A year ago, I could not fathom how we were going to get through 2017. We were just about to leave the NICU after 9 weeks, knowing that we would make the hospital our second home with the multiple surgeries and follow up appointments Josiah would need.
Yet, here we are a year later, three surgeries down and only one more to go.
It was only possible by the grace of God and by your prayers. Truly.
And as we head into this last surgery, we are anchoring our souls on that truth once more. That His grace is truly sufficient enough for us and the prayers of a righteous person are powerful and effective.
So, what does this last surgery look like and what does it mean for Josiah?
Well, to put it simply, it’s the end but it’s also the beginning.
Yes, it’s his final surgery. Due to his imperforate anus at birth (non-related to his prematurity), Josiah has been passing stool out of a colostomy on his side and into an ostomy bag for the last almost 14 months (that was his first surgery the day after he was born – to create that colostomy).
Josiah then had two more surgeries to ultimately create a new anus. Now, his surgery team will take down the colostomy and reconnect everything so that he will be pooping out of his bum – YAY! I’m not sure if I will laugh or cry at seeing his first poopy diaper…
So, in many ways, this last surgery will be an end for us. The end of the colostomy, ostomy bags, surgeries, etc.
But what people often don’t realize (and we didn’t either until recently), is that just because the surgeries are done does not mean that this journey is over for Josiah.
In fact, it’s really just the beginning.
Our surgery team gently but firmly warned us from the start that 85% of kids with imperforate anus face constipation or incontinence post-surgery…for life. Many of them need to take medication to regulate their stool output…for life. Although they go on to lead normal lives from a social and behavioral standpoint, medically, they will always need monitoring.
In Josiah’s case, our surgeon has said that more likely than not, he will face constipation. This can range from mild to severe on a regular basis. We will not be able to regulate his pooping just by seeing how many times he has a dirty diaper (like most kids and parents do) because a dirty diaper will not indicate whether or not he has passed all of his stool. Thus, we will need to go in for regular x-rays to make sure there are no stool blockages in his system.
And there is no way to really predict how Josiah will do with all of this until a few months post-surgery. Things can start off well, but then change due to so many factors.
Of course, our surgeon did also say that some kids do totally fine and don’t need much monitoring or medication. But they are the exception, not the norm.
Throughout this last year of watching our little miracle boy defy the medical odds over and over again, I have learned one thing. Yes, it’s important to listen to your child’s medical team. They’re specialists and they are trained to help in the best way they can.
But they do not have the final word.
The Almighty Creator, the Great Physician, the Good Father…He has the final word.
Trust me when I say this is easier said than done. Some days, I believe this so wholeheartedly, nothing can take me down. Some days, I am lost in a sea of unbelief, despair, and fear.
But knowing the facts, we walk into this last surgery believing and trusting that so far, our son has been the medical exception in numerous ways. We believe and press in for him to again be the exception post-surgery and for life.
But we also declare that no matter what happens and no matter what we may face in the future, he is and forever will be our miracle boy. And God’s promises over him are bound up in his namesake – “Jehovah has healed.”
So in the tension of what is and what truly is, we humbly ask for you to partner with us in prayer. We can’t do this alone.
- Surgery is scheduled for Wednesday, January 17th (most likely sometime in the morning). We will be admitted on Tuesday, the 16th, for Josiah to receive treatment that will clean out his system (no stool can be present when they are bringing down his colostomy during surgery). Please pray that we will all stay healthy (illness will delay surgery), that the treatment and fasting Josiah will need to do will go well and as pleasantly as possible, and that the final surgery itself will happen better than planned/expected. We’re still contending for miracles.
- We will remain in the hospital for several days post-surgery. We can only be discharged after Josiah passes his first stool through his new anus without any complications (the doctors say this could take anywhere from 2-7 days on average). Please pray that Josiah will poop well and quickly and that he will heal amazingly well and beyond all of our expectations.
- Then begins the recovery and follow-up process. We are contending for Josiah to poop so well that he will not need any medication. That will literally be a miracle. We are also praying for no complications post-surgery and that the healing process will proceed without any hiccups along the way (also praying that none of us get sick as that can impede healing).
- We will need grace to walk this road. Please pray for my husband and I as we support Josiah and one another through this process. Honestly, the kiddo has handled it better than we have at times. Please pray that we will believe in the impossible. That we will pray and worship and exercise our faith. That we will have patience and kindness for one another in the midst of tiredness and stress. That joy and gratitude will overflow in our household as we witness the glory of God in our lives.
I suppose one thing I have learned from all of this is that our journey of faith – of believing in the all-possible God to do the impossible – is never over. Every day is an opportunity for us to exercise our faith, to partner with God in fulfilling His will and plan in our world. There is no greater honor than to walk with Him and lean on Him in this life. We may not always do it well, but we press in to keep running this race.
No matter what comes our way, we know this to be true…this may be our cross to carry in this season, but there is priceless glory at the other end of it.
Thank you for praying with and for our famiLee. You are a part of this miracle story.