Rollercoasters

I am grateful and shocked by the amount of folks reading this.  I have already been contacted by complete strangers, going through the same things with their children.  They have shared with me their diagnoses, in hopes it might help lead us to some answers for Toby.  One person's suggestion was so similar to what Toby's symptoms are, that I called his doctor and asked to consult with a geneticist.  Ask and you shall receive?  It is possible for this to turn into a literal translation too?  Just 4 days after posting my first blog, could a complete stranger lead us to the resolution we have been awaiting?  What a wonderful gift God has given us.  I'm certainly not getting my hopes up, but its reassuring knowing there are other parents in the world that struggle in the same way my family does.  That they go on, and their children are much older than Toby, and happy.  Additionally, I have received notes, texts, emails.  Although this outreach may seem to be small gestures by you, they are very powerful and restorative to me.  Even if my experiences don't match yours completely, to validate that every parent feels, senses, cares the same way we do; It feels amazing.  So, we thank you, from the bottom of our hearts.  

5 months old - 12 lbs - Newborn Clothes

Toby LOVES his Daddy

17 months - 6 month onsie

While Toby was undergoing his procedure the other week, a good friend that I used to work with at Cincinnati Children's came to sit with Parker and I to keep our thoughts distracted from the negative places they wanted to veer to. We got caught up, as it had been all to long since we had seen each other, and he relayed to me stories about his children, and a surgery that his son had had.  It was just a routine tonsil removal, but in the weeks and days before the day it was supposed to take place, more than one person had shared with him stories about a child they had known of dying while undergoing a routine procedure.  Specifically, the same one his was about to have.  We both were in agreement - Why on Earth would someone mention a story like that to a parent when their child is about to go through a routine surgery?  What good could possibly come from sharing such information?  Do these people have a screw loose somewhere?  

Are they not thinking before the words come out of their mouths? 

I don't want you to be worried but...... These were the words that began the conversation started by Dr. Excellent's scheduler.  She phoned me the day after our GI nurse explained that Toby's blood work showed abnormal, decreased CD levels.  This type of blood cell, its expressed, is part of your immune system.  When you have a diminished immune system, your body isn't able to fight normal illnesses in the way a healthy person's would.  There could be a vast number of explanations for this to be.  Since the start of Toby's abnormalities appeared, all signs have been pointing to an issue with his immune system.  There are over 80 different auto immune disorders, many of them sharing the same signs and symptoms - making a diagnosis even more strenuous.  It had also been expressed to me when the immune system gets confused, the intestines are one of the first places it decides to attack - making the inflammation found there thought-provoking. 

"Toby's Dr has asked for Dr. Excellent's first available appointment"
First cause of Dismay

"I don't want you to be worried, but your appointment is scheduled in the Cancer and Blood Disease Institute"
Second cause of Dismay

I must have not said anything.  I don't recall.  Because she spoke up again, as if she were trying to fill the awkward silence with any words to make it alright.  

"Sometimes people don't know that their appointment is in this clinic when they schedule over the phone; I just wanted you to know so you wouldn't be scared when you got here."

While I truly appreciate her general concern, she must not have children, I immediately thought.  How in the world would she be able to say these two sentences back to back..... I don't want you to worry AND you have an appointment in the Cancer and Blood Disease Institute.  A first available appointment, by request, for a renown doctor.  Surely she wasn't thinking about the words that were coming out of her mouth.  I paused my viscous thoughts to get a grip.  Calm it down, I said to myself, this woman is here to help you. She is on your team.  Your worries are between you and God, not this sweet girl on the phone, doing the best she knows how to prepare you for whats about to come.  She went on to inform me I was being assigned a case manager, to help us with Toby's "issues".  This person, whom we would meet at our appointment, would be our liaison now for our health care related concerns with Toby.  This person will be our go-to resource for questions.  They will help us along this journey.  I hung up the phone, texted my husband to call me, and sobbed.  

Toby 15 months - 3 month swimwear -  I'm 7 months pregnant with Lyla

Why am I getting the sense that something terrible is about to happen?  I feel like I'm going up the first steep hill in a roller coaster.  You know the one.  The biggest one there is.  Your zooming about, enjoying the ride, then you come to a screeching halt and slowly a crank jerks you up, gradually pulling you up to tippy top, yanking you along the way.  I feel like when this visit happens, I'm going to plummet.  I feel that same hollowness in my stomach, the one that presents itself immediately as you topple over the edge.  I feel that all the time.  It doesn't really go away.  Please God, don't let this diagnosis be one that shortens his life.  Please God, keep my son wrapped in your arms.  I beg of you, let this affliction be one that can be treated.  If Toby doesn't grow anymore, for the rest of his life, please let this be OK as long as he gets the chance to live.  

I've asked numerous times, to his pediatrician and to his specialists, is there anything life threatening Toby can be diagnosed with that I should be preparing myself for.  Each time they explain that they feel the answer they are searching for would be treatable.  But each time, there is a pause.  A pause to think.  It is this silence that I think about - even more than the No that they respond with.  Could there be a sliver of doubt?  How would it be possible for me to go on? 

A friend of mine called to share with me how wonderful she thought my story was, how strong she thought I was to be sharing it with the public.  I had updated her with this latest news, and all of the worried thoughts that trailed behind.  In the anxious tone I was conveying, she told me that she herself, and her children had a blood disease that had been passed down in her family.  It was something manageable and not life threatening, but both herself and her children had to be seen in the same type of setting as Toby's appointment was scheduled.  During these visits, she found more strength in God - because as she saw it, she was surrounded by so many people much sicker than herself.  Instead of worrying, she was thankful.  Thankful to God for the people she had been surrounded with, and the enlightenment that she had so much good to focus on.  I find comfort in these words.  

I like to let Toby walk out of our appointments after we're seen. It validates that things are done. He puffs his chest up, and shuffles his tiny feet quickly and deliberately - all too happy to get the hell out of there.  As we passed the front desk, the clerk hangs over the top, and gushes over how cute he is.  She mentions what a good walker he is and asks how old he is.  

"He's almost two", I say
"Wow!  He's SO TINY!"

Yes, yes he is. 

Thank you for Listening, 
Lindsey