Let me introduce myself. My name is Lisa. My husband is Jim and we have 3 precious boys, Dean, Henry and Alan, gifts from God. We’re in our thirties, we’ve been married 8 years and we’re currently living in the Dallas area. Why, with 3 sons, is Alan getting top billing in the title of this mommy blog? Quite simply, because Alan is changing my life in ways I never imagined. He has been the biggest surprise of my life.
He was born last October, at 36 weeks, via C-section. My belly had been measuring small since week 30 and once I finally had a sonogram at 36 weeks just to make sure everything was okay, I was ordered to see a specialist that same day because the baby was measuring only about 3 lbs when he should have been closer to 6. The specialist ordered me to go to the hospital immediately for a C-section because there were some questions about what he was seeing in his brain, but nothing conclusive. There were so many questions and possible diagnosis flying around, still nobody really knew what to expect.
I am generally an optimist and we were all so encouraged when he came out with a strong cry and a great Apgar score (tests reflexes and such). Of course, being 3 lbs and 5 oz and an IUGR (Intrauterine Growth Restriction) baby, he was whisked away to the NICU immediately, where he (and I, as much as I could) stayed for the next 3 weeks.
He was a fighter from the beginning, and strong. I always had this sense about Alan that there was a strong soul in that tiny body. He had really high bilirubin and that was concerning for quite some time, but he never had any real issues in the NICU other than that, and being small. And so, after some intense conversations with a few NICU doctors and nurses (some were more supportive than others), we finally got to take him home at 3 weeks old, weighing 3 lbs, 10 oz. It was insane. But it was better than having my heart in two places and constantly having to split my time between my tiny baby and my husband and two other little boys.
But I haven’t yet mentioned the day Jim and I went from being one kind of parents to another. I haven’t mentioned the day our hearts broke. Our hearts have been broken over Alan and are still in the process of mending. In this process I know our hearts are being made bigger, stronger and wiser. Alan has already been one of the biggest teachers of our lives and this will no doubt continue for many years.
On Thursday, October 26, while Alan was still in the NICU, our favorite NICU Doctor, a very matter-of-fact man with a soft spoken demeanor, called us after Alan’s MRI results came in. We were very interested to hear what that would show since another Doctor had informed us after a less comprehensive brain scan that Alan did not have a corpus callosum. She and others informed us that many people live normal lives without this particular part of the brain and only find out that they don’t have one by accident, say after a brain scan later in life. We were a bit shaken by this news, but again, optimistic because of all we were hearing.
Doctor Nystrom’s calming voice had a somber tone that I picked up on the second he began talking. He told me to sit. He asked if I wanted to come in and have this conversation in person. I said no.
“Please tell me. What is it?” “Schizencephaly.” “How do you spell that? What is that? What does that mean?” I heard all these words. “Bilateral, Open-Lip.” “The worst case scenario.” “Severe Cerebral Palsy and Mental Retardation are likely.” “He may never walk. He may never talk.” “Clefts in his brain. Big clefts. Basically holes.” I heard the words and they bounced around, knocking my old ideas about my life over, causing chaos inside my own brain. “He will need extensive therapies, specialists, doctors, teams. You will need support groups, resources.” All these things sounded so foreign, so big and with so many unknowns. How would this affect our families’ story? How would this affect Alan? What would his life be like?
Fast forward six months and here we are, about 20 Doctor appointments with about 10 different Doctors later. We’ve been walking sleep-deprived zombies about half of the time and we’ve gone through so many different phases of worrying and trying new techniques, tricks and medications to address a plethora of issues and to try to get our lives back to some kind of normal. But none of that tells you much about the person that my little boy is on the inside.
Alan James is not a diagnosis. Even though his diagnosis can be, he is not a problem to be overcome. He is a precious child of God and a gift to our lives. Yes, our lives are much more complicated now. Life after Alan has been intensely trying and my sanity has been stretched so much farther than ever before that some of the issues I thought were so difficult prior to this season look pretty laughable now. Still, I wouldn’t trade what we’ve been through or our precious Alan for anything. He is ours, and He was formed intentionally by God for purposes we do not yet fully understand.
God has shown up in such blatantly obvious ways through the past six months. He has brought people and resources into our life at just the right moment to strengthen and encourage us and to help our little guy get to the next level of development. I hope I can share some of those stories in the future. I’ve learned that God can use Doctors, family members, church family and even Craigslist to bring us His deliverance. More on that later.
As difficult and unusual as this all has been (Schizencephaly is a 1 in 100,000 diagnosis, and the severe form that Alan has is even more rare), I know that there are more severe stories out there. Stories of all kinds. I was raised in a loving, God-fearing, upper middle-class family in a country where being a Christian is the norm. This trial is probably good for me. Actually, I’m sure of it. And though I can’t fully understand what Alan’s experience of life is like, I know that God has a special place in his heart for those the world may look at as “lesser.” So forgive me if I ever seem to be complaining or whining. I’ll try not to. I’m an open-book type of person, so I’m going to tell it like it is, for better or worse. But I don’t want to get bogged down looking at things too much through the lens of this world and miss the beautiful story God is writing behind the scenes.
I know that God uses hard stuff for good purposes much more frequently than He uses “nice” stuff. I also know that I can be kind of a wimp at times emotionally. I’ve always been a bit moody and vulnerable to downer emotions. (I am a musician, after all.) This experience has been changing me, re-shaping me. It has been breaking me and I know the re-building will come in time. This season of life has been a fire, burning off impurities and false dreams of an easy life.
My prayer is that our family will come out of this refining season looking more like our Savior, Jesus Christ, who suffered for us, and who walks through every fire with us. Praise God for working on us in such strange ways, even when we’re kicking and screaming our way through it! He is a Good Father and He disciplines us for our good.
Thanks for reading and I hope what I write here can be an encouragement and a help in some way. That’s why I wanted to start this blog. I’m tired of keeping my journaling all to myself. I think it’s time to go public with all these inner monologues. My time is more limited than ever, so if I’m going to be introspective, I might as well be extroverting simultaneously. Seems more useful, more productive.
I also hope this can be a two-way street. Please comment, email or facebook message me or tell me where I can read your blog if you have one, friend. I want to know as well as be known. I need others speaking into my life and I need to know the trials others are going through so I don’t get too caught up in feeling like I’m the only one struggling.
Please struggle along with me, friend.
Alan's Mom 