Be Right Here, Right Now

Ani and Jeremy Karg are the parents of four daughters, Madi – 9, Selah – 6, Veiyah – 1, and Aderah, Veiyah’s twin, who passed away on Sept 10, 2008 before she was born.  Veiyah and Aderah were born on Sept 25 2008, Veiyah with serious heart complications.  Veiyah is fighting her battle daily, and from the sound of her at home in the background during the interview for this story, she is up for the fight.  Over the past year, Veiyah has had several emergencies, and right here, right now, she is doing well.

Veiyah at age 3 weeks, at her first BT shunt surgery

As Ani and Jeremy went through these emergencies, and before Veiyah had her first shunt implanted in her heart, the chief surgeon told them that they needed to be in the present moment each day with their sweet Veiyah, don’t hold her back, let her live her life in her own way, at her own pace.  He told them to live in the moment.

Ani and Jeremy have learned the most important thing for them as a family is to “Be Right Here, Right Now.”  They don’t spend time contemplating the future – there is not time with their busy household of three children, one who needs constant care.  And, they don’t want to think about what the future holds because they know that their lives can change, literally, in a heartbeat.  What they do focus on is making sure Veiyah has all the opportunities for improving through surgery and medication.  They trust in God, and they trust their doctors to find the best possible answers.  They focus on their family in each moment, drawing close together, supported by extended family, friends, Jeremy’s work colleagues, their church in Cedar Rapids, Iowa, and the Erika Kate Foundation.

How their lives have changed
Ani and Jeremy believe strongly that in the midst of this storm over the last year they have grown closer in their marriage, have grown in their faith, and that Madi and Selah have matured beyond their years.

The family is surrounded by love of family and friends, and at the same time the family is isolated by Veiyah’s condition.  Because exposure to germs is a high risk for Veiyah, the family can’t go out to do those normal family activities that we all take for granted.  Madi and Selah are home-schooled, which helps keep the exposure to the outside lower for Veiyah.  Ani had already been homeschooling Madi for a few years before the twins were born.  She now knows that it was part of her preparation to prepare a safer home for Veiyah.

Everyone, including Veiyah’s older sisters, help with the caretaking.  With such traumatic events happening in their lives, Madi and Selah were forced to grow up early.  Although Ani feels guilt about that, she knows it is out of her hands.  She said it is amazing how Selah talks about Aderah in her every day life.  It makes Selah cry, but it is part of who she is, and she takes Aderah wherever she goes.  Both sisters want to grow up to be a doctor or nurse.

Ani and Jeremy kept the older girls close to them as the tragedy unfolded.  Whenever possible, Madi and Selah were at the hospital, staying close by.  It was important for Ani and Jeremy to make sure their older daughters felt needed, that they were a priority, and that they felt close to their parents as the family was reeling from each new emergency.

Support from others
Ani and Jeremy are grateful for the support they have received from others.  Their extended family has helped take care of the children and provided financial support. Jeremy’s colleagues at work donated their vacation days last Christmas so that he could take more time to be with his family.  They also held a fund raiser for Veiyah.  Their home church stood behind them providing support with love offerings, constant prayer, and being available at all times.  The Erika Kate Foundation provided financial support for lodging in Iowa City and also helped pay a months mortgage.  Neighbor’s raised money with a lemonade stand.   The Karg’s feel surrounded by love and support.

Ani said that in the past she had not known what to say to someone who had lost a child.  Now she knows that it is good to ask questions, to talk about how they are doing.  They welcome questions about Aderah and Veiyah.  It doesn’t hurt to talk about it.  “We are still who we are – and we love to talk to you.  We are seeking it now more than ever”.

Jeremy talked about the best way to provide support.  “During the difficult times over the last year, we have had people ask us numerous times if there was anything they could do to help us.  Most of those times we were in such a grief stricken state that we could not communicate the things that people could do to help.  I would encourage people reading this that if you know people or have family that are going through a loss of a child and/or the struggles of a disabled child, to not just ask what you can do, but sometimes just DO.  In the middle of our struggles it was the things that people did without asking that meant the most.  That showed us that they really cared enough not just to ask us what we needed, but to really try to understand what we were going through and to make an effort to help out with action.  We have also encountered the sentiment from family/friends who feel like they need to give us space during trials, or do not want to talk to us about difficult situations such as the loss of Aderah, because they think that is best for us.  I can understand these feelings, because my thought process was the same before going through the trials of the last year.  My encouragement to others in this area is that it is healthy to talk about difficult situations and feelings of loss.  If there are times when we don’t want to have those discussions, we will tell you.  Be willing to be close to your friends and family during their trials.  Be willing to talk openly about the loss of someone close.  Be willing to visit a gravesite and be bold about your commitment to remember and honor a friend’s or family member’s loved one.  For me, there is no greater show of support then to know that people love, honor, remember, and respect the lives of Aderah and Veiyah.”

The Kargs feel that along with this support, God has “held” them, made them feel more secure, and given them courage for the road ahead.   Knowing that they have the love of God, family, and friends for this journey allows them to live in the moment, meeting each day as it comes, loving each other, clinging to God, and praying for miracles.

The Kargs have a beautiful blog that gives current updates on Veiyah’s condition, as well as the history of their journey.  http://www.kargfamilyupdates.blogspot.com/.