The Journey begins! Miracle Mila Marie

Since the moment she was born Mila was special!  Not the special that all parents feel nor the special you say when you do not know what else to use to describe someone but special because she just felt that way.  Out of the hospital she was sleeping through the night.  Looking back at my journals I often had commented on how content she seemed.  She had a sparkle in her eye that always seemed peacefully sincere for an infant.  This was our little "Mila Girl" for the first four months and then... that same look, that same temperament became the cause for concern.  She stopped sleeping through the night and her look of content became a "far off" look of inattention.  What we labeled cute was now concerning as we noticed our little baby girl show signs of serious delay.  At first you heard family make small comments of "I wonder if something is wrong."  You shrug it off because, well, why would there be...  As more comments are made and opinions formed, you begin to see what may be more than just cuteness.  Thankfully Michelle is a pediatric OT so whatever she said I believed.  She was concerned, so I grew to be.

After a trip home to Kentucky we proactively started scheduling tests.  We first went to Michelle's old work, Integrated Pediatric Therapy.  Her boss, whom we trust wholeheartedly, shared her concern and for the first time we heard "Severe delay."  This is easy.  We can handle this.  You have discussions of increased PT and intentionality.  You start to plan.  Still, we were not at ease.  We later hear, neurological issue and then I start to feel that this is getting serious.  Prayers of "God help us" become more acute and targeted cries to the Lord for protection.  After Neurological we hear it could be Chromosomal! That is a new one!

In the course of 3 weeks, we visit an ENT, a new pediatrician, a pediatric Ophthalmologist, perform an EEG to rule out seizures and schedule a MRI and visit to a geneticist.   The MRI, to us, was risky.  Our Mila Girl is 7 months, barley weighing in at 12 pounds.  Even our friends who are physicians, while confident, stressed the seriousness of the MRI.  That leaves the genetic test.  We were originally referred to Children's Hospital who is known for this but were also directed to a Lab test involving a cotton swab.  Sold!  During this time our Mila is showing signs of improvement with her movement.  Things like sitting up and rolling become huge milestones (She is 7-8 months so a few months behind the norm, which who set those norms anyway).  She is starting to eat canned baby food and the traditional non breast milk meals.  The genetics lab loose the original draw (another story) so we perform another test and send it off, now 6 weeks into our wait we begin to live as usual and the "prognosis" is something we know will come but it seems less urgent.  What is scary one day may be ordinary the next.

God is good.  Especially when he is preparing your heart for trial.  Michelle and the kids spend a few weeks each summer in Florida.  It just so happened that the Genetic test results came in the day I get their to spend the weekend and fly them home.  This day we will remember forever.  Our sweet new Pediatrician called us to tell us that Mila has something called 8p23 Chromosome duplication syndrome.  Specifics to follow but lets start with a feeling... Shock!  Our little girl has a genetic defect.  Am I even supposed to say defect?  What does this mean for her today, tomorrow, 20 years from now?  Is her condition treatable? What does this mean for her health?  Does this effect our other kids?  Will this affect Mila's kids, will she even be able to live a normal life?  A million thoughts enter our minds.  In these types of moments you search for answers.  One problem about this rare form of duplication, yes I said rare, is that, it is rare!  1 in 65,000 rare.  Only 16 cases rare.  With it being that rare, the others effected have a large range of delays.  These range from a few months in speech and motor delays to not walking until they were 9 years old.  We search for a silver lining, but there is little to learn.    We quickly understand the basics but not much more.  When you can't find answers you search for understanding that comes to our faith...

We love Jesus.  We trust in God's Sovereign control of our loves.  We believe that all is for His Glory.  We believe that all things good and perfect are from above and in this situation we know that Mila is a gift from above, good and perfect!  I sometimes fear being a Christian because I understand the responsibility this requires.  To walk faithfully even in trial.  This is going to be a trial, our cross to bear.  If you are around church you often hear that these momentary trials can be such sources of blessing.  It seems a little farsighted but hopeful!  In the onset of this news it is very hard to look past today to understand what greater purpose is at play.  Given we trust in the Sovereignty of our Lord, we may not know the purpose but can trust it is for our good and His Glory... Right?  Cerebrally that makes since but in the midst the darkness seems to be overshadowing.

The news is 10 days old and I will tell you that there is hope.  At first the words to pray were hard to find, but today what felt deep in my soul seems to be screaming in my Spirit.  Our 3 other kids love and protect Mila as if they innately understand she is fragile.  Which is funny because they easily resort to hurting each other.  Michelle and I long for each other because we feel this tough road ahead will grow us together.  For Mila, I love more each moment.  Yes you can say this about all your children, if you are fortunate enough to have some.  I cry with joy when I think about her and even the thought of this journey excites me because I get to be with her, intentionally.  I will conclude with my original statement... She is special!

As Michelle and I talk about how we can utilize our talents in humble submission to the Lord, I feel called to write my thoughts for a few reasons.  One, this is rare, and others may need to learn from someone walking through this because our resources seem bleak.  Second, I am an emotional person and writing helps.  The devil has seemed to attack me when I do not have multiple outlets and writing my feelings help.  Third, I want Mila to one day read this and see how much joy she brings, even from the beginning.  Lastly, I want to honor God!  Not for me but maybe for Mila.  This can be her voice until she is able to tell it herself.

Michelle and I love the Lord and we love our Children.  We believe they are an incredible gift from God and we feel humbled that he choose us to be the proud parents of our special kid.  Like I mentioned to Michelle this week, we have always thought of adopting a special needs kid and if we would have been given an option to pick any child on the face of the earth, not knowing Mila, we would have reached out our hands, picked her up and held her as tightly and genuinely as we do every time we hold her now.  This journey to come, this special child, will be our greatest joy, besides the faith we have in Jesus Christ.

To my other three kids; Sofia, Luca, and Roman, we love you all the same yet differently.  When people with one child asks, "How can you love another child like your first?" The answer is simple, God just makes it happen.  With that said we love you with all our hearts and I hope you believe us because we tell you constantly and with sincerity.  This road we have to walk down with Mila may be hard and please know that my prayer is you gain just as much or more from this than your mom and I do.  Just know that this Blog is for Mila, for others with this syndrome and for the Glory of God alone.  You kids, tell your story, give Glory to God and be glad you can because that is the purpose of life.

With Love, Justin