As I write this, my daughter is nine weeks old. Like any other baby her age, she knows her mama, hates to have on a poopy diaper, and loves toys with lights and music. And she’s super cute. With huge, pinchable cheeks.
She is also not supposed to be alive.
My daughter Lael has a very rare genetic disorder called Thanatophoric Dysplasia; it is a severe skeletal disorder that causes extreme dwarfism. It causes the arms and legs to be very short and the rib cage does not grow to a normal size so the lungs do not fully develop in the womb, making sufficient breathing almost impossible, even with help. Almost all babies who have this genetic mutation are either stillborn or die soon after birth. At 19 weeks pregnant, I discovered that one of my unborn twins was destined to die.
Despite the statistical overview provided by the National Institute of Health regarding the survival rate, our doctors told us that the condition was “100% lethal,” and that my baby, guaranteed, would not be born alive. The maternal fetal specialists were so sure of this, it was even suggested that I consider aborting her, despite my daughter being a twin. Her brother has always been healthy and normal; so, since they were in separate sacks, modern medicine would have allowed me to end her life without disrupting his. That’s pretty deep.
I said no.
Besides the fact that it makes no sense to proactively kill someone who will perish from natural causes in a matter of time anyway, I knew that I had to give my daughter a fighting chance. Why should I give up just because someone else thinks I’m going to lose? I had to give the God I say I serve a chance to work. I’m an ordained minister for goodness’ sake.
Abortion was not the answer.
And so began the emotional roller coaster, the test of faith. Mind you, my faith was not that God would automatically give me what I wanted, but that my family would be equipped for the journey, come what may. My faith said that we could agree with whatever God said. Sometimes children die. Sometimes you don’t get what you want.
Deep down inside, I knew that she would be born alive. I was kind of afraid to believe it sometimes, especially when the doomsday doctors kept beating me over the head with the prognosis, acting as angels of mercy sent to protect me from false hopes. In spite of them, however, I knew. But then there was the part of me that questioned whether or not I really wanted her to live.
She had such a potentially bleak future; would her demise be God’s mercy? If she survived, would I really be willing and able to deal with all that would be required of me for her sake? Would she? Would we be able to handle all of the pressure? The sacrifice? The responsibility? The horrified stares of strangers in public? The judgment?
I wasn’t always sure I could stomach that. Maybe the blessing would be for her innocent soul to simply go back to God before the troubles and cares of this life could corrupt her. Maybe God would let us all off the hook.
But that’s not how great men and women are made.
Then there were all of the people praying for her. Family, friends, Facebook—there was prayer going up around the country for little Lael. Thankfully, God granted our petition, and against all odds, my daughter was born alive and breathing on her own.
My little princess had done the impossible.
Nine weeks and two surgeries later, my baby girl is still here. Every day Lael is alive is a blessing and a learning experience. Skeletal dysplasia experts have a little more data to help someone else now. Many of the naysaying doctors are now rooting for her. The Neonatal Intensive Care Unit is brighter because of her presence; the nurses all love her and want her to make it. Her incredible smile, chubby cheeks, and will to live have won her many friends at the Helen DeVos Children’s Hospital. She constantly inspires hope in a place that too often knows the pain of death.
But she is helping people outside the hospital walls, too—especially me.
Lael has known only struggle since the day she was born. Every breath she has taken without the help of a machine has been a struggle, yet she continues to try. Spending most of her time alone in a hospital bed, not knowing what the future will bring, she still smiles. Discerning that she has a family who can only visit for short periods of time, without a home to go to like the rest of the world, she makes the most of the time she has with her loved ones, not focusing on the pain of separation but the joy of togetherness. Even when she is under heavy sedation, when she recognizes my voice she struggles to move and open her eyes, to acknowledge and enjoy my presence. I wait patiently to enjoy hers. She doesn't judge me for giving her brothers and sisters and our household more time than I give her every day. Her love is unconditional.
My daughter doesn't focus on her discomfort; the nurses say she deals with it, learning to adjust, no matter how many tubes go in and out of her body, no matter what new machine she must be attached to in order to live. All of the babies there eventually do. Without the comforts of hopes, pleasures, or entertainment, they play the hand they are dealt in life without raising Cain. Lael cries sometimes, tired of the struggle, but she doesn't give up. She just recently had some difficulties because she was actually fighting too hard; Lael was struggling to breathe on her own against the ventilator and compromised oxygen intake as a result. While hooked up to a machine that reminds me of C-3PO from Star Wars, she has enough fight in her to keep going, even when giving up a little bit is necessary for her well-being. Many adults with everything on the line who have no hope but to fight faint for fear. Knowing nothing else, she fights for her life with every breath.
And here you were complaining that you couldn't get the iPhone 6 when you wanted.
Rising to the occasion of being Lael’s mother has changed me completely. I can’t imagine my life without her now, even though a large part of it is going back and forth to the hospital. I work hard to keep a smile on my face for her. I take each breath I breathe seriously, no longer for granted. When things get hard and I think to complain, images of my daughter drown out the very notion. My entire outlook on life has improved, and I was already a pretty happy Pentecostal Christian before. I mean, I was happier than most. But insecurities ate away at me just like they do everyone else.
No more.
Life is too short, God is too real, and I am too much of a miracle myself to let it go to waste. Lael is certainly not letting her miracle go to waste. Her story inspires people around the country to fight against all odds, with a grateful heart just for the chance to fight. Although the word thanatophoric literally means “death bearer,” she has ushered life into her atmosphere every second of her life. My daughter has ministered more from her hospital bed than I ever have from a pulpit.
My special needs baby is my hero…and if you need one right now, she can be yours, too.
FIGHT.
- Ivo Jackson
UPDATE
10/20/15
Baby Lael continued to progress, grow, and inspire in the NICU. She was able to join her parents and four siblings, including her twin brother, at home in February 2015. Sadly, just two months later, Lael was called to be an angel in heaven. We speak her name and remember her always. ~ Jada Wright Nichols
October is dedicated to remembering our babies through Pregnancy and Infant Loss Month and activities.
