Chronic Illness
Watchful Waiting and The Special Needs Mom

Watchful Waiting and The Special Needs Mom

If you know what watchful waiting means, you are way ahead of where I was just a year ago. Watchful waiting for the special needs mom an entirely new territory for me. This is our experience.


When my youngest son was finally diagnosed by his immunologist, I was so relieved. 

Years of unexplained symptoms, pain, and unknown side effects had brought a host of accusations.

He is throwing up to get your attention. 

Part of the problem is you coddling him. You are giving him the wrong kind-of reinforcement for these behaviors (aside: If you are a doctor, vomiting 8 times a day and constant diarrhea should NEVER be called behaviors).

We may need to look at residential treatment to remove him from your care for a while. You seem to be making things worse, not better (aside: My worst day as a mom, by far, ever – it’s hard to even type the words here).

It took one simple blood test to prove something was actually physically going on with my son. One blood test allowed us to see the immunologist and the pieces fell into place. 

He has common variable immunodeficiency.

Yes, he also has other diagnoses that could lead one to believe that he was somehow anxiously making it all up, and that I was somehow enabling all of it, but the truth is, the experience of being blamed for my son’s suffering left me traumatized and scared.

Having this diagnosis felt like protection. It was a relief.

watchful waiting and the special needs mom

What I would soon learn however, is that having a diagnosis did not mean there would be a way to treat his medical problems, at least not initially. 

CVID means he has less and less antibodies to fight infections in his body. For my son, this meant constant, relentless gastrointestinal infections. It meant more and more food allergies developing as his body struggled to cope with the onslaught of one illness after the next. 

But it did not mean treatment.

His immunologist explained this course of action.

He has this. It’s official. But it is not so bad that we can proceed with intravenous immunoglobulin therapy (the only known treatment). I know it’s hard, but it’s time for “watchful waiting”.

 

Watchful waiting is officially defined as this – 

Watchful waiting (also watch and wait or WAW) is an approach to a medical problem in which time is allowed to pass before medical intervention or therapy is used. During this time, repeated testing may be performed. Related terms include expectant management, active surveillance and masterly inactivity. (from Wikipedia)

My son defines it as this –

I am sick, all the time, but not sick enough all the time for anyone to help me. I have to actually get more sick in order to get help.  (He 100% said this out loud to the immunologist when she explained the term. I was proud of his self-advocacy skills… and in tears at his reality.)

I define watchful waiting as this – 

I need to do the best I can for this child, knowing that he is ill and that there is really no way to treat him. I must prepare myself for this getting worse, before we can help him feel better.

 

Watchful Waiting For The Special Needs Mom

It’s been a really, really long few years here. My son’s childhood is essentially one giant mess of all of this. 

Some days, I worry about his quality of life and life expectancy. Other days, I worry about his reading ability and how “behind” he is. Most days, I just try to focus on what is right in front of me and not play out all the what if’s.

I am pretty sure, when you are a mom in the midst of watchful waiting, it’s your only option.

In some ways, maybe motherhood is always about watchful waiting.

We never really know how it will turn out. We never really know what to expect, or when how our child’s growth and development will unfold.

As I consider it, it seems true.

Motherhood essentially always involves watchful waiting.

watchful waiting and the special needs mom

Next week, a nurse is coming to our home to teach me how to give subcutaneous infusions to my son.

His season of watchful waiting has come to a close.

It is being replaced with a mixture of fear of needles and an acceptance that once we start, he will need these infusions every week for the rest of his life. 

And, although we are trying not to get ahead of ourselves, we are replacing watchful waiting with hope.


For More Encouragement And Support:

The Constant Turmoil of Special Needs Motherhood

We Need To Stop Blaming Moms For Their Children’s Anxiety

I Don’t Want To Be A Warrior Mom, I Just Want To Be A Mom