I will fight

I will fight for you

I always do until my heart

Is black and blue. 

One year ago today, the words "I will fight for you" meant something completely different than they do now. Last night, as I was rocking my sick little boy, who has come down with your everyday common cold, I was thinking about how this is so hard. Hard because I am tired. Hard because I have things

I need to get done. Hard because I know as soon as I put him down, he is going to wake up and start crying because he all he wants to do is be held. Hard because I know Henry is likely the only person that is going to get any sleep in this house tonight. However, these brief moments with him are so bittersweet because even though this is the hardest thing happening in life right now, it is absolutely nowhere near what life was like 12 months ago, 9 months ago or even 6 months ago. As I rocked Hunter, I was reflecting on life one

year ago today and how my world was flipped upside down and I had absolutely no idea how many times I would encounter the hardest moment of my life.

A little while back, someone said that Hunter’s 1st birthday would be really hard and emotional but that is nothing compared to how I am feeling today. I have shed tears today and I am not even sure why. Maybe its tears of happiness

because of the mountains this little boy has already moved or maybe its tears of loss because of all the moments I missed out on in his early months.  Maybe its tears because of all the things I went through that no mom should ever have to or tears because I am so proud of the little boy he is becoming.  All I know is that this last year has been a rollercoaster, but we are in one of the best places ever. When people ask me how Hunter is doing, I no longer have to internally cringe because I either don’t want to sound pessimistic or I just really don’t have the right adjective to describe how he is doing. Instead, I can happily say he is doing SO GOOD! 

Since being discharged from the hospital back at the end of December, we continued to struggle with Hunter’s GI issues and we felt we would never make progress.  In April, Hunter had his open-heart surgery and it went better than expected.  After his recovery time of about 8 weeks, he was back to what was his normal self at that time.  At that point, I was very frustrated with the lack of GI support we were getting and the progress we were making on even figuring out what was going on with his stomach, that I aggressively approached the idea of getting him into the Aerodigestive Program at Mayo.  It took us a couple of months to

get an appointment, but in early July, Hunter and I ventured down to Rochester for what would be a very long 4 days of appointments, tests, and procedures.  Once home, it took a couple of weeks to get anything back as far as a plan to move forward.  Let's just say, my mama bear side came out and several phone calls were made to try to get some answers.  We finally received the phone call that

changed everything.  His GI doctor at Mayo diagnosed him with a visceral hypersensitivity due to the J-tube use and

trauma to his upper intestines.  Prior to her calling to give me this information, I had done so much research on this

condition (all thanks to Hunter’s OT Nancy who first put the idea in my head) and I whole-heartedly knew this was what Hunter was experiencing so when I got the phone call to confirm it, I was shedding happy tears because FINALLY!  Finally, some answers, which finally meant some solutions.  However, before we could even start treatment for this condition, Hunter was admitted to Mayo for feeding intolerance.  We were able to see his GI doctor there and she changed up his formula, as well as, started him on a medication to help with some of the neurological and/or nerve issues associated with the visceral hypersensitivity. 

Her goal was to get him off J-tube feeds and on to G-tube feeds as soon as possible and she wanted us to trial and error as he tolerated being fed into his stomach.  I am happy to report that 4 days after he was discharged from Mayo, Hunter was 100% fed into his stomach.  This was HUGE and literally changed everything!! Since then, he has been hitting milestones like a champ.  He started rolling over, enjoying

tummy time, standing on his legs, sitting up unassisted, etc.  All things that never happened before, nor did we think would ever happen.  He has learned how to get around by rolling/scooting and is so close to crawling.  Every day is something new and I look forward to helping him reach every single milestone in his future.

Looking forward, I think I am going to have a really hard time reliving those days at Children's as they pop up on my memories on Facebook, etc.  It will be a daily reflection of where we were and how far we have come.  I just need to continuously remind myself that he is a completely different kid now and we had to go through all of that hardship to get where we are today.  God only gave us as much as we could handle and he knew we would persevere. 

With that being said, I can say that I honestly could not be more proud to be Hunter's mom.  He has taught me how to persevere, how to be strong,

how to be resilient, how to be patient, and how to love on a completely new level.  He has made me a better person. 

Yesterday, Hunter had his 1-year wellness check and his

pediatrician was so happy and impressed to see the progress he has made.  She also gave me one of the best

compliments.  She said, “I just want to commend you for being such a fierce advocate for Hunter.” I told her I will forever being a fierce advocate for Hunter.  He didn’t give up on me and I will never give up on him. EVER.

Cause I'm not givin' up

I'm not givin' up, givin' up

No, not yet

Even when I'm down to my last breath

Even when they say there's nothin' left

So don't give up on

I'm not givin' up

I'm not givin' up, givin' up

No, not me

Even when nobody else believes

I'm not goin' down that easily

So don't give up on me

-    S•Song lyrics from “Don’t give up on me” by Andy

Grammer