My infant son was loved every day of his too short life

This is a guest post by someone who has  known me since I was 18 years old…Kimberly Potter, a friend from college and a reader.  Her story is heart-wrenching but also full of hope.  It is a privilege to share Kimberly’s guest post with you today.

The journey for me to become pregnant was long, involved, and costly on many levels.  However, when my husband and I learned I was pregnant, it was all worth it.  While over the moon happy about finally becoming a mother, we went in for the 18 week ultrasound to learn we were expecting a son.  Only moments after seeing his little feet and hands for the first time and hearing his heartbeat, the doctor informed us it was highly likely our son would have a rare genetic disorder we had never heard of, tuberous sclerosis (TS).  TS can impact people differently, ranging from minor skin adhesions to significant developmental delays and seizures.

We prayed for our then unnamed son, prayed that he would not have the condition, prayed he would be spared, prayed he would be healed.  I believed God could do all of this. I also cried out to God.  Really?  After all of this?  Why?

Perhaps you’ve felt the same way before and asked God “Why?” too.  Maybe you went through all the steps of interviewing for a job, but another candidate was chosen.  Have you ever seen good people be afflicted again and again with physical issues through no fault of their own?  Or maybe you have seen your own children fight obstacles only to be struck down again.  We all ask “Why?”

I cried most days from then on, afraid.  I started researching resources for patients with TS, early signs of TS.  You name it, I researched it.  I worried a lot about his life  . . . and ours.  I did not know if we could do this.

On the day our son was born, we were surrounded with literally a dozen medical professionals.  I saw our little boy briefly before he was swept away to the NICU.  However, amazingly, he checked out completely fine and we were able to take him home just a few days later.  I never knew how much God loved me until I held my son.  I had never felt that much love for anyone ever.  My heart hurt I loved him so much.

Then on September 6, 2009, at only 3 months old, our beautiful son unexpectedly died from a very rare complication from TS.  He died right in front of me as my mother performed CPR on him and as we waited for the ambulance.  I felt completely helpless and hopeless.

I don’t know if there is anything worse than losing your child. I would not wish this experience on my worst enemy.

While I would like to say I turned immediately to Jesus–that would be a lie.  I was too mad.  Again, I could not believe God would make us wait so long to be parents to then take our son away.  This was not fair, this was not loving.  God couldn’t do that to us.

In those immediate days, I clung to one thing.  I wanted to see my little boy again.  I believed he was in heaven with Jesus.  I knew that with 100% certainty, so while I could be mad at God, I could not turn from Him.  I came to the uneven truce of being completely ticked (not the real word) at God but knowing I could not make it through where I was without Him.

A verse that I held fast to was Isaiah 41:10:

So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.

I never felt God’s supernatural presence or comfort BUT God ministered to us through His people.  My family, my friends, my church, my pastors, and people I did not really know reached out to us in a million big and small ways. Individuals showed up to be the hands and feet of Christ to us.      

Christ ministered to us through family who immediately jumped in their cars late at night to be with us, not even knowing how serious it was.  Neighbors and friends who met us on our doorsteps on the night our son died to hug us and cry with us before we walked into our all too quiet house. Dear friends came to stay with us and help us with arrangements. People fed us, cleaned our house, and put our son’s things away for us to go through later.  Friends, family, coworkers, and church members filled the church to capacity to show their love and support.  Individuals shared through notes and cards that they too had lost a baby.

The nurse at the hospital on the night my son died insisted that my mother be examined.  Due to the nurse’s care, we learned that my mom had a stress-induced heart attack.  Without the nurse continuing to insist that she be examined, my mother would have likely passed away in her sleep.   She thankfully recovered after a month of complete rest.

While our son was with us during the summer of 2009, we never really knew if he had TS.  He was not symptomatic so we hoped that he was in the minority of individuals who had the physical marker of the genetic disorder (seen on the ultrasound) but who did not have TS.   We were worried but we were able to love on him, hold him, take him places.  He spent every day of his all too short life with people who loved him.  For all practical purposes, he had an amazing life.

After our son died, we learned he did have TS and he would most likely have lived a difficult life.  We had prayed daily for him to be spared or healed.  My husband came to the realization one morning when he was crying to God that God had done as we had asked.  We prayed our son would be healed and that is what God did.  God healed our son.  It clearly was not the way we wanted Him to do it . . . but our little boy was healed.

We just passed the 7th year after his death. I can attest that God is faithful, even when you are mad at Him.  As He promised in Isaiah, He will strengthen you and help you and hold you in His righteous right hand. He did that for us. When people say they have no idea how I survived, I try to be clear – it was only by God’s grace. He gave me enough strength to make it through each day. Sometimes barely enough, but enough.  Also, I learned that when He nudges you to do something for others, you may be serving as Christ’s hands and feet on earth.  When I could not feel God, I could see him working in my life through the people He placed around me.

Kimberly Potter is the mom of twin daughters born in 2011.  They are sweet, loving, imaginative — and drive her to distraction at times –but are loved beyond measure.












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