I wasn't sure how to begin this post. I am really not even sure I can put all of my thoughts into words to write this post. All I know I can say is that God is amazing and I'm thankful for His blessings.
"Everyone needs an Isaiah in their lives to experience God's greatness," that's what my mom keeps saying since a few days ago, before we received the bad news. It's true. While God can show us His greatness in all that brings happiness and joy, He also show us His greatness in what brings us pain.
Isaiah had another appointment yesterday with the AIR Clinic. Even though Isaiah's doctor had just returned from maternity leave, still glowing 3 months after the birth of her daughter, the appointment was . . . heavy is all I can think of to describe it. She handed us a copy of Isaiah's most recent labs and with tears in her eyes told us that his IgE (Immunoglobulin E, the antibodies your body produces in response to something it views as a threat to your body) has increased. Again. It had increased by over 500 "points" and is now nearing 3,000 - his allergies have actually gotten worse. While it may not sound all that bad, she also said that given his age and the history of his labs, medically speaking, Isaiah will never outgrow his allergies. What little hope we had been given from the doctors has been taken away. His eosinophils (another way to measure your body's response to an allergen) were not included in the RAST testing (the blood test for allergies) this time, so we do not know where they are at this point . . . that test will come soon, though.
She reminded us that Isaiah is on all the medications that he can possibly be on and that all we can do is increase the dosages. She also mentioned that with the insurance changes that have been occurring recently, many of Isaiah's meds may not be covered in the near future - we have already experienced some issues with this, but have found loopholes to keep things covered.
One med that has helped manage symptoms for Isaiah was Xyzal - it is only covered by one of our insurances . . . and it is only covered once a year. Isaiah needs to take it twice a day, every day.
There were no talks about removing meds, just increasing some here and there because of symptoms Isaiah is exhibiting (one of them being covered in an itchy rash, again - most likely eczema). Oh, yeah, then we also switched one of the topicals to try and control the rashes on his body . . . the one that we can use on his face still works (it's steroid-free, so it's safer to use on his face).
While I sort-of expected to hear that Isaiah's IgE levels had not decreased that much, I definitely was not expecting to hear that they had increased. Although, I had one of those eerie feelings in the pit of my stomach, I still hoped for a large decrease.
I could go on and on about the things my son will not experience in this life without God's healing, but I really don't even want to think about it. It does make me think about what all of us, not in Isaiah's shoes, take for granted (what I used to take for granted before Isaiah). I could easily list them; I won't lie, the thoughts have wandered through my mind. But I just can't go there - it hurts and it serves no purpose except to make that pain worse.
I am thankful that our hope doesn't exist in the doctors, their words, or knowledge, but in the hope we can only find in God. I am thankful for such an amazing little man who can still smile and isn't missing a thing in this life - bubble or no bubble. He is oblivious in many ways and, yet, seems to understand that he's different . . . he even prefers what makes him different. His rigidity for keeping things familiar is actually a blessing - he doesn't complain that he can't have that cake, cookie, puppy . . . by the way, he HATES dogs . . . well, pretty much any animal that moves and makes a noise. =0)
Through his joy in his everyday life, you can see God's hand on him. Whatever God decides to do with Isaiah - heal him here or in heaven - one thing is for sure: God is amazing. Through Isaiah, God has touched so many people with his smile, giggles, and interesting perspectives. His quick wit and his charm always bring a smile to my face, not to mention laughter. He has a way of saying things that can make a rough day seem brighter and loves to make you laugh - though, sometimes, it's quite by accident.
He makes me smile, brightens my day, reminds me to be thankful and mindful, makes me realize how grateful I should be, and encourages me to be brave . . . and trusting. Through all of Isaiah's trials, he remains the same child - bubbly and unaware that life can be different. Of course, he gets the grumpies . . . but his joyful times far outweigh those moments. Sleepy or no, Isaiah smiles . . . and has giggle fits. I forgot to mention that he is quite spontaneous and can be quite random.
As I was writing this, he came running into the room, stripped, then streaked with his giggly self . . . in front of the open-curtain windows while our next door neighbor stood outside. In his defense, Ye-Ye had just sprayed him with a hose and so he was wet. =0) Ehem. Yes, I did stop writing to clothe my child, and no, he is not generally the kind to de-clothe himself. =0)
No matter what may lie ahead for Isaiah and for us as a family, I have hope that God holds all the answers, cures, and treatments - He sees the "big picture" even if I can't. He knows the beginning, middle, and ending of our journey. He will carry us through all of this and provide what we need and I trust Him . . . even if the places He brings us through are uncomfortable and painful. I know that God is working in it all and He has a purpose - "in all things God works for the good of those who love Him, who have been called according to His purpose" (Romans 8:28) - and that He has a plan - "for I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future" (Jeremiah 29:11). There is a reason and a purpose, even though the journey may be painful, difficult, or frustrating - God never guaranteed us a painless and easy-peasy life here on earth, He guaranteed He wouldn't leave us alone in our pain.
There is a song that has been playing on the radio almost every time I get in the car. That song actually began to speak to me. I can't help but tear up when I hear it because sometimes God's answer to us is not a quick healing right in front of our eyes, but something that takes a little longer . . . or a lot longer . . . sometimes, it's something we don't even see. Just because things aren't quite what we want them to be when we want them to be doesn't mean that we're praying incorrectly or lacking in faith. It doesn't mean that we're doing something wrong. I can't begin to answer any questions as to why other than God is God and He knows the reason/reasons. He brings blessings to us even in our pain.
I'll just let the song speak for itself . . . in fact, it may even be playing while you're visiting my blog (it's a song called "Blessings" by Laura Story, in case you're wondering):
"What if your blessings come through raindrops,
what if Your healing comes through tears,
and what if a thousand sleepless nights are what it takes to know You're near?
What if my greatest disappointments
or the aching of this life
is the revealing of a greater thirst this world can't satisfy?
And what if trials of this life
are Your mercies in disguise."
Yes, I do believe and will say it with a smile on my face: everyone needs an Isaiah in their life to show you God's greatness. Who is your Isaiah?
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