pain & perspective: my journey with down syndrome…

Thursday is the day.  Surgery Day.  A day we have come to both dread and look forward to, because it is the key to our little warrior coming home.  The dread comes for obvious reasons… anesthesia, cutting him open, the pain afterward, the risks, etc.  But the positives seem to be pretty clear and presented by The Lord.  The g-tube will allow our boy to be fed after he physically runs out of gas and cannot eat.  The nissen will limit the reflux and thus save our son from the burning pain in his throat and sinuses.  But with the positives also come the doubts of whether our babysitter will be able to handle the g-tube feedings, or whether it will become a crutch for our boy, or whether we will become addicted to it by allowing it to be a way for us to feed him all night and thus get the sleep we desire but possibly rob him of the struggle of learning to eat by mouth.  And of course the ever-present threat of infections and such will be a constant companion until the g-tube is gone.

This entire journey since January 7th has been one of ups & downs, fears & assurances, lacks & provisions, strengths & weaknesses, selfishness & selflessness, loneliness and welcome, positives & negatives.  Almost every decision we have made has had a side of doubt and question.  And almost every step seems to have been shadowed by a unspeakable dark side of “what could happen” that no one talks about but still brings such a heavy weight on your heart.  We have seen The Lord move in such amazing, incredible, loving ways, but yet my heart still fears that grace will end at this next hurdle. me not, O gentle Savior,

Hear my humble cry;

While on others Thou art smiling,

Do not pass me by.

Savior, Savior,

Hear my humble cry;

While on others Thou art calling,

Do not pass me by.

Let me at Thy throne of mercy

Find a sweet relief,

Kneeling there in deep contrition;

Help my unbelief.

(Pass Me Not, Fernando Ortega)

I have raised the white flag to The Lord and begged Him “Enough!” but yet He tells me to keep walking.  So I keep moving ahead, facing each day.  Somedays I am so numb that I cannot remember what I have done.  Other days I feel so strong that I want to cry out “Bring It On!!” because I feel like I can face the world and win every battle.  Each day I have failures and victories and yet they all feel so meaningless compared to my family.

Hearing my son JT giggle seems so much more precious.  Cuddling with my little princess Abbie fuels me and fills me.  Laughing and talking to my buddy Zach keeps me going.  Simply watching TV with my bride becomes my priceless goal at the end of each day.  And holding my little Timothy on the weekends is my lifeline, the thing that keeps me going through the week.

I love my job, and I love completing projects and serving people at work, but this difficult three month journey has also given me a new perspective that I had forgotten.  One that I pray I never forget, especially when life “returns to normal” someday.

For the first time in our marriage, Treshia & I have felt a shared peace when we make a decision that is from The Lord.  We have learned to talk to each other, pray together and wait for The Lord to give us a peace about one decision or another.  And that peace allows us to stand by our decision united.  We also have learned to trust The Lord more and not try to make everything happen on our own.

I have been a Christian my entire life and have heard every cheesy cliche about “trusting The Lord” and how “He will provide for all my needs” but I have never experienced it.  Or at least I have never let God deliver me, provide for me and be my only source of strength.  It has been me doing it.  But through this journey, I have not had the strength to continue and do it all.  I just can’t do it.  But yet The Lord has somehow kept me moving and fighting.

For the first time, I can honestly say it was my Father who gave me the strength.  Going forward, I pray I can remember that I can truly and fully trust Him to give us wisdom, strength and what we need each day.  Sometimes it will literally be just enough to get through that day and no more, but He will.  He really will.


~ by kuiperactive on March 26, 2014.

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