Diagnosis

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I am going to share a post I wrote for my own blog.  The background is that I am almost six month pregnant, and there are some concerns for the health of my unborn daughter, Sarah.  We have had to do many tests.  I am sharing this here because it struck me that fear in parenting is common to most parents.
-Beth

We got the results of the genetic test back yesterday.  We have a diagnosis.  Sarah has Apert's syndrome.

I am not going to lie.  I am more intimidated by the diagnosis than I anticipated.  I have been reading about the syndrome.  The genetic counselor sent me a number of resources.  Some are medical, and they describe what the diagnosis means from a medical perspective.  Some are personal.  There are a number of different websites put up either by people who have Apert's or by their families.  It is simultaneously encouraging and intimidating to read these stories.  

There seem to be a wide range of potential symptoms for people with Apert's.  

"Do you not know that your body is a temple of the holy Spirit within you, whom you have from God, and that you are not your own?"  1 Corinthians 6:19

We are each temples for the Lord.  There are a lot of wonderful teachings about how to interpret that verse.  The context of the verse is sin and immorality.  We are told here that we must avoid sin, not just because we fear Hell, but because we are temples.  We care for our bodies with the same diligence that would attend our care for His home.  

But let me take you back a step, to the old Testament verse which got me thinking in the first place:

"Then David said to his son Solomon: "Be firm and steadfast; go to work without fear or discouragement, for the LORD God, my God, is with you. He will not fail you or abandon you before you have completed all the work for the service of the house of the LORD.""  1 Chronicles 28:20

I was looking for an answer to my fears, and that is what I was given.  I have a friend who keeps reminding me that our children are not our own.  We are just stewards; they belong to God.  We do the best we can to teach, form, raise and love them.  But ultimately, the work is for the glory of God.  As we raise up our little temples, teaching them to hold God in their hearts, we are doing the work Solomon set out to do.  And God is with us as we do it.  "Go to work without fear or discouragement."  That is what I needed to hear.

Comments

  1. Anonymous3:10 am, June 04, 2011

    Thankyou for sharing this...we will all keep you in our prayers. What are the main symptoms of this condition? I'm re-reading a book about Jean Vanier & L'Arche where the handicapped are very special...God bless..

    ReplyDelete
  2. Unknown6:40 am, June 04, 2011

    Prayers for your little one and your family as you accept this gift and go to do the work God has given without fear or discouragement,
    God bless.

    ReplyDelete
  3. Autumn7:08 am, June 04, 2011

    Praying for you, your little one and all your family. May God's presence be with you all, to guide you through this and bring healing and hope to all your lives in whichever way He chooses, and knows is best for you.
    God bless,
    Autumn xx

    ReplyDelete
  4. Helen Gonsalves7:20 am, June 04, 2011

    Thanks for sharing. May graces and blessings will be given to you at this time. You and your family are in my prayers.

    ReplyDelete
  5. Marie7:35 am, June 04, 2011

    "Even the very hairs of your head are all numbered. Fear not therefore"
    Luke 12:7

    ReplyDelete
  6. Unknown11:15 am, June 04, 2011

    Thank you for your encouragement and prayers. It has been only a month since we heard that there might be a problem, and we have kept a relative peace since then which I am sure is due to prayers for us and our little one.

    Apert's has a wide variety of symptoms. The most common are mostly cosmetic- Apert's children, from what I have read so far, endure a lot of surgeries. Fused fingers, and sometimes toes, and facial abnormalities are typical. Heart and lung defects are also possible. We do not know what we are facing yet in that respect. Little Sarah's life will not be easy. Our doctors are keeping a close eye on both her heart and her lungs, both of which have showed potential problems. The lungs are the more serious concern, at this point. We have a (second) MRI in just over a month to look at the lungs carefully- we are doing the extra testing because the worst case scenario is bad enough that I would not be able to deliver at the local hospital because the NICU is not advanced enough. We are not dwelling on the worst case scenario, but I do want to be prepared so that my little girl gets the care she needs.

    ReplyDelete
  7. EC Gefroh10:20 am, June 06, 2011

    Beth Cecilia:
    Thank you for sharing. I will be praying!!

    ReplyDelete

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