There is a book that someone bought Stella when she was an infant, it’s called “Ruby in Her Own Time” and it is one of my favorites. It’s about a little duck family who has 4 healthy ducklings and then Ruby, a little duck that is born later and is smaller than her siblings. Throughout the book Ruby’s siblings learn to eat, swim and fly before she does, and the Father duck keeps asking if she will ever catch up, to which the wise Mother duck always replies, “She will, in her own time”. I originally loved this story because it reminded me of Stella.
Stella didn’t breath, eat, come home or do anything developmentally like the other kids her age. She was always doing everything in her own time. Every time I tried to rush her along, our favorite nurse would say, “She’ll do it when she is ready,” we used to call it “Stella Timing”.
I remember when she was finally extubated from her breathing tube and we could finally work on oral feedings, it was one of the final achievements we needed to make before taking her home. I thought, “This will be a breeze, we will be out of here in no time.” WRONG! We learned quickly that our daughter had a stubborn streak. Now to be fair, she had a breathing tube down her throat from the moment she was born until she was 6 weeks old. We were told that she missed her window to practice her “suck-swallow-breathe” instinct that most full-term babies are born with. You would literally put the bottle in her mouth and she would look at you like, “What do you want me to do with this?” Also, because her insides were all switched around (her stomach was in her chest when she was born) her esophagus was twisted and stretched giving her an impressive gag reflex (which she still has).
Every day we would go to the hospital excited to work on feeding and every night we would leave exhausted, frustrated and sometimes covered in puke. During this season, Stella taught us patience. Even though she never did learned to eat orally while we were in the hospital, the time we spent working on it gave Mike and I a degree in how to set-up and work a feeding pump so that when we went home we were already familiar with bolus feeds, feeding pumps and lots of tubes! It also allowed us to wean Stella off pain medication and her need for oxygen support. This allowed us to go home with just a feeding tube – so in the end, her timing was perfect and better for all of us.
This is exactly how God works too. Early in my pregnancy we prayed for a miracle. I had it all worked out in my mind and knew exactly how it should go. We would go in for one of our ultrasounds, the technician would look at Stella and suddenly she would stop and say, “Wow! She’s healed! Where’d the hernia go?! It’s a miracle!” The doctor would rush in to double check and would say in shock, “In all my years as a doctor I have never seen this happen before.” Great daydream right? 🙂
Instead God took his sweet time. He made us wait through the last 4 months of my pregnancy and a long 87 days afterward to heal our daughter. However when I look back now, I can see the numerous miracles that he provided us during that time. Some were big and others were small, but the thing I am most astounded by is how he used our story to tell his story. I realized later that if he would have granted me my wish and healed Stella in my womb, no one besides a few close friends, family and the doctors would know. It would be amazing for sure, but maybe the doctors would have explained it away and our life would continue as it did before. By waiting the way he did, he allowed hundreds of people to join in on our story through our CaringBridge website, and he also gave us time to grow into the parents he created us to be. We went into our 20 week ultrasound a little bit selfish and very naïve young adults. We left the NICU humble, grateful and compassionate parents to a beautiful little girl that changed not only our world, but also everyone else that met or read about her.
At the end of the Ruby book, Ruby grows up to be bigger and stronger than her siblings, flying farther and wider than them too. She flies off into the sunset only to return home later with a family of her own.
Our health affected kiddos are so amazing, aren’t they? They are resilient. They learn from the beginning to fight hard for what they want. Today Stella is a really smart little girl that has lots of pre-school friends and a great, big heart. Most people who meet her now have no idea that she ever had anything wrong. I am so proud of my little girl and I look forward to watching her grow up into the woman that God created her to be.
But as parents, it can be really hard to accept that things are not in our control, especially when it comes to our kids. It takes a little extra faith and a lot of endurance to get through these hard times.
For those of you still in the NICU – I get it, there is nothing simple about NICU life. The constant alarms. The strangers touching, holding and caring for your baby. The horrible feeling every night when it is time to go home and once again leave your baby behind. The never ending pumping and freezers full of breast milk. The awkward phone calls to the NICU nurse late at night when you’re awake pumping (again) to see how your baby did with her last feeding or if she is sleeping okay. The empty room in your house where your baby should be but isn’t. It is a horrible experience to go through. I get it. And so does God.
“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 hope and a future.” – Jeremiah 29:11
You are not alone and I can promise it does come to an end. And someday you will look back and celebrate all of God’s fingerprint on your life and the life of your little one. You just have to trust that God will provide in his own time.
To Listen to My Story by Big Daddy Weave click here.