Me, Against the World

Have you ever had one of those days where you really just feel like it is you fighting against the world, where all hope lies in your hands, where you are fighting so hard you are ready to just let go and drop the load? It's been one of those days where I just feel like that last glimmer of hope is lost, that last spark of fight is gone. I am left emotionally drained.

When I got the text that started it all, my heart immediately sank. For a few moments, I was breathless, speechless--but so overcome with emotion. It took everything in me to fight back the emotions that had overcome my heart. I bit my lip so hard as to hold back what was inevitably coming. In my head, I kept repeating, "breathe, breathe, breathe--it is all going to be ok." And, yet, at this stage, I just don't know that it will be, or maybe I don't know that I have what it takes to make it okay anymore. It is me against the world.

The text message came through--one I had not anticipated or appreciated. The physical therapist texted me to get my opinion on reducing Brandt's services down to twice a month--this after having recieved a similar text from the speech therapist a week prior. It is all too much, and I have yet to reply to either.

How can I reply? What should I say? How should I feel? It is a roller coaster of emotions, but you have to understand the background to understand the circumstances.

First, speech. Brandt used to do speech weekly, After six months, we reduced services down to twice a month, and we have been doing that for the past nine months. It was a battle to keep those services, and now they are talking about dropping it all together. In theory, this should be a good sign--but it's not. They aren't cutting services because he is equal with his peers, because he is reaching the milesstones. They are cutting because he is showing "some" progress. Yet, he is still not where he should be.

But what do I do? Do I let it go because he is starting to aquire language, because he is catching up, because he is learning. Or, do I continue to fight because he is not reaching the markers when he should, because I do not want to lose the rate of progression we are making.

And, so, I say nothing. I ignore the text messages. Does this make me wrong? Does it make me a bad mother.

And, then the physical therapist chimes in with hers.

Brandt has been doing physical therapy once a week for almost two years. Yes, he is walking--but he doesn't walk like other toddlers his age. Yes, he makes slow progress, but on paper he has not mastered any of the goals or outcomes that were devised OVER a year ago. We are STILL working on balance, foot over foot steps, and walking with correct posture and position. He just, last week, kicked a ball for the first time, and he still cannot jump.

Two weeks ago, we were at the mall play area, and Darrin saw it. He saw all of the kids (many Brandt's age) walking, running, climbing, and maneuvering around the obsticles. It was the first time that I had ever heard Darrin mention that he noticed the delays. And, him finally saying this, further made me come to terms with all that is. After two years of fighting the battle alone, he finally saw a piece of what I see.

So, what is being proposed just sounds ridiculous. But, even more ridiculous is the reason behind the therapist's request. The physical therapist is not proposing to cut therapy from weekly to twice monthly because of progress--oh, no, She is proposing because of scheduling conflicts, and she doesn't feel that there is much more that she can do for him. I am sorry, but isn't that her specialty--her job--her forte?

And, so, another text message goes without a reply.

Every day my heart sinks and my spirit weakens a little more.I am defeated. I don't have answers. I don't know what to say or what to do. I am defeated. I have been fighting this battle for so long, and so often I feel like it truly is me against the world. So, I ignore. I know that is not a permenent resolution, but for now that is all that I have in me.

Never a Dull Moment

Well, just as we moved past the boot and get settled back with our old sitter, we find ourselves face to face with life's next little hurdle

Friday night, Brandt came to me, saying "ear hurt." Upon examining his ear, I saw it was filled with blood. I checked his hands, and noticed his pointer finger was covered in blood. Seeing his nails were long, I assumed that he'd cut his ear with his sharp nails. Immediately, I wiped away the surface blood with an alcohol wipe and cut his nails. As far as the inside of his ears, there was not much I could do; with tubes, he cannot have q-tips or fluids in his ears. I figured the rest would drain over time, so I continued with our nighttime routines and put him to bed.

The next morning, I laid Brandt on the changing station so that I could carefully examine his ear. Instantly, I knew we had a problem. Brandt's whole outer ear was covered in dark-red, dried blood. Again, I wiped away what I could, but I knew he was going to need more than just a wipe-down.

I contacted a friend, whose mother works at a local ENT, to see what she thought. I wasn't sure if he needed to go to the ER, or if a walk-in clinic could treat him, or if I was better off waiting until the next day to get him in with the ENT. Of course, Brandt's ENT is at Miami Children's Hospital so that was a dreaded response.

After getting a response from my friend's mother and talking it over with Darrin, we decided it was best if we went to Miami Children's Nicholas Outpatient Center. This satellite office is only two counties away, and it offers weekend hours. It also has his complete medical/ surgical history from the Main Hospital in Miami.

It was difficult for the doctor to see much in Brandt's ear. It was fluid-filled with wax and blood.  The doctor could not see Brandt's tube in the affected ear, but he indicated that it could have been covered with wax/blood build-up, or it could have become dislodged. The source of the bleeding could not easily be identified, either, because of all of the drainage. It could have been a side-effect for a severe ear infection, or it could have been caused from trauma to the ear (such as a scratch or from a fall). Either way, the doctor prescribed antibiotic drops. This would kill away any infection and help to drain any excess fluid out of the ear.

Oh, and upon the doctor's initial exam, he asked if I knew Brandt had a heart-murmur. In my head, I said "ah f*** yes," but I gave a polite reply with his history of the heart murmur. I told him we had a cardiologist clear him with an echocardiogram and an EKG. The cardiologist had indicated that his heart murmur was likely a side-effect of his iron-deficiency anemia. The only thing is, last time his iron-levels and heart were checked, his levels were gone and the murmur was not present. So, I am assuming the doctor's notation of a heart murmur is probably a good indication of his anemia being a problem again.

Crazy thing is, I was just telling Darrin a few days before that Brandt probably needed to have another complete blood count done. While out on a morning stroll, I thought his skin had a yellow-green tint to it--a common symptom of anemia.

So, put two and two together and make your own inferences... Think it is time to refill the ferrous sulfate and start treating the anemia again....swear, there is never a dull moment in the life of Brandt!