Young Mother Cares for Son With Rare Seizure Disorder

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Karen is a young woman who got pregnant at 16 and has been pretty much on her own ever since. The father never even saw his child, and her parents weren’t supportive of her situation. Fortunately, she did have one cousin who supported her. Her son, Wesley, was born when she was seven months pregnant, and he had to stay in the Neonatal Intensive Care Unit for two months. He has a rare seizure disorder, called KCNQ2, and he averaged ten seizures a day initially. Then when he was two months old, he stopped breathing and was brought back to life with CPR and a ventilator. Quite a lot for a young person to handle alone.

This amazing young woman somehow completed high school while caring for him and waitressing. She felt completely isolated, depressed, and overwhelmed. Plus, she blamed herself for everything and harbored a lot of anger. Her mother told her not to cry, so she didn’t. Instead she held everything inside. This is the first time she has told her story, and it was very cathartic for her.  It is her hope that by sharing her story, she will touch other young mothers who may be in similar situations.

Fast forward to today. Wesley is four years old now, can’t walk or talk, and is in a wheel chair. He is in a special program at school for four hours a day. She said that whenever she takes him out in public, people stare at them and that makes her angry. She has a new man in her life, who is very supportive. He works very hard so that she can stay home to care for Wesley and for their one year old daughter, Julia. His family has been very supportive too.

Karen says, “Wesley has made me a better person, and I look at life differently now. I don’t take things for granted.” Even though she is still very isolated during the day, she enjoys her daughter, who loves her older brother. Sometimes to get a break she goes out for a drive when someone else is there.

Karen is now 20 years old and finally has the emotional support she needed during those difficult days on her own. She has been a good mother and faced her numerous trials with help from God.

What Helps:

  • Going for a drive by herself.
  • Having Wesley in school for four hours a day.

Scripture Verse

Isaiah 41:10   Do not fear, for I am with you, do not be afraid, for I am your God. I will strengthen you and help you. I will uphold you with my victorious right hand.

Prayer

This single parent’s prayer seemed to reflect Karen’s situation when she was completely on her own.

By Matt Haviland, October 23, 2014, at www.1Corinthians13Parenting.com

Father,
I come before You today broken, yet humbled. Thank You my Lord for another opportunity to serve You; and although my circumstances may be far from ideal right now, they could not be in more perfect hands than Yours. Jesus, You call for all of us who are weary and heavy laden to come before You and that You will give us rest. God, my body and my soul both need rest right now. There are days I feel like nothing is going right; other days I am irritated and stressed beyond what it seems like I can handle; and there are times I wonder how I am ever going to make it on the path You have laid out before me. But then I reflect upon Your promises for my life. You have promised to never leave me nor forsake me; and that every good gift is from above. I believe Jesus has been tried and tempted in every way I have and that I can do all things through Him who strengthens me. And for that today, Lord, I am grateful. 

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Caring for a Father with Alzheimer’s Disease

 

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Margie gives this advice for taking care of a parent with Alzheimer’s disease: First, believe you can do this. Second, ask God every day to make you stronger than the previous day. Third, find something that takes you away from the daily routine.

Margie and her husband, Mike, cared for her father, Eduardo, from the onset of the disease, which began shortly after her mother died. Her father showed signs a few years before the disease progressed, but needed round-the-clock care for the six months before he died.

Her biggest struggle was time management with caring for her father, her own family, and working full-time. She says, “Mike, and I were like robots – we hardly took any time off, but our jobs were our escape.” But while her fellow workers were supportive, they didn’t know the full extent of the situation at home.

They did hire a caregiver during the day, and Margie and Mike took over at night.  Fortunately, Mike, was a tremendous support, especially since it wasn’t his father. Margie calls Mike her biggest blessing and adds that it made her marriage even stronger. Her 20 year-old son, Luis, saw “love in action” first hand and still talks about it today. She also had support from her brother, Jimmy, and the rest of her extended family.

Although they were overwhelmed, they didn’t focus on it because there was so much happening – they were “on” all the time and they were just too tired at night to reflect on it. It was completely exhausting for them.

Self-judgement was always an issue. They continually wondered if they were doing enough and thinking that they were not. Margie says, “Funny, time doesn’t make this better – I still question whether we did enough.” This is a common feeling with which most caregivers can identify.

There was never any question that they would take care of her father. Margie had lost her mother and two brothers, so she was very familiar with loss. She had promised her mom that she would take care of her dad. Her Hispanic background and close relationship with her mom made this decision an easy one when she was asked. It was something natural that she and her brother just knew was going to happen for the parents who had given them so much all of their lives.

Her father rapidly declined over the six months before he died. He became more agitated during conversations, was confused, and didn’t recognize them. They did have Hospice for a short while before he died, but that was still an extremely difficult time.

It was Margie and Mike’s strong faith and prayer life that got them through these challenges. Margie was a devoted daughter, who wanted to give back to the father who had loved her completely during her whole life.

What Helped:

  • Family support.
  • Her deep faith.
  • Her background.
  • Spending time together as a couple and a family.
  • A change of scenery, even going out into the garden.

Scripture Verse:

Mathew 19:26 But Jesus looked at them and said, “For mortals it is impossible, but for God all things are possible.”

Prayer

Dear Father, thank You for the blessings of a supportive spouse and family. Thank You for giving me the energy to care for a family member while working. You provided all that I needed, and You were with me each step of the way.

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