To the New Mom of a Special Needs Baby

If you’ve suddenly found yourself facing a mountain of questions and anxieties you never thought you would face concerning your new baby, questions and issues that you’re not sure you’re equipped to deal with, this post is for you.  Finding out that Alan was going to “most likely have severe cerebral palsy and mental retardation” in the NICU was a devastating blow to my husband and I.

Despite the fact that both of us have had experience working with people with disabilities (Jim worked with people with disabilities in various capacities for about a year and I worked with people with special needs during and after my studies for my Masters in Music Therapy), finding out that we would be raising one of these wonderful souls in a challenged body ourselves was overwhelming.

I remember the initial numbness I felt, in complete shock, knowing that my life would now be drastically altered whether I liked it or not, and having no idea if that life was going to seem manageable or if every day from now on was going to be colored with a deep sadness over my precious boy.  I remember crying in the NICU while holding him all hooked up to wires and with this crazy, wire-filled cap on his head while undergoing a 24 hour EEG to make sure he wasn’t currently having seizures, since they are almost guaranteed with a Schizencephaly diagnosis.

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I remember crying multiple times alone in the NICU with Alan, just overcome by the heaviness of his diagnosis and my concern for him, and quite frankly, for myself and the rest of our family.  I remember looking at him and these questions popping into my head:

“How can I ever look at him from now on and not see him as broken?  Will I always feel this deep sadness about his condition every time I look at him?  Am I anywhere near capable of handling this?”

It was at that low moment that I believe God brought the story of Jesus healing a man born blind from birth in John chapter 9 into my head.  His disciples asked him, “Who sinned, this man, or his parents, that he was born blind?”  Jesus answered them, Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.”  Alan wasn’t born this way because God looked away for a second and things went wrong.  Alan isn’t an “oops.”  Alan was formed by God this way, for His own, mysterious purposes. 

And maybe I’m not capable of handling this on my own, but as the Apostle Paul writes in 2 Corinthians 12:9, My grace is sufficient for you, for My strength is made perfect in weakness.”  I have been learning the secret of giving my worries immediately up to God and then standing back, watching for what He will do to alter my attitude or my situation.  Yes, I can be very weak.  We all have moments of failure.  But God is calling us all to lay down our own attempts at strength and to incrementally learn to simply be available vessels for Him to work in and through.

Yes, this has been hard.  The first four months went like: treading water, starting to drown, someone reaches down and lifts us up, we get a few desperate gasps of air, then we start the cycle over again.  But now that Alan is seven months old I can honestly say we’ve turned a major corner, and things are survivable.  And beyond that… I can’t even begin to tell you how much I am connected to that little boy on a soul level.

If you are at the beginning of this journey, please hear me, YOUR CHILD IS AN ABSOLUTE TREASURE AND A GIFT FROM GOD!  This may not be clear to you in your desperate moments when you are just so worried and stressed out and sleep deprived.  It will most likely feel like more than you can bear and it will, if you will let it, most likely drive you to God in utter dependence like nothing else ever has.  But trust me, if you can patiently endure, keep begging God for mercy, and keep doing everything you can on behalf of your precious child, YOU WILL NOT REGRET IT and your life and your soul will be forever blessed by this experience.

This experience will deepen you, will stretch you, will bring new strength to your inner person in ways you cannot now imagine.  If you’re anything like me, there will be days it seems the opposite is true.  There will be days your behavior is closer to that of a raving lunatic than a nurturing mother.  If you’re blessed to have an amazing partner, there will be days your spouse will have to step in because you cannot function, hopefully just for a few hours at a time, or for a portion of or an entire night so you can actually get some sleep.  But if you can just keep pressing through the hard, hard stuff, giving your worries up to God on a daily, sometimes hourly basis, there will be so much joy waiting on the other side.

You see, that sweet, strong soul trapped in that body that doesn’t work quite the way most bodies work, is probably one of the most awesome people you will ever have the privilege of meeting.  If you do the work of investing, sacrificing, and pouring into that little life, you will get to see firsthand such a beautiful soul beginning to stare back at you, once he learns how to focus his eyes on you and realizes that there is a world going on around him that he can engage with in some way, and the beauty of that little soul will at times take your breath away.

These children can’t do what typical children do.  But that in no way makes their souls any less beautiful.  If anything, it makes them more beautiful.  These children have to learn early that life is hard.  But if they’re lucky enough to have parents who love them through the hard early days, they learn that they are intensely loved and they learn the comfort of that love in the midst of so much discomfort and challenge.  They don’t have the privilege of growing up feeling like they are the best and the brightest on the block.  They know they are dependent on others.  But if they can learn that they can depend on others to care for and to love them, their souls will shine with a beauty that is astounding, and it will be most beautiful to your eyes, knowing the soul that lives behind theirs and the hours of love invested into that soul that helped it to shine the way it does.

Every child’s story is different, so I can’t tell you how long it will take for you and your family to get through that really tough first season.  And it’s probably inevitable that there will be multiple seasons that feel really tough (though for our family, hopefully not as tough as the one where we hardly slept for four months).  But what I can tell you is that, from my experience, that initial shock and the really rough season where your family is adjusting to having a baby with special needs does pass and you will eventually find something that feels like normal.

And realizing that our family had finally found it’s new normal when Alan was about six months old was such a Hallelujah moment for me!  It was around this time that he started sleeping a good four hours in a row before needing a little rocking or repositioning and then would sleep another few hours before needing to be fed again.  It was actually survivable between the two of us!

If you are a more seasoned parent of a special needs child reading this, or anyone who has experience working with this population, I would love your comments and a few encouraging words for any new parent of a special needs child to read!

I’ll close out with a video of precious Alan, around the time he started cooing, about a week ago.  You will see in this video how hard he works just to get one little coo out, but oh, it is worth the wait!  He has been getting increasingly vocal lately, which has been extremely encouraging and smile-inducing for me.  I pray that this post has been an encouragement for all who know and love people with special needs!  God bless.

Alan Cooing

 

 

 

 

The Fire Season

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.

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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.