One day at a time...
It has been 10 days since we heard Mila has Myhre Syndrome. The initial news was devastating and since we have had a range of emotions from anger and confusion to sadness even joy. The joy part is hard to explain and I am not speaking on behalf of my Bride but I have had a moment or 2 of joy but it has only been in the presence of Mila because she is so full of life, and at the moment, healthy which can bring joy!
We still do not know a lot of what this syndrome means long term. We know that there will be complications. We know that Mila will look different both in her size and in her appearance. What we do not know is when, how or in what way all the complications you read about will manifest itself.
So let's start with the silver lining. The first is that we were about to have brain surgery to decompress the effects of the Chiari malformation. The Surgeon said that the genetic results would not change his recommendation to move forward. This is a blessing because we now know that the surgery could have created trauma to her little system and the underlying "Fibrosis" could have created scar tissue on her brain making for a severe situation and hard recovery.
The other sliver lining is the discovery of Michelle's BRCA 2 gene. If this is news to you I am sorry but as part of the lab testing, geneticist order tests of parents as a secondary finding for the child. What was found is that both Mila and mommy have BRCA 2 and those with it are more susceptible to cancer. This is scary. The silver lining is that now we know that we need to be on top of it, or be more proactive with removing the threat... In essence, Mila (Our Angel) could have saved Michelle from cancer or worse.
Genetic testing is intricate to say the least... It has been described to us as our body is like a library, our genes are books and the sequence is a sentence within the book. So when they do a full Exome sequence (which we did), you are looking for a misspelling in a sentence within a book. When a misspelling is found you cross reference the families genes to see where the misspelling came from. In this case Mila's syndrome it did not come from Michelle nor I and is thus called a De novo gene mutation. This is another silver lining... This was a God thing.
We believe that God is Sovereign over every situation. Over why we are in Texas, why I am lucky enough to be married to the greatest woman on earth, why Trump is president and even why Mila's life is in danger. We can't question God, we can only hope. I believe the range of emotions is part of the natural grieving process. The anger I felt toward God is common. The confusion we all feel are probably so we search for significance in this situation.... In the end we do not know the why but only the WHO. God is the who and although I struggle to write this, he Loves us, he wants this for His Glory in this World. That we can trust.
Michelle and I are outwardly Christian. We try to live our life in accordance with God's Will. We want to be the greatest parent's, friends, sons/daughters, siblings, etc. by way of Loving through our faith. If we say that Jesus is Lord we MUST believe that His Word is true. If everything the bible says is absolutely true than we must read things like:
Exodus 4:11 The Lord said to him, “Who has made man’s mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?
Pslam 139:13-16 13 For You formed my [i]inward parts;
You wove me in my mother’s womb.
14 I will give thanks to You, for [j]I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
15 My [k]frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the depths of the earth;
16 Your eyes have seen my unformed substance;
And in Your book were all written
The days that were ordained for me,
When as yet there was not one of them.
We still do not know a lot of what this syndrome means long term. We know that there will be complications. We know that Mila will look different both in her size and in her appearance. What we do not know is when, how or in what way all the complications you read about will manifest itself.
So let's start with the silver lining. The first is that we were about to have brain surgery to decompress the effects of the Chiari malformation. The Surgeon said that the genetic results would not change his recommendation to move forward. This is a blessing because we now know that the surgery could have created trauma to her little system and the underlying "Fibrosis" could have created scar tissue on her brain making for a severe situation and hard recovery.
The other sliver lining is the discovery of Michelle's BRCA 2 gene. If this is news to you I am sorry but as part of the lab testing, geneticist order tests of parents as a secondary finding for the child. What was found is that both Mila and mommy have BRCA 2 and those with it are more susceptible to cancer. This is scary. The silver lining is that now we know that we need to be on top of it, or be more proactive with removing the threat... In essence, Mila (Our Angel) could have saved Michelle from cancer or worse.
Genetic testing is intricate to say the least... It has been described to us as our body is like a library, our genes are books and the sequence is a sentence within the book. So when they do a full Exome sequence (which we did), you are looking for a misspelling in a sentence within a book. When a misspelling is found you cross reference the families genes to see where the misspelling came from. In this case Mila's syndrome it did not come from Michelle nor I and is thus called a De novo gene mutation. This is another silver lining... This was a God thing.
We believe that God is Sovereign over every situation. Over why we are in Texas, why I am lucky enough to be married to the greatest woman on earth, why Trump is president and even why Mila's life is in danger. We can't question God, we can only hope. I believe the range of emotions is part of the natural grieving process. The anger I felt toward God is common. The confusion we all feel are probably so we search for significance in this situation.... In the end we do not know the why but only the WHO. God is the who and although I struggle to write this, he Loves us, he wants this for His Glory in this World. That we can trust.
Michelle and I are outwardly Christian. We try to live our life in accordance with God's Will. We want to be the greatest parent's, friends, sons/daughters, siblings, etc. by way of Loving through our faith. If we say that Jesus is Lord we MUST believe that His Word is true. If everything the bible says is absolutely true than we must read things like:
Exodus 4:11 The Lord said to him, “Who has made man’s mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?
Pslam 139:13-16 13 For You formed my [i]inward parts;
You wove me in my mother’s womb.
14 I will give thanks to You, for [j]I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
15 My [k]frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the depths of the earth;
16 Your eyes have seen my unformed substance;
And in Your book were all written
The days that were ordained for me,
When as yet there was not one of them.
Then if we read John 9:2-3: His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.
and believe it!
We must, as part of the faith we confess and live out, believe that in God's grand design this is for our good and His Glory. This is the problem with suffering. When you are in the midst of a trial you may know something but your heart may not correlate. So in this instance I may be typing something to convince my heart what is truth. God is truth! His Word is perfect! He can be trusted because He loves us! He loves Mila! In some unfathomable way, that we will not know this side of Glory, this is our story. So... we need prayers to be proactive, to be wise, to be faithful and to be strong. My wife deserves the best version of me. Our kids need the best and most present parents possible. Our Mila needs strength for the road ahead. We all need HOPE. All this only comes from our faith and the perfecter of it... Jesus come.
Today we are taking it one day at a time. We need to figure out the best specialists and meet with them. We need to talk with insurance to know what is covered. We need to contact foundations and other families to prepare ourselves. The hope, for this day, is that we get a clean bill of health for both Mila and Michelle (Appt on Thursday). As we live this day-by-day we are resting in the fact that God gifted us Mila, we are her parents, by His great design, and we are to use this situation to Glorify Him even in our suffering.
and believe it!
We must, as part of the faith we confess and live out, believe that in God's grand design this is for our good and His Glory. This is the problem with suffering. When you are in the midst of a trial you may know something but your heart may not correlate. So in this instance I may be typing something to convince my heart what is truth. God is truth! His Word is perfect! He can be trusted because He loves us! He loves Mila! In some unfathomable way, that we will not know this side of Glory, this is our story. So... we need prayers to be proactive, to be wise, to be faithful and to be strong. My wife deserves the best version of me. Our kids need the best and most present parents possible. Our Mila needs strength for the road ahead. We all need HOPE. All this only comes from our faith and the perfecter of it... Jesus come.
Today we are taking it one day at a time. We need to figure out the best specialists and meet with them. We need to talk with insurance to know what is covered. We need to contact foundations and other families to prepare ourselves. The hope, for this day, is that we get a clean bill of health for both Mila and Michelle (Appt on Thursday). As we live this day-by-day we are resting in the fact that God gifted us Mila, we are her parents, by His great design, and we are to use this situation to Glorify Him even in our suffering.
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