The past few months have been difficult to navigate. No doubt about it. From discovering that Hasya’s spine had curved to the point where her internal organs were being compromised…
…to learning that there was no way to stop it from curving farther and that gravity would continue to pull her spine causing the curve to become worse and worse—ultimately causing devastating harm.
To being told that it was a now or never surgery.
To weighing up the risks both ways.
To wrestling with the consequences—whether we said yes or no.
To hearing many, many opinions and thoughts from medical people.
It’s hard making tough medical decisions. And for us, this was the hardest one we have made so far on our journey of raising these treasures that the Lord has blessed us with. Sure, we navigate medical things all the time. That’s part of saying yes to children who have special needs. For us, it’s just life as we know it, and we are so thankful that God chose us—even in the hard times. But making the decision to do a full spine fusion on our daughter who is nearly 19, weighs just 45 pounds, has plateaued in her growth and will more than likely stay this size for the rest of her life (due to 15 years of horrendous neglect and abuse), and has many other special needs on top of severe scoliosis has been a different kind of hard.
As does every parent in our situation, we entered into this journey with open hearts and with a desire to go to the ends of the earth to discover what was best for our daughter, no matter how things would unfold.
Six months of every medical procedure under the sun to determine her eligibility for such a big procedure stretched me emotionally. There is nothing in the world that we would not do to give our Hasya the best quality of life that we could. But we needed to know for sure that it was right for her before we took one step forward. After suffering at the hands of people for 15 years, being starved to the point of near death, and experiencing more pain and neglect than my human heart could ever imagine, I truly ached at the thought of putting her through even one more thing that would cause her pain. The mere thought of Hasya suffering anymore turned me into a weepy mess.
As we inched forward and got a second and third opinion and ultimately ended up switching to a different surgeon, we were met with so many opinions from people.
“Why do it when she is so very disabled already?”
“Why do you want to try and extend her life when God has numbered her days?”
“Why do this when she doesn’t understand what’s going on?”
“She’s going to be in a wheelchair for the rest of her life. Why straighten her spine?”
On and on.
I have thought about the things that people have expressed so much over the past three weeks. I understand where they come from and why they shared. I really do. Deciding to do a big surgical procedure on a child who is disabled is honestly one of the hardest decisions.
For months we grappled with so many questions.
Over and over again.
But eventually–after so much prayer, hearing the risks both ways, and waiting for peace in knowing which way to move forward—it came down to just one thing.
Because her very life—her life just the way she is—is valuable and worth fighting for.
When everything was said and opinions were shared, we knew that there was NOTHING that we would not do to make Hasya’s life more comfortable. We knew that we would do whatever medically possible to have her with us for as long as the Lord allows on earth.
Because that’s what we would do for every single one of our other children. And Hasya is no different.
She is precious.
Valuable.
Treasured.
Priceless.
A gift from heaven.
A blessing worth fighting for.
Even when her life looks different to our other children.
Even when we don’t know what the future holds for her.
Even when to some it makes no sense.
HER LIFE HAS IMMEASURABLE VALUE.
As my beautiful daughter lies in her bed–her tiny body fighting extra hard to heal—my heart is filled with so much gratitude. We truly do have so much to be thankful for.
Hasya came through the surgery so much better than we (and every medical person who has been a part of her journey) ever anticipated.
Her spine is straighter than they ever dreamed possible.
She is breathing perfectly. Her lungs are functioning better than ever before.
For the first time since coming home, she is warm. Like, really warm! Her circulation is finally working as it should and her limbs are no longer ice cold.
Every internal organ is functioning as it should.
We have her pain well managed.
Her crazy long wound looks amazing. No signs of any infection which was a huge concern.
Her sweet smile is slowly returning as she’s getting a little stronger every day.
The road is definitely not easy, and Hasya has a long way to go in her recovery. Our days are full as we care for our daughter. We’ve had to make some sacrifices, say no to things that we would’ve said yes to, become more housebound and made some changes to accommodate this temporary new normal. But what an honor it is to be the ones whom God has called to pour out our lives for the sake of this child. He never promised us easy and neither do we ask for that in our lives. Only that He would be with us in every decision, in every victory and in every valley that we navigate on behalf of every child that He has blessed us with.
His presence is enough for us.
My heart is overwhelmed with gratitude for the love that has been shown to us, the meals we have been given, and the support from friends and family. Thank you for your prayers. Thank you for your love for our Hasya. No words can ever express how thankful we are.
We’ll continue to take one day a time knowing with steadfast assurance that His grace is sufficient. That His strength is made perfect in our weakness. And that He who holds the universe in the palm of His hand will assuredly continue to hold our Hasya too.
And if we must do it all over again…
We would.
Because she is so absolutely worth it all.
To every parent walking the difficult road of medical decisions for their child, my heart and my prayers are with you. It’s not easy. Praying that God will lead and guide you in what is best for your child. May you know His peace that passes all understanding as you wait for answers from heaven. He will be faithful to you!
