Monday, August 29, 2011

"Hi Ms.Carlton"

One would think that a simple phrase like this would be met with a smile and feelings of joy. It should come with these things, people like to be recognized by name.  I heard it not once, but twice in the hospital cafeteria. Instead of feelings of welcoming I felt a knife in my heart. I don't want to be known this well by the doctors, especially doctors that haven't seen my daughter in months.  Dr.High  was greeting me by name. I recognized him but I couldn't actually tell you the last time he was the head of the CHIPS team treating Heather Riley, its been a while. I only remember his name because, well, okay, really? His name is Dr.High. How can you forget that?

 You see Heather Riley is the little girl that just about everyone knows. She has been a patient at Levine off and on for years. The general peds have all treated her at some point.  CHIPS A-D; she has been on each team at least twice some multiple times the same month- usually she is CHIPS team C. The nurses on the 8th and 10th floors all know her, child life has "her stuff" ready for her when she gets there. the transport teams, very few people don't know her at this point. That includes the air care and the county squad. I can go into the cafateria after being away for a month (are we really ever away that long?) and no matter which line I get into they know what I want. I have been eating the exact same thing for several years. When I go to pay I don't have to open my boxes anymore. The girls know what I have. Chicken tenders (except for the period of time when I avoided chicken because of the Nugget mishap) Salad and tea. always the same.

 Moments after I exchanged brief words with Dr.High I was putting my lunch into a bag and gathering my condiments, I found myself rubbing elbows, literally with Dr.Eaker. She is the CHIPS doctor treating Heather for this particular admission. Of course she knows us. She frequently treats Heather. We had just seen her moments before. I couldn't help but wonder if she followed me downstairs. I had just told her I was going downstairs to get lunch.  She joked (or was she?) that the only weekends she works Heather is in the hospital. True, it seems that she is on the schedule to work the weekends before Heather has IVIG each month. That seems to be the time that the status seizures are hitting.. She did let me know she is working next weekend and didn't want to see us back. As we both shuffled our stuff into our respective bags, we laughed.. yea, no problem. We had a brief private conversation and that was it..

I walked away...

I am  a little tired of my child dragging my TOMS to the hospital all the time. I suppose I can't blame her. Its this monster we know as Lennox Gastaut syndrome. 

This made the fourth status seizure cluster/status seizure that was severe enough to force Heather's nurse to call EMS. I can't justly say that it was the fourth status seizure because she has status seizures frequently. We are just able to treat them at home. Thank God for that. 

So this whole month of August has put me into a funk. Here it was, a new beginning for us all. This was suppose to signify a wonderful new start but instead I am faced with a massive boulder in the road. 

I need steel toed boots and a pick ax , not TOMS and a book bag.

Heather Riley was discharged from the hospital Saturday afternoon, less than 24 hours after being admitted to the hospital. I was relieved, we were looking forward to Mass on Sunday. It was sign up day for Faith formation. This will be Heather Riley's first year going with the group. We have included it in her homeschool program up until now. I want her to to be with other kids. This is a beautiful opportunity for her.

I was feeling really down Sunday morning when I got up and discovered that I couldn't take Heather Riley to Mass, then Sarah refused to go to Mass (again) I wanted to kick the entire month of august. I wanted to go sit somewhere and sulk  for the entire day. Instead I put on my favorite jeans, a new shirt and my nicest TOMS then Brittany and I went to Mass. As I knelt in prayer and reflection there is a saint who came to mind, her feast day just passed on the 27th. 


I get so tired of the fights about not going to Mass. Some of the things are said and argued about are not worth repeating. All I can do is pray. Pray like St.Monica did for her son Augustine's conversion. There are many things I pray for, I don't even know where to start sometimes, times I don't  know what to pray for. When that happens I just have to say "you know what we need, I am overwhelmed" Other times I can't shut my mind or mouth up. I stop and wonder if maybe our Lord and the saints wish I would go for the shorter or even a preprinted  version. 

In all seriousness, pray and pray some more. You can never pray to much, or to long, remember even if you don't get what you ask for it doesn't mean your prayer was ignored. It just might have been a "no" or a "the time isn't right"

Prayer is my steel toed boots and a pick ax, the best part about it? I can pray in my TOMS with my book bag on my back, no need to trade them in like I first thought. 

I am getting a lot of  "no" or "not right now" responses and it is getting frustrating. 

Especially since it is concerning Heather Riley and her seizures. 

I am going to be very open and honest so if you are tender hearted and can't handle my sometimes blunt nature stop reading now.... 

There have been times that I fear she won't live in the last month. I sat in Mass and thought about it more than usual. This month has been bad, and very frightening. 48 hours of seizure activity almost non-stop is not good. I can't help but worry and wonder how long her body can keep up with the seizures. Not only the seizures but the treatments. I thought about the what if's,and for a fleeting moment had thoughts of her funeral. It was horrible. I wanted to be sick. The thoughts and images were in my mind and I had a hard time shaking them. Fr.Rossi was talking about suffering. He mentioned the loss of a child, that was part of what brought my fears out to play. Of course those fears were already dancing like devils in my mind.

In Matthew 16:24 Jesus tells his Deciples  "Take up your cross and Follow me"

This is our cross, I will not let doubt fill my heart and soul again like it did when she had her first seizure. It was shortly after I settled into my place at St.Leo's that she had her first seizure. Everything Fr.Rossi spoke in the homily spoke straight to my heart on Sunday. I dropped my cross when Heather Riley was little. I wanted no part of a God that would welcome me into his family then allow this to happen. It wasn't fair or right.There was no God. Only coincidences and a universe that science could explain. Bad things happen, that's life.

I was so wrong, it took me a while to see it. God was always there watching over us.

God was keeping my family safe in every situation, He was showing me the way back to His house. When I returned my faith would be stronger than before. It is only because of the time away though. Everything happens for a purpose, everything. He has it all in his hands...

"Hi Ms.Carlton"

Yes, that phrase caught me off guard when it was said with a smile by a doctor in the cafeteria. I want to be like any other parent when it comes to those situations. I don't want to be known because my child is in and out all the time.

Seizures are stealing her from me, piece by piece.That "hi" and the conversation I had after with Dr.Eaker both made me think about so many things. My heart was again shattered, shattered after I had just put all those little pieced back into place from the last time.

The seizures are stealing her...

I know it. I see it.

No she isn't dying.

Thats an extreme statement.

she is regressing, a pretty big difference.

WHO she is is dying though. The Heather Riley we knew 3 years ago has died, this is a different Heather Riley. I often wonder who she will be in 3 more years.

Dr.High had no way of knowing that his "hi" would elicit the kind of emotional response that it did, the power of our words reaches much farther than any of us realize.

 Even what you may think is a simple "Hello" can be far from simple.


Carrie said...

I should have stopped reading when you warned...
We have not been where you have been, but I can relate on some level. People often comment on my daughter's sweet, mild mannered, somewhat meek demeanor.... She has a beautiful soul, unlike many teens, but this has come at a price. Some say how lucky I am to have a child like her... how I have done such a good job raising her.... As much as I have put into shaping her into a good person, I often find my mind wandering... How much of her childhood has these ugly seizures taken from her? How much of a role did that play in who she has become? She should not be this mature at this age.. She should have learned to tell a story or 2 in kindergarten... She should have noticed the little boy picking on her... Knowing that she was oblivious makes me wonder how much else she missed.
She has just recently began to recognize some post-seizure activity. They are back, and once again, we will play the cards we were dealt, but we won't play fair this time. We are gonna hit this head on & salvage what we can of her precious childhood.
God bless you Denae! And thank you... It helps sometimes just to know we are not alone. We will continue to pray for you & little miss Heather Riley.

the vintage wren said...

Hi Denae, it was so nice to meet you yesterday. You are so inspiring, and your family is precious. I can't wait to meet them all. I'm so sorry to read about your struggles with Heather Riley's seizures, It's so hard to watch our children suffer. We have friends whose daughter suffered with seizures also, they recently had a surgery to remove the half of her brain causing the seizures (I'm amazed that they can do this) she is now seizure free and within a few months the other parts of her brain compensated and she's now perfectly fine. I don't know details of Heather Riley's situation obviously, but I pray that there is an answer for you soon. My uncle also suffered with epileptic seizures from childhood, he also had a brain surgery that eliminated his seizures...praise the lord that these things are possible. I will keep your family and Heather Riley in my prayers. Hugs-Carrie