Barely Surviving, Trying to Thrive

My friend, Barb, has one of the most generous hearts of anyone I know.  She inspires others to love completely and with abandon.  I love her story even though it rips my heart in two.  She has similar strengths to mine and yet lives hers out in a way I could only dream of.  She is using her strengths to change the lives of some very special children.  What an incredible world this would be if we all loved like Barb. 


Melissa asked me if I would share my story.  I told her that it isn’t an “I am closer to God then I ever have been, my faith is so much stronger now, because of what I have learned, I wouldn’t change anything, and I am happy that my life has brought me to where I am today” story.  She said go for it!

In the summer of 1984, at the age of 31, I was enrolled in a program to become a Respiratory Therapy Technician.  As part of our training we did clinicals at Minneapolis Children’s Hospital.  There was a four-bed unit where kids who had so many chronic issues they couldn’t go home lived.  Because of their medical problems they ended up being in the hospital two or three years, having never been home.  One such kid was Jeffrey.  He was less than one year old and was the most beautiful thing I had ever seen.  He had multiple, multiple issues.  The nurses that worked with him said they wouldn’t let themselves bond with him because they were sure he was going to die at any time.  None of the other RTs wanted to do his treatments because of his complications and behavior.  By default every time I worked I was assigned to him.  And in the midst of it all, this African-American child and this chubby, single, white woman fell in love.

After about two years it was time for Jeffrey to go home.  His birth Mom was a lovely lady, who was single-parenting four kids already.  It wasn’t possible to add Jeffrey to her family and expect her to be able to do it all.  Wherever he ended up living he would need 24-hour care and would always have frequent doctor and therapy appointments.  The hospital tried it’s best to find an African-American family for him, (I used to say a Bill Cosby-type family, but that might not be such a good illustration now).  Families would meet him and then decide they didn’t want him because he would be too complicated to care for.  So once again, by default, I became his foster mother.  People have asked me why I wanted to be a foster parent.  I always tell them because I wanted Jeffrey.  If I had to be a foster parent to do that I would.  If I had to be a truck driver to do that I would have done that.  I loved him and wanted us to be a family.

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On May 4, 1987 my dreams came true and Jeffrey came to live with me! Not too long after that my Mom moved in with us and in April of 1988 Jeffrey’s hospital roommate, Ashley, came to live with us too.  To say that life was full would be an understatement.  There were so many appts for doctors, therapies, equipment, staffing, etc.  We had nurses coming and going, supplies being delivered, therapists coming, meetings, meetings, and more meetings.  But I was in my glory.  There were certainly hard times like a change in staffing, due to illness etc., meant that our plans/lives could change in an instant or that I wouldn’t be sleeping for the next 24 hours.  But every time I looked at Jeffrey I knew he was worth it.  I still thought he was the most beautiful thing I had ever seen and couldn’t get over the fact that he lived with me.  Depending on the political climate there were times when there were concerns because he was black and I was white.  But Jeffrey’s Mom and I got along well and so we rode out those storms together.  Of course my Mom also had worries.  Her biggest concern, other than people thinking I had had an interracial romance, was that no man would ever choose to be a part of this craziness.  I would tell her that if I ever did fall in love with a man he would understand why I am doing this and would go along with it.  “You will never find a man that wants to marry you AND the rest of the package that goes along with you.”  I started dating Larry in June, 1996 and we married on January 11, 1997.  I love you Mom.

I would love to tell you all the “Jeffrey” stories.  His one-of-a-kind things he did and said that made us love him so much- but that is for a different time. So we rolled along with the crazy life we had created, until Feb 10, 2000.  It was morning and Larry had just left for work.  I was getting Jeffrey up and he didn’t look right to me and I got nervous.  I called Larry and asked him to come home and take us to the hospital. We got in the car and rushed to Mpls Children’s Hospital, where they knew Jeffrey and us very well.  He was diagnosed with meningitis, which ironically he had gotten vaccinated against a year before.  He was in intensive care and was unresponsive by the end of that day.  Jeffrey’s primary doctor told us that Jeffrey had been to the precipice so many times and we’ve always been able to pull him back.  At some point we won’t be able to and this could be that point.  I kept asking God what it would screw up in this universe if He healed Jeffrey.  A beautiful boy with an IQ of 30, what harm could there be in letting him live. A couple of days later I left the hospital to spend some time with Ashley. We went to K-Mart where I got violently ill.  Taking Ashley home I got a call from the hospital saying I needed to get back.  I rushed back and the nurse, who had been at Children’s forever, said that Jeffrey had taken a turn for the worse.  She sensed that his spirit was gone.  I asked her what time it had happened and it was the exact same time that I had gotten so sick.  The doctor said that they would continue to do things “for” Jeffrey but not “to” him.  Family and friends came to say goodbye to him.  Our family was there and Jeffrey’s birth-family was there.  On February 15th we all gathered in his room with our pastor and their pastor and prayed and softly sang worship songs together. Then he was gone.

Both sets of parents and both pastors planned the funeral together.  Larry and I knew that if we could live through losing Jeffrey we could live through anything.  Nothing would ever hurt as much as this did.

The next few months were unbelievably empty and quiet.  Jeffrey was such a presence in our home.  It was like all the joy had been sucked out of our house.  We got a call the end of May wondering if we would be interested in taking a foster child for six weeks.  We agreed to meet him at the University of Minn hospital where he had been living for the past 14 months.  He was now 18 months old and his name was Michael.  He was diagnosed with a non-accidental traumatic brain injury that happened when he was two months old.  Unfortunately his teenage parents didn’t take him to the doctor until two months later, where was diagnosed with skull fractures, internal bleeding and the list went on and on.  Their original goal was for him to be able to roll over in bed.  But he was super cute with a round face, glasses and black hair from his Native American heritage.  I, of course, was ready immediately to take him home.  Larry took a little while longer but eventually he saw the light.  Michael and I were a good pair.  He cried and screamed a lot and I was crying most of the time.  We went to the U two to three times a week for therapies (speech, occupation and physical) and there were always doctor appts so we were pretty busy.  I had read that when we lose someone it is like a garden that has a hole in it.  You can’t replace what used to be there, but there is still room to grow something else in that garden.  I guess that’s how I felt – my heart would always be broken but it was possible for new love to grow there.


About a year or so later when the time came to talk about adopting Michael I was ready.  My dear Larry again took more time.  So the adoption was set for June, 2002.  In the beginning of March that year our Social Worker called again and asked if we would be interested in taking a child for six weeks.  He was a 10-day-old baby with spinal bifida named Neanasckea.  You know the drill – I said yes right away, Larry needed time.  We brought him home when he was 19 days old.  I had a baby!  At the age of 49 I was the one with the new baby that everyone ooed and awed over! Even though people often asked us if we were the kids’ grandparents I was in motherhood heaven.  Larry had always said that he wished I could experience having a baby but not in his house!  He had four kids from previous marriages, add in Ashley and Michael, and our Jeffrey in heaven, for some reason he thought he was done! What foolishness.

We adopted Michael June, 2002.  And, of course, when the talk of adoption for Neanaskcea came up I was ready but Larry was not.  This little guy was paralyzed from the waist down, would always be in a wheelchair and his bowel and bladder didn’t function right so he would always need someone to do those cares for him.  Larry was afraid this boy would slow us down (he was so wrong!) but his love for this child won out and we adopted him in 2004.  Because we were adopting him we were able to pick a different name for him.  I suggested all kinds of Biblical and Sport Celebrity names but Larry was unimpressed.  Finally he said how about Jack?  I thought how wonderful, my Dad’s name was Jackson and how sweet it was for Larry to consider that.  I told him how much that meant to me and he said that he picked the name Jack because of the song Hit the Road Jack!!!  Larry seriously does not know when to keep his mouth shut.

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So we had Jackson Tyrone (Jeffrey’s middle name) Arends and Michael David Jackson Arends.  Not knowing that we were going to have a Jackson I wanted Michael to have my Dad’s name in there somewhere but we didn’t want him to be Michael Jackson Arends.  So since we both have brothers named David we added that.  Of course now Michael is a big Michael Jackson fan and wished we wouldn’t have added the David!  Because both boys are Native American, Jackson’s Mom was Native American and both of Michael’s parents were, people kept telling us that the tribes would never let us adopt them.  But they did and we were a family.

Again I would love to tell you “Jack” stories.  He was an incredibly spirited guy that didn’t let his wheelchair get in his way.  He was confident that he could make things work out the way he wanted them to. But that too is another story.  On Friday, September 19, 2014 Jack’s school called because he wasn’t feeling good and he had a low-grade temp.  He had wanted to stay home that morning because he was tired but it was picture day so I encouraged him to go.  During my lunch break at work I picked him up from school and brought him home and I went back to work.  Larry was home and the two of them watched TV.  Jack seemed tired but it was no big deal and nothing seemed too concerning.  Looking back it is interesting to recall that he had also talked about seeing different colored things floating around.  I asked if they were scary and he said no.  That night at 8:00 when he was getting ready for bed he wasn’t running a temp and said that he felt better.  I then checked on him at 10:00 and again at 1:00 and he was sleeping soundly.  I also went in at 7:00am to check on him.  He always slept with his blue pillow on his face and he would pretend to be asleep and then throw his pillow up in the air to scare me.  I talked to him and he didn’t answer so I was waiting for him to try to scare me.  When he didn’t I took his pillow off his face and he didn’t respond and he was cold to the touch.  I called for Larry. He came running in and told me to call 911.  The operator kept telling me to calm down but I couldn’t.  Larry put him on the floor to do CPR- but Jack was gone. Soon all kinds of people started arriving; police, firemen, ambulance people, our pastor, and our kids.  I asked one of the firemen if I could ride in the ambulance with Jack and he said that if they take him to the hospital I could.  I realized then that Jack might not be taken to the hospital.  You know how you can see something but your mind won’t comprehend it?  When they couldn’t save him they called the medical examiner to come.  I lay on the floor next to Jack with my arms around him, talking to him and playing with his curly hair.  At times I would be sure I saw his chest move and that God was doing a miracle, because if this boy didn’t deserve a miracle then who did?   When the medical examiner came we had to leave the room so they could do their investigation.  Finally they said they were done and that we could have a few more moments with him and then they would have to take him.  They put my son in a body bag and loaded him onto a gurney.  The bag was blue.  I told them that blue was Jack’s favorite color.  Then it was time to zip the bag up- I didn’t want to see that.  I asked, “he is really dead?” and was told, “yes”.  I went back into the house.  We never thought we would feel the horrific pain of losing a child again.  Now our hearts felt like they were crumbling away.

***Two months later we found out that Jack died from a rare virus called D-68. In the fall of 2014, twelve kids died from it in the USA.  Two of the kids didn’t have symptoms, Jack was one of them. 

It has been almost three years now.  I have read just about every book on grief there is and still don’t have any answers.  How can I say that God is all powerful, that He will work things together for my good, yet this time He didn’t.  He is always with us and will never leave us, but He let Jack die. How can I cast my cares on Him when He could have stopped Jack’s death and didn’t.  When He, above everyone else, knew how much I loved Jack?  I know that when I get to heaven I will see Jack again and all this won’t matter- blah, blah, blah.  But right now the hurt is so profound I don’t want to think about the future. Not a future without Jack.

I will keep searching.  I have to trust in God because what else is there?  On some level I have to believe that God loves me.  I hate when people list all the positives that happen after something horrible happens. But, truthfully, there have been some positives, just not enough to make losing Jack okay.  We have experienced, and continue to experience, in big and small ways, more love from people then I ever knew was possible.  People understand that a person can laugh and still be devastated.  Our family and friends continue to love and support us while they also grieve for Jeffrey and Jackson.  We share stories about the boys, laugh and cry together.  We go to a church that loves us like Christ does.  Frequently I am unable to sit through a service because it’s too hard to sit with my thoughts, a song breaks me in two or I can’t stop picturing Jack laying there in his casket. So I go hang out in the nursery and rock babies.  They know why I am there.  Our church is a place where we can be honest about doubts, anger, and questions.  I can bleed there.  Larry and I continue to hang in there.  Someone told us that when you lose a child it’s so hard for the parents to comfort each other.  It’s like someone with a broken leg trying to help another person with a broken leg climb a mountain.  But I can’t imagine going through this with anyone else. 

Melissa asked me to tell how my strengths from the Strength Finder have helped me. My strengths are all in the relationship building domain.  I was disappointed when I found this out because they seem like such “girlie” strengths. They certainly won’t change the world, but like Popeye said, “I yam what I yam”.  The other three domains “make things happen”, “take charge and influence”, and “keeps everyone focused”.  My domain is the “glue that holds the team together”.  Whoopee!  Oh well. They are, in order, developer, relator, empathy, harmony, and adaptability.  I honestly don’t know how they have helped, but if Melissa says they have, then they have!  Here is what she said:  “Developers see the smallest of growth and potential, (yep, parenting kiddos that need you so desperately).  Relators love deeply.  Once they allow you in to their hearts you are truly part of their inner circle (or family!).  Empathy – you can’t help but be moved by the kiddos who need love and care!  Harmony – you strive to find balance.  Adaptability – the seasoning that allows you to find joy, peace, laughter in the chaos of being a momma who is also a caregiver!”

Anyway, my prayer for you is that you won’t ever be afraid to love.  The joy outweighs the pain. It is always worth the risk.

Barb has also recently started blogging!




2 thoughts on “Barely Surviving, Trying to Thrive

  1. You are an amazing, kind, caring and generous woman! Your story is incredible and I thank you for sharing it Barb! We are sure blessed to have the Arends family at our church and as our friends! You have me in tears! Love you to pieces! God bless and I pray for you always! Love Shannon Schultz


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