspirations, we stopped oral feeding altogether.

If Jon has the hiccups (or when Michael had them), we give a tiny bit of applesauce on the end of a teaspoon to cause him to swallow. He often opens his mouth for more, and it's heart breaking to have to resist giving him a bowl-full.

I hope that the visit with the respirologist (we call them pulmonologists) will be fruitful.

Rewriting the care plan sounds very good. Everyone on the same page. Yes, we do learn from our emergencies. But it's so sad that we have to have an emergency to learn these things.

As you know, Jon has a new mattress now, so the issue is resolved. By us. As usual. But the resolution is much better than the other company replacing the old mattress. The new mattress is constructed better and offers more features to support Jon. We also purchased it from a company, who we trust, and a rep, who we really like as he is our friend, who is also a PT, and they service their equipment 24 hours a day. So, it turned out well in the long run.

The problem is that there are no regulations on the DME and medical supply industry. That needs to change, but how that change occurs is the question. I would guess we'd need to get a Congressional rep to sponsor a bill and then try to push it through Congress. But that would take an advocacy group with lobbying power. Little ol' me and us cannot wield that kind of influence. Plus ... we see how interested Congress is these days in passing bills of any kind. Rather futile to fight it now.

Thank you for pursuing it for me. Someday, I pray, things will change.

Love & Light,

Rose