Welcome to the KingZoo and Funny Farm, where we learn to live, laugh, and love together. Here you'll find snippets of life in our zoo, parenting tips we've learned along the way, reflections on shining God's light in this world, passions in the realm of orphan care and our journey as parents of a visually impaired child. Have fun!

Wednesday, September 18, 2013

Open my eyes that I may see

This blogpost is written with a heavy heart.  Heavy, yet not hopeless.  The tears grieve a loss but even while looking through them I can tell you beyond a shadow of a doubt that God has amazing plans for Victor's life and that He is going to use him in significant ways.  We know that we were called to be his family and as his family we fought for him and will continue to fight to give him every opportunity to be a vessel of God's light, using His gifts for the One who created him just as he is.  Adoption is like marriage; for better, for worse, for richer, for poorer, in sickness and in health.

We just received the devastating news with a diagnosis on his eyes.  Victor's eye exam which had been scheduled for next Monday was moved up to today because the doctor felt it was necessary to see him earlier rather than later.  John was able to rearrange his schedule to take Victor.  I am so thankful for this as these torture sessions are very difficult for me.  God also ordained for John to hear the words from the doctor and to be the one to give them to me.  I am also thankful for that.

Even though the doctor did say that Victor reacted to light at the last appointment, I've had my doubts.  Sometimes he seems to do so, other times he doesn't.  I've even seen him "look" directly at the sun with no reaction.  A therapist this week also pointed out that when you move your hand quickly toward his face, Victor does not blink or turn away.  She explained some of the optic nerve to us and that was very helpful.

The pediatric ophthalmologist's tentative diagnosis is bilateral optic nerve hypoplasia with "significant visual impairment."  At this point, you probably know as much about this as we do but that is about to change. Here's a summary.  We are about to become central PA's leading parental experts in this condition.

Interestingly enough, there is no connection between this diagnosis and Victor's prematurity.  There is likely no explanation.

While we are grieving this diagnosis as well as grieving an "easy" or "normal" life for Victor, we love him no less than before this news.  In fact, I think we'll all hold him a little tighter today.  Only time will tell how much vision he actually has and if he is affected in any other ways.  God has plans for this little boy.

Please pray for us today.  Pray for Victor as he recovers from yet another eye exam that leaves him exhausted.  Pray for us as we see more professionals in the coming days, including a pediatric endocrinologist.

Pray for minimal neurological, adrenal, and even visual impairment.  Pray for miracles.

Pray for me as I determine how best to share this with his birth mother who loves him dearly.

Pray for each family member who is going to have to grieve this and work through it in different ways. Pray that this brings us all closer and that Satan would not be allowed to use this to drive a wedge between any members of this family.  Pray for extended family members and friends.  They didn't receive the call or choose adoption; we did.

And already, we see God at work.  In our early intervention meeting a few weeks ago, we discussed the concerns about Victor's eyes.  Without a diagnosis at the time, we didn't qualify for vision therapy but it was decided that they would try to assign us a developmental therapist who is also a vision therapist.  And it is so!  We saw her, along with our physical therapist, for the first time on Monday.  We love them already!  She is the one who noticed that Victor doesn't flinch when an object approaches his face.  Since she has 20 years experience working in a school for the blind, we know that she is God's gift to us for these next days, weeks, and years until he is no longer in early intervention.

I want to share one more prayer request that is one we don't talk about a lot.  We were assured by the hospital social worker (in Utah), even before saying yes, that Victor would be able to qualify for medical assistance because in his words, "Not even the wealthiest family can afford a NICU stay."  However, we were initially denied.  Paperwork was resubmitted and just last week we learned that it has gone from supervisor to supervisor but no decision has been made.  As you can imagine, those hospital bills keep coming and they are piling up quickly.  And now we know that there will be many more doctor's visits and tests in Victor's future.  We will do this and we will do this with joy, but we do not like having this hanging over our heads.  It is possible that this diagnosis will speed things along and that will be very helpful.

Thank you for walking this journey with us.  Continue to pray for our Victor Noah, that he may live up to the name he has been given - Victorious Long Life of Faith in the One True King!

"Open my eyes, that I may see
glimpses of truth thou hast for me;
place in my hands that wonderful key
that shall unclasp and set me free.
Silently now I wait for thee,
ready, my God, thy will to see.
Open my eyes, illumine me, Spirit divine!"
-Text and music by Clara H. Scott



3 comments:

  1. I will pray for miracles. The Bible study I'm doing (Priscilla Shirer's "Gideon") had a very moving topic for me these last few weeks: "If you want to see God's work in your life, you have to put yourself in a situation in which His miraculous intervention is required." And so it is with adoption; and so it has been every step of this journey with Victor. And every step of the way, God has shown up in a big way. He will show up in this, too.
    You and your family have put yourselves in a prime position to be able to see God move in real, tangible ways, which will serve to testify to the world that He is real, alive, and current! That is no small thing. It's not easy, as you've told me, to care for people "in their distress" but that is the calling. It's not easy on our friends and extended families who have not been called in the same way; and, so, I will pray for peaceable, dialogue amidst those relationships that is encouraging and uplifting to you and your family.

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    1. Thank you, Rebecca. During the months leading up to Victor's adoption, the younger children and I did Batterson's 40 Day Prayer Challenge where he says similar things. It's a good reminder. Thank you.

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  2. Oh sweet Victor. I just want to give him a big hug! We miss having you guys in our NICU. Your family, especially Victor will be in our prayers!

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