Life Is Tough; We Need Each Other ~ 2 of 3

He Truly Is for Us ~ Life Is Tough; We Need Each Other by Eileen Million

“O LORD, you have searched me and known me!  You know when I sit down and when I rise up; you discern my thoughts from afar.  You search out my path and my lying down and are acquainted with all my ways.  Even before a word is on my tongue, behold, O LORD, you know it altogether.  You hem me in, behind and before, and lay your hand upon me.  Such knowledge is too wonderful for me; it is high; I cannot attain it.”  (Psalm 139:1-6 ~ ESV) As Christians most of us would emphatically declare that all human life is sacred and born from our God and Creator.  Most of us have at least seen from afar human beings with various degrees of impediments to their bodies and/or minds.  Are the lives of these people as valuable as your life?  How do we judge the value of human life?

I will take a stab at those questions and hope that we all develop keener eyes and hearts to see each other as God sees each of us through the life of significantly impaired children like my son, Simeon Elijah.

As a baby of 6 weeks old Simeon was just as beautiful and tender as any other baby his age. What was outstandingly different upon caring for Simeon was the stiffness of his extremities and the unusual sleep patterns.  Simeon needed a little coaxing to suckle by gently rubbing underneath his chin.  This benign task would give a peek into his long-term dependence on others for sustenance.  I delighted in knowing how to stimulate his sucking reflex.  It did not take long to fall in love with our baby boy. Simeon was joined a mere 4 weeks later by a sweet baby sister.  She would prove to be an important  delight in Simeon’s life.  At 4 months old I saw Simeon’s first smile.  I had my “twins” Simeon and Moriah laying on our bigger bed changing their clothes.  Our happy, sweet Moriah had begun cooing recently and was doing so that afternoon when I saw a most precious sight.  Simeon was smiling, not just an ordinary smile, but what we would describe as a full body smile.  His eyes lit up as he looked in the direction of his sister, his cheeks and his shoulders were raised. Full attention was given to his little sister.  Once we knew Simeon could and would smile it became the object of much joy in our household.  How many times since that day one of us would declare in a loud voice, “Come here, Simeon is smiling.”  That smile was only surpassed by his laugh that appeared while his big brother Randy was playing “tough boy” with him about 5 years later.  We then would take turns calling out to each other when we were a party to Simeon’s laughing.  To this day nothing touches my heart quite like a Simeon smile.  I long to hear his laugh, but since he had a tracheotomy in October 2009 his laugh appears to be something in the past. We all hope the increased silence since the tracheotomy will break forth one of these days with familiar giggles, sighs and exclamations from Simeon.

Our darling boy is our baby.  His needs are very much the same as they were in the first few months of his life.  He still possesses some reflexes common to an infant. Simeon’s body is that of an 11 year old boy, but in the majority of ways his innocence and sweetness of a 6-week-old baby remains.  The desire to pick him up in my arms with the ease I once did is great.  Simeon loves to be rocked, held, talked to, touched, sung to and talked to in my squeaky “talking to a baby” voice.  If only, I have said so many times.  If only Simeon would have stayed the size of an infant.  We could all meet his needs much easier and bring more joy to him daily.  Another benefit of such a situation, could it exist, would be the way the world viewed him both from inside the church and outside the church.  A sad fact for this Momma is the disparity between what Randy and I and our other children, Krysann, Kara, Randy Jr., Gabriella, Moriah and Jeremiah see when we look at our son and brother and what others see when looking at Simeon.  The majority of us have clearly seen the smiles of adoration upon looking at a two month old turn to some of the ugliest looks I have ever seen in my entire life. I trust our Lord Jesus with life and that includes every aspect of Simeon’s life, even the ugly reflections I can get back when some pass by our son.  Since I cannot change others, I pray the Lord continues to change me and teach me all he can through the life of our son.

Simeon’s capabilities to learn may be thwarted, but this little man has been given an honorary doctorate in our household for what he can and does teach us.  Some of these lessons include contentment in all circumstances, full unbridled trust, joy, patience, cherishing life and most importantly seeing our sin nature abound.  All these lessons are ongoing and many are repeated from time to time.

Simeon’s brothers and sisters each have their own special way of bonding with Simeon. Somewhere throughout the day Simeon is greeted by Randy Jr. He usually spends a decent amount of time talking to him and kissing his cheeks (something about those cheeks that are kissable).  Jeremiah and Moriah always want to find their way into Simeon’s room to play with him. Simeon’s eyes glow as he hears their voices.  Jeremiah requests to join Simeon in his bed as Moriah stands at their side.  Every stuffed animal Simeon has ever gotten is put to full use often as they go on many adventures with these three children.  Simeon’s sisters Krysann and Gabriella check in with Simeon, they hangout and greet him daily.  Kara who is away now at UAH visits every Sunday at church and at home for Sunday dinner. Somewhere in that time Kara makes her way to Simeon, and talks with him.  Each of them truly love Simeon.  Yes, Simeon is different, but the desire to protect him and guard his integrity, dignity and worth overwhelms each of them.

Because Simeon’s body has grown and immobility remains, we bear witness to a body that is being stressed and taking on a form of its own.  As we learn to stand and walk our bodies develop way beyond leg muscles.  Our lungs, spine and ribcage take form and strength.  Here we see the most decline in Simeon’s well-being and life: Scoliosis giving way to restrictive lung disease.  The majority of people with severe Cerebral Palsy that succumb to it do so from respiratory ailments.  Early on in Simeon’s life this fact would be known to us, but stored away for some other day.

That other day came crashing upon us in September 2009.  A nasty virus had visited our household.  We tried all we could do to keep Simeon away from this bug. In a matter of a week he also would get sick from this severe upper respiratory bug, most likely H1N1.  It didn’t take long for us to see we were going to need more supportive care for Simeon.  We sought help from our local hospital and their PICU. We were advised that the H1N1 virus did its worse damage to folks who had underlying medical issues and were in a weakened state. Often, death became imminent. Simeon fit that category and we knew how serious his condition was.  As I stayed close by Simeon’s bedside I began to be encouraged after a couple of days of BiPAP.  What was not encouraging was coming face to face with an evil employee. Someone charged with caring for my son showed me how much disregard they had for Simeon.  I quickly confronted them and their story immediately changed.  I treated this person and this situation the way I would want to be treated.  I prayed and kept quiet hoping this person could not sleep well and would apologize for such a cruel act.  When there was no contrition forthcoming I approached the supervisor, then the administrator.  This employee lied and continued to lie.  The hospital had no choice but to believe their employee, or did they?  Besides my son being gravely ill I was forced to entrust his care into the hands of the same people who would let this unapologetic employee continue in their role.  The only control I could exact was to never allow this person to come in direct contact with my son again.

Back at home our children and Randy were angry and very disturbed by the happenings occurring at the hospital.  They realized the only thing they could do beyond supporting me in my efforts was to pray knowing, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” (Romans 8:28 ~ ESV)  Brothers and Sisters in Christ, others on our prayer list and our church family were also praying for this concern as well as for Simeon and our family.

Our Lord was gracious and merciful.  Health was being restored to Simeon in spite of the circumstances that plagued him.  A tracheotomy was performed with our consent so that any future respiratory illness could be dealt with more easily and ventilation would be better controlled.  It never occurred to me that I may never hear him laugh again.  What I did think of was, a similar illness would not require BiPAP via a mask.  That device was beneficial, but torture at the same time.  About 3 weeks after admission Simeon was discharged with a huge caution.  The H1N1 virus, if it made its way to the lungs, could result in permanent damage to the lung tissue and also a slow recovery and healing of those tissues destined to be healed as well.  Simeon went home on oxygen for the first time.

Our delight was interrupted when after 10 days home we had to seek respiratory support at the hospital again.  This time things moved fast. Higher oxygen concentrations worked for awhile, then CPAP was needed. CPAP worked for awhile, then the ventilator was needed. Several hours later the mechanical ventilator would no longer be adequate to meet his needs. In quick progression a central line with several ports was put into Simeon’s groin followed by the addition of a machine I had not heard of before.  This was called an oscillator or also known as the machine of last rescue.  In order for the machine to work, it required paralyzing and sedating the patient.  I stayed awake all night long reading everything I could about this machine and asking questions to the respiratory therapist on duty as well as having bouts of grief and weeping like I have never known.  As dawn was breaking Simeon’s blood gases were again showing respiratory distress.  Absolutely exhausted I fell asleep for a couple of hours as the day shift was taking over Simeon’s care.  It appeared that this would be the day that our Lord would call our son home.  After my nap and shower I was able to have a long overdue heart to heart conversation with Simeon’s nurse.  Since addressing a concern with a nurse during our previous stay as well as going to supervisors and administration about another individual there, much anger was being sent my way during this hospitalization.  This was a very lonely, sad place for me.  Even my sweet Simeon could not respond to my love and touch since sedation.  Aside from our Lord Jesus, I was indeed alone in this battle for most of the minutes of the past 2 days.  Randy would visit every evening and we would talk as often as needed by phone.  This morning I gave him the saddest report ever. As soon as he could he would make his way to the hospital.  The oscillator had proved to be temperamental all night long.  Any touch to Simeon made the machine’s alarms go off and the assigned respiratory therapist and nurse running to the room.  No, I could not even touch my dying son. Would Randy and I decide to stop the oscillator, so we could at least hold our precious son as he left our arms to go into God’s arms?

As the nurse and I discussed many issues while at Simeon’s bedside, I prayed quietly and asked the Lord if He could give us all another chance to care for Simeon and each other, God’s way. Lord willing, an exemplary display of true team work could happen, only by the grace of God. By the end of our conversation it was time to repeat the blood gases that would reflect how Simeon’s lungs were working. This time I was startled to hear the blood gases had improved. Randy and Randy Jr. arrived a short time later and by then a bit of hope for Simeon’s life had replaced that truly terrible place of grief I had known earlier that day.

What was overwhelming to me was how raw I felt to the anticipated loss of Simeon. All these years of knowledge of what may come did not do a thing to prepare me for such agony. I wasn’t alone with these feelings. Each member of our family besides praying were weeping and grieving the potential loss of Simeon.  Trying to picture life without Simeon was different for each of us.  The bottom line was, he means so much to each of us and the loss of him would leave an incredible hole in our lives.

I was accused of not letting the nursing staff do more of Simeon’s care. They were right, I had my way of caring for Simeon, and I really love taking care of him.  Simeon as well responds to my ways positively.  When Simeon was sick I was never sure how many more opportunities I would have to wash him up, put lotion on his body or put on his “must have” socks.  Yes, I was zealous to do everything I could for Simeon, myself. Now I found myself restricted from even touching him because of the oscillator. Could all these years of loving Simeon end so cruelly?  Why would this staff seek to punish me for daring to protect and care for our child? Surely they did not understand my love. The lack of support for me as my child was dying was glaring.  Maybe they thought because Simeon was disabled I would be less grieved?  Maybe because Simeon was adopted it would not hurt so much to let him go. Maybe they thought I would be relieved that I would not have to take care of him anymore.  If any of these were their thoughts they were most definitely wrong.  I could be at peace with God’s will and yet grieve intensely. It did not have to be one or the other.  Jesus wept and so did I. The thought that we may have to share a most intimate part of our life, the death of our son and brother with onlookers who lacked the ability or insight for compassion was another sock to our gut. Was there anyway we could get Simeon home to die was a question I asked and discussed with his doctor.

Slowly over the next two weeks Simeon began to recover from this respiratory attack and got weaned from the oscillator.  He progressed rapidly to finally being on a little bit of oxygen as he was before.  I stand amazed with the mercy of God as well as the technical skill of the PICU staff.  Although I would never be the same, Simeon came back to his baseline and his smiles were abundant, as if he was making up for lost time. The last two weeks also proved to be an answer to my prayer as I conversed with the nurse as Simeon was at the most critical point. Attitudes changed and there was more peace these last weeks.  As we were being discharged the nurse escorted us out to our vehicle. We exchanged several things, but after my comment about, was Simeon’s disability contributing to the apathy we experienced, she responded that it may be time to have an in-service about that issue.  She relayed that when she was working in the ER that a child like Simeon was brought in and died.  The parents were grieving and crying immensely.  The staff remarked amongst themselves, “why are they carrying on like that, it is not as if they didn’t know their child was going to die.” Her response to them was in part correct, she said “Well, they didn’t know that he/she was going to die today.”  She was indeed right, it was about time she had an inservice about this subject with the staff. I hope she did.

Life at home was different without Mom and Simeon home.  Our church family helped out abundantly by keeping our children involved and getting them to work, music lessons, Kgroup.  Randy kept the home and schooling going as well as visiting Simeon and I each evening or more if needed. Meals also were being provided by our church family.  What a blessing that was for our family.

I had been given a glimpse of  Jesus through my brothers and sisters in Christ and sadly a glimpse of sin being perpetrated on my innocent son.  Was my church family going to tire of Simeon being ill as well?  Could they have similar thoughts about our grief and needs as I wondered about the hospital staff?  Do they have a God-oriented view of Simeon or do they have a worldly view?  What could I do to let others know just some of what God has taught us through Simeon, especially most recently?  What could I do to challenge others to reject the world’s notion of children like Simeon “being a vegetable,” unworthy of medical care and maybe even deserving withdrawal of sustenance from them?  Simeon is the same little fella he was before getting sick in September with the exception of the silence.  He is happy and content being who God made him.  He may look indifferent or withdrawn in public, but he seems to get overwhelmed and his way to deal with it is to close his eyes and and go to sleep or look away.

At home amongst familiar faces and voices Simeon can be Simeon and most days we find him quite content.  We love Simeon just the way God has made him.  He has a mighty purpose as does all those the Lord has formed in the womb.  Can you see past the disabilities?  Do you value him or others like him?  Are you a respecter of persons, giving certain people more value and respect than others?  I challenge each of us to pay attention to this part of ourselves.  Consider new ways you can respond to children and family members of disabled people.  Ask me or others similarly situated what should you do or say that will encourage or support us.  Parents, when your young children point and ask about our son in public, politely come and ask us why our son is in a wheelchair. Often young children want to know how a child can become so sick as to need a wheelchair. My reply to them is: “his head got hurt when he was just a baby, so now he can’t do all the things you can do. But he is happy.” Often they may even initiate wanting to touch Simeon’s hand which is always welcomed. Then the contented child is on their way. A friendly smile our way is always appreciated when out in public passing us by.  At times Simeon gets the attention of someone asking if they can come into his space and touch him. Often it will turn out to be a parent, sibling, cousin, neighbor, or teacher of a current or past special needs child.  Sometimes it may just be a prompting from our Lord. Maybe I just had an ugly look by someone, and I need the encouragement that would come from a tender smile my way.

When and if the day comes that I or another parent has to bury their child, please be there for them in the days following their death as well as the years following.  One thing I did learn is there is no way I can prepare for my child’s death. Consider this: how do you prepare to stop loving someone? How do you prepare to not take care of someone who you take care of?  How do you prepare for not seeing their smile or touching the warmth of their body?   If that day comes I may be feeling stoic, or I may be weeping nonstop.  I don’t know what will lie ahead for us.  I do know if death visits us, I will need Almighty God and my brothers and sisters in Christ to be there for our family.

God would have it that two of my dearest friends would have to bury their children.  Their lives certainly have been complicated by the death of their sons. People inside and outside the Church have hurt them even more than they were hurt by their thoughtless words and actions.  We all will grieve differently. There is no time table for when the tears will stop flowing.  Hugs and phone calls on their child’s birthday or anniversary of their death bring comfort to their hurting hearts.  Twenty-three years after my dear friend’s son, Justin died, the grief is still there.  Phone calls and discussions of her darling little boy still bring joy to her.  Likewise for my other dear friend.  Two of her sons have gone before her and it also brings her comfort to talk about her sweet, loving Jesse who died ten years ago and her precious baby, Elijah who died nine years ago.

Life is tough and we do need each other.  “Therefore encourage one another and build one another up, just as you are doing.” (I Thessalonians 5:11 ~ ESV)  “A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.” (John 13:34 ~ ESV)

Epilogue

Our son Simeon moved on to glory Dec. 31, 2011.  It has been a harsh adjustment for many of us here and unfortunately it is not a neat and tidy process.  We each trust our Lord and rejoice that Simeon is in the presence of our Father forever.

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