I grew up thinking that most people had it all wrong about miracles. I would read inspirational quotes or hear things like, “Every sunrise is a miracle” and scoff. I’m not proud of that reaction, but it’s because I thought that by definition, miracles had to be extremely rare to count. These sayings did not fit in my cynical worldview that insisted people overstated everyday occurrences in order to feel better about themselves.
For most of my life, I had been one of those “glass half-empty” people, which is weird because I never wanted to be or thought that I was better off that way. In fact, I acknowledged readily how much better I thought it would be to have a more optimistic outlook, but I was just a realist who couldn’t ignore all the problems in the world. Eventually, I convinced myself that God must not concern Himself with the details of everyday life, but only intercede when He was really “needed”. (Apparently it is a common mistake for people to try to make God into what they think about the world, but of course I was blinded by the thought that I was actually right.)
I also grew up thinking I was pretty unlovable and would probably never get married for that reason (more on that in another blog post). To my surprise, God gave me a wife at 22, well before most of my friends and certainly before I had my life “figured out” enough to “settle down”. She was ready to start a family right away, and since I didn’t think God would care one way or another, I figured it was a good idea too.
Now, when you get married young, people can’t help but tell you to wait to have kids, in order to “enjoy your marriage” since you have plenty of time for that later, as if they have some crystal ball telling them that things will work out better for you if you take their advice. In our minds, we knew no one is ever really ready to have kids, but that we were as ready as we would ever be.
Then we got pregnant. Well, technically just Aileen did but I started eating for two as well, so I think that counts. Anyway, I was overjoyed, scared, excited, nervous, and a lot of other emotions they don’t have words for yet. It was amazing and I couldn’t wait to hear the heartbeat, find out the gender, hold him or her for the first time, and teach him how to throw a curveball. Actually, I was convinced it would be a girl, but she would still learn how to throw a curveball better than any other boy ever could.
It was like living in a fairy-tale for the first few months, planning out the future for this tiny person that we had made together. People throw parties for you and give you cool, miniature stuff, and you get to decorate a whole room with these adorable colors and patterns that are surely perfect for this person you have never even met. Eventually, you get to do an ultrasound, which is like meeting your baby for the first time. Even though you have heard the heartbeat a few times by now, and maybe even felt a kick or two, seeing is definitely believing.
Anyway, the second ultrasound is supposed to be this over-joyous occasion when you find out if you will be buying pink or blue onesies for the next few months. But ours was being stubborn and shy, until the end when we finally found out IT’S A GIRL!
Our celebration was cut short, however, when we found out they had seen something else – a slight distortion in the shape of our baby’s brain that meant she could have something like Spina bifida or Down’s Syndrome.
Shortly after, we were brought into a small, white room with a white table, white chairs, and a doctor wearing a white coat and a very serious look on his face. He would spend the next few minutes telling us what he saw, and more importantly, what he didn’t see. I honestly don’t remember a single word he spoke or even the sound of his voice over the pounding of my own heartbeat. All I remember is that I was sweating a lot and trying not to cry. Aileen told me afterwards that he was basically trying to convince us to, as he so delicately put it, “consider terminating the pregnancy.”
At the very least, he wanted us to have an amniocentesis done, which you are more than welcome to Google to find out more. Basically, it is a procedure to find out if there is a chromosomal abnormality for certain, for people who might want to know that information in helping make their decision about continuing the life of their unborn child. And, oh yeah, there is a slight but very real possibility that doing the procedure could make that decision for you (read between the lines).
We spent the next few months in countless appointments, wondering almost daily which doctor was right about their guess as to which genetic disorder Lydia would have and if they would decide that day to induce labor (much sooner than her May 15th due date). Yes, we had already named her at that point, because to us she was a real person.
In the process, we were given seemingly every possible diagnosis, from Down Syndrome (Trisomy 21), to Edwards Syndrome (Trisomy 18, where “the majority of fetuses with the syndrome die before birth”), to “she will probably be born with lots of problems that aren’t worth dealing with”. The best outcome that was predicted was not very hopeful, yet no physical evidence could be found along the spine. This meant that most likely, the opening was so small there was a chance that very little damage had been done. What we eventually found out was that it was so low and so small, it was easily repaired and was possible she would incur no long-term damage.
Lydia had something else the doctor’s couldn’t see or plan for: prayer. I believe it was the power of prayer from my family, friends, and church who God listened to and answered. And for the first time, I saw a miracle.
She was born with marks on her face and we were told she would need plastic surgery someday to help hide it, but that it would never go away. After a few weeks it had faded, and now it is almost completely gone.
She was also born with a cloudy cornea in her slightly smaller left eye and we were told she would probably need to have a corneal transplant sooner than later. We were also told she had no vision in that eye and that we should replace it with a prosthetic one. After about a month we were told the cloudiness improved to a point better than they would expect from surgery, and now she patches and wears glasses to improve her vision and keep both eyes safe.
Right after she was born, they thought she would not be able to poop! That is my favorite thing that she proved them wrong about almost immediately. I just wish I could have seen their faces when it happened.
And she was born with Spina bifida, which we were told would almost definitely lead to her needing a permanent shunt due to a likely case of hydrocephalus (fluid build-up in the brain). She has never needed a shunt and to her urologist’s disbelief, was able to empty her bladder the first time it was tested.
She learned to walk at 18 months, which we were told she would struggle to do. But if you know her, you can believe that she was a little too busy learning how to talk as soon as possible to find the motivation to get up and walk around any sooner than she wanted to.
Lydia Kathleen Allen was born at 12:27 AM on April 26th, 2006 and weighed 4lbs, 3 oz. Later that day, she had surgery to close the small hole in the lining of her spinal cord, near the bottom of her tailbone (and she has had no continued need to follow up with any doctor from birth for any reason other than for her glasses prescription). A few days after that she was diagnosed with M.I.D.A.S. Syndrome, a partial deletion on the 23rd chromosome. Go ahead and Google it, but at the time there were 2 websites that mentioned it anywhere…I think there are 3 or 4 now (in any case, it’s so rare, there have only been about 50 cases ever reported in medical history).
Since then we have watched her grow and continue to confound experts at CHOP and other world-renown specialists. She helps me see that every day is a gift and a chance to love her. She is exactly what I needed in order to see that God loved me the way I love her, unconditionally despite my imperfection.
She is my miracle.