Judson's Legacy

Fear-Stricken Heart

I freaked out this morning in a severe and irrational manner.  I have never been much of a worrier nor a very anxious person, but my fears have been in full force today.

The other day we were in Starbucks and Jessie tripped and fell three times—one time banging her nose on the edge of an end table.  This last week there have been several times when she awoke from her sleep uncharacteristically screaming for no apparent reason.  Furthermore, she’s been more fussy and tired, but not showing any signs of a cold or flu.

These were the three initial symptoms Jud had at the onset of Krabbe disease; stumbling, screaming in his sleep, and behavioral challenges that were not typical of our boy.  Furthermore, my little lady is now 27 months old and is getting very near the age when Judson had his onset of Krabbe symptoms (29 months old).

As I was interacting with Jessie after breakfast this morning, and she seemed particularly out of sorts, I lost it.  I started bawling and was practically ready to jump in the car with her and drive all the way to Los Angeles to have her blood drawn for more testing. 

It is as though I am desperate for proof that my precious little girl isn’t going to be plagued by the same wretched fate of my Judson.  My beautiful boy was just as vibrant, healthy, and whole as Jessie at this age, but little did we know he was on the brink of dying.

When Jessie’s blood went to the specialized lab in July 2007, there were two different tests that confirmed she does not have this wretched disease.  The most definitive test indicated that my gene mutation for Krabbe was not present in Jessie’s sequencing, which would make it impossible for her to be afflicted by the disease.  Therefore, unless the blood they tested was not actually our Jessie Girl’s blood, then the results are definite—Jessie does not have Krabbe disease!

So, why is the certainty of the doctors evading my fear-stricken heart?

In talking with Drake and my mom, they both expressed that they too, have similar fears for our Ladybug; I realized that we are all dealing with an awful, but natural by-product of our journey.  Because we are intimately acquainted with this hideous disease, and we experienced its destruction, we are bound to be afraid that it will touch our beloved Jessie Girl, just as it did our Jud Bud.  Our past journey precludes the ability for any words from a doctor to completely obliterate our worries.

Jessie’s life feels fragile to me right now, more fragile than usual; whether founded or not, I am terrified of losing my daughter too.

“Do not fear, for I am with you; do not anxiously look about you, for I am your God.  I will strengthen you, surely I will help you.  Surely I will uphold you with My righteous right hand.”—Isaiah 41:10



9 Responses to "Fear-Stricken Heart"

  1. Mary Moraites says:

    Hey Christina,

    Do NOT LET THE DEVIL FOOL YOU GUYS. He is the master of destruction, lies, terror and worry…and I can go on and on. You had Jessie tested like you mentioned, last year. It is not a mistake. Do not let the devil put this terror in your heart, because as Christians, he will try and flatten you down to the core.
    Jessie IS HEALTHY AND DOES NOT, AND NEVER WILL SUFFER from such a dreaded illness.
    Sometimes little kids have bad dreams, which they cannot explain, and are puzzled at times from them, and may act strange. There is nothing wrong with your little lady. Take it right out of your minds, all of you! She is a healthy, beautiful little girl and that’s the way she will grow up.
    Do not fall into this trap. It is because of your loss of Jud, and fears, you are troubled so much, giving the devil a foothold on you guys.
    NO! No! NO!.Do not even think about it, even if you think Jessie is sort of acting out like Jud did.

    May the Peace of Our Lord Jesus Christ be with you all, and keep you well and out of fears in your hearts.
    I will and have been praying for you all since I read about Judson’s story. The yellow rose for Jud’s memory, is always accompanied with my mom’s flowers that I take to her grave every other day.
    Take care you lot,
    lots of love,
    a friend from afar…( Athens, Greece)

  2. Rebekah says:

    Oh Christina, I’m so sorry to hear about your fears for Jessie. I suspect that the doctors’ tests were accurate, particularly since TWO tests were done… but might it be worth the peace of mind to have her tested again?

    I will be praying for Jessie’s health and for your peace! Can’t imagine the anxiety that comes with even the smallest concern for Jessie.

    A verse that comforts me when I am troubled comes from (I believe) Psalm 4…

    "I will both lie down and sleep in peace,
    For You alone, O Lord, make me to dwell in safety."

    I mentally expect that Jessie is perfectly healthy, but emotionally, I understand your worry, and will be praying!!

  3. Kris says:

    I cannot claim to know anything about Krabbe, as the only experience I have had is reading your blog. However, could Jud’s waking from sleep screaming (and now Jesse’s) and his acting out (like Jesse is now) simply be attributed to the fact that he was 2 (as she is now)? I have experienced both of these things with my two children (Maddie is now 6 and Jack is 3). Just in the past couple of days Jack has been displaying both of those behaviors.

    I second the sentiments of the other poster and pray that Satan does not use these similarities to drag you down.

    I know that nothing can calm your fears as much as God’s comfort, but I hope you are able to comprehend the truth of Jesse’s health in your heart as well as your mind. May God’s truth invade you.

    With much gratitude for your honesty and openness,

  4. Jean and Gary Butler says:

    Dear Christina~
    Love your heart….we can surely understand why you are concerned about Jessie Girl.We do TRULY believe that Jessie DOES NOT have Krabbe’s disease; but God does give us the wisdom to seek a doctor’s guidance when we are unsure. Perhaps you could call Los Angeles and just ask them a few questions. Just seek God’s wisdom before you call. Keep us updated; but don’t let that old devil get you down either.
    We love you so much!!!!!!
    Jean and Gary

  5. lisa taylor says:

    Christina, I can only imagine what you are feeling. Life just wasn’t suposed to be like this , was it? I am so sorry my dear friend. I think the fear will be ever present in our hearts always. I think it is OK and unavoidable. It is just the way it is for us now. Just having the fear for your sweet girl, shows just how deeply you love her. It is your mommy’s heart that is showing so strong.

    I am starting to panic as well. I can not block it out of my mind. I just have to deal with it as it comes. That’s it, no more no less. I suspect that the first 8 months of this babies life will be difficult for me.

    From one bag of cement to another, I love you!
    Lisa Taylor

  6. Tara @ kidz says:

    Thank you for this post. I’m sorry you have to deal with this type of stress, but you are looking to the right places for your answers. Thank you for inspiring and uplifting me today. I loved the scripture.

    Found you through CWO and I’m glad I did!

  7. Dawn Mills says:

    I can relate to your fears. I often worry about Dalton…even though we were told that he only has one of the mutations and that it "should have" presented by now if he did have it. Once the untinkable has happened once and you’ve lost one of your precious children, it’s so hard not to face such fears. It’s hard to fend off the "what if the test was wrong". I can only imagine how great the fear is as Jessie approaches the age that the disease showed it’s ugly face to Jud. I pray that you can find some calm and peace in knowing that Jessie does not have this ugly disease…but it’s gotta be natural for a mother’s heart to experience this.
    With Much Love…
    Makinley’s Mommy

  8. Lindsay says:

    praying for peace for you.

  9. Ksenia says:

    Kristina, I can understand you.
    Because I, too, am a "half-special" mother.
    My elder son, Michael, has moderate development delay (he’s 2 y.o. now and still cannot walk). But, it’s not a cerebral palsy as many people think. It’s typical for the period of recovery after severe and rare disease that Misha (Russian for Mike) has in his 6 months. The name of his disease is infantile epilepsy. And it’s more painful to know that epilepsy came to us after one medical mistake – a doctor prescripted a medicine for Misha that poisoned his brain 🙁
    But – it’s that our doctors say. Are they right? The genetic specialist said that there’s NO data for gene mutations, and I’m worrying. Elia, the younger son, cannot he go through the same horror?
    Elia turned 6… 7… 8 months… I remember my fear – as I looked how Elia sits, and crawls, and stands, I tried to notice – are his movements "from brain" or cannot them be spasms? It was like I turned crazy.
    But – you DID make the research of Jessie’s genes, as I’ve read here in your blog, and even not once. She has no that awful disease. I also agree that f you have any medical questions concerning that research, you can always call to Jessie’s doctors and ask any questions.
    Take care,

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