Without spending this whole blog writing about this angel child (which I could), I want to take a brief moment to share any enlightenment I have gathered from witnessing this experience. My best friend for over 12 years lost her 2 year old niece to a battle with multiple medical conditions. I was able to follow her story, along with thousands of others all over the world, through her mothers words via a blog. While her short life was filled with complications and struggle, documented each step of the way in permanent letters on my screen, each post I read translated into that of an angel - guided by other angels on her journey and path in this realm. She had a way of touching everyone's heart, presented to the world in a bubble of hope and goodwill, and optimism. We were able to watch her grow and thrive when the odds were against her. Her life, while momentary, condensed the love and faith and worship a healthy person could not achieve in their long lifetime. I am grateful for knowing this family and seeing their faith swell. I am sad for their loss, and the tears that they cry, but I am so happy that this dear child is in the arms of her FATHER.
You have seen me ask the question before - When is it OK to worry when so much worse is going on around you? And this is the reason. As a parent you can't help worry, its human nature to protect our young. But watching this experience has softened me. It has allowed me to let go, just a bit, of the jaw clenching fear for my son. God has a will and a way. Beauty can be found in tragedy, if only for a moment, then shadowed again by the longing to go back to the way it was. The selfless devotion this family has for their faith and love of one another is inspiring. And as such, has helped so many individuals soften themselves too. It has helped us realize we need to squeeze our children a little tighter, a little more often. Such a huge accomplishment for such a tiny angel. Rest in peace.
Dr. Harbison would like to speak to you.
Dr. Harbison is a pediatric endocrinologist who works in New York City. She is one of the leading doctors working with children with RSS. If you are part of the communities of children with endocrine disorders and growth problems, like we recently are, you know her name. You compare her relationship to the growth disorder world to a Michael Jordan of the Basketball world, a Michael Jackson of the Pop world, a Michael Buble' of the cougar crush world. Yeah, she's a big deal. So you can imagine my surprise when on a random weekday, a notification popped up in my facebook with a comment I had been tagged in. Posted to the board of "Life with an RSS/SGA child" by its moderator - "Lindsey Schultz Jones, Dr. Harbison would like to get a message to you. Please check your other folder." My fingers quickly moving my cursor and clicking in my messages tab, only to see a message posted with more details.
"Hi Lindsey, I feel slightly weird writing you this out-of-the-blue message, but there is another mom on our page who is super experienced with RSS and other stuff -- her 19 year old son was misdiagnosed with CAH when he was an infant and treated for it for a while, before they found Dr Harbison and the correct diagnosis was made. But as such, she is super familiar with pituitary and other hormone issues. She and her son are in New York today having an appointment with Dr Harbison, and she asked Dr H a question relating to your son. So then Dr H asked to see the photos of your son and other info so up comes Facebook.... Dr H has some questions and concerns that are probably already covered by your local doctor, but she wants to make sure. So she gave her the info and [she ]called me and asked me to message you and give you [her] cell phone number. It sounds really important so if you can call [her], she can relay Dr Harbison's info to you.'
I couldn't phone her fast enough. Thoughts racing in my mind. First, someone across the country read my blog. MY BLOG. Whoa. Second, she knows Toby! And she's trying to help him! What a precious gift God has given me! This woman travels to New York specifically for these appointments for her son. That's how good this doctor is. I quickly connected with her and she shared with me that she follows our story and could relate to us because of her journey with her son. Her son is now grown, so she has had many years more experience than I have. Toby stuck in her brain, I'm sure the same effect he has on most people who see his smiling face.
She shared with me clinical information Dr. H wanted me to be aware of. Different hormones we should be focusing on. Advice that I needed to bring to our personal endocrinologist. I am thankful and humbled a complete stranger, unprompted, spent even just a minute of her important appointment asking questions about my son. To protect him. God is good.
Terrible Twos
I can't tell if Toby is just in the terrible two phase or if his hormone therapy is making him bonkers - or both. While I'm so grateful this new medicine seems to be doing the trick - prompting 8 am pizza parties, clean plate clubs and creating a non stop cookie monster....
I'm getting a little frazzled by his tantrums. Ok. Alot Frazzled. Like I'd rather pluck each one of my hairs off of my head with a tweezers than be around my son when he's throwing a fit. Yes, I see an improvement. He is heavier - I actually have to work to lift him up. I haven't weighed him because our scale has a dead battery, but I can tell a huge difference so far. We've started documenting his height on his bedroom door. Over an inch taller since we started just a month ago. Things are good. Well, except for the demon that materializes when he accidentally breaks his cracker taking a bite. 10 minutes of crushing the pieces in the carpet - huge tears, red face, running into his room, slamming the door, SCREAMING, head banging on any surface it can find. Some times, I just have to bear hug him for 3 minutes straight to get him to calm down. And I can guarantee he doesn't remember why he's mad in the first place. He's fighting just to fight. I've read this is a side effect of the hormone therapy- and that it dissipates over time. Normally, I wouldn't wish time to go faster, butttttttttt - time needs to go faster. Or I'll be bald, alone in my bathroom with a tweezers in my hand.
It's been these past weeks that have had me come to the realization - God wants me to go on vacation. Yes, he intently and purposefully needs me to get away from my children for a few days. We have had our trip booked for months, long before Toby's issues got really bad. Parker and I thought undoubtedly we'd have to cancel when Toby got his NG placed. But as you all know, the plan worked in our favor and it was removed. Thank you God for a doctor that listens. Thank you God for giving us the strength and courage to stand up for ourselves. See, he really DOES want us to vacation?! I am worried about leaving, of course. But Toby is content for now. He's in a medication regime that seems to be working at regulating his systems the way they are intended to work. My 8 month old is, well, perfect.
Can we really get away for 5 nights, by ourselves, without children outside or inside my womb for the first time in the last 3 years? God says YES. For now. We need a break. We are exhausted and emotionally checked out from each other. This time spent away from our stresses can only be good for us - I say with a question mark as I'm biting off my last fingernail. We have 5 more days until we take off. Provided we have no more setbacks - our sitters are lined up and my emergency contact and medical information sheets are filled out. I'm sure I will be a nervous wreck, but I'm hopeful I'll get to the beach with a pina colada, sit in my beach chair with my toes in the sand, and thank GOD for his will and his power. For showing me just how important faith is. For allowing me to watch an angel born and placed in HIS arms within 2 short years. For prompting a stranger to advocate for my son. For encouraging me to continue writing and praying - because I'm just not certain the best has yet to come of this.
Thank you for listening,
Lindsey
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