Tuesday, May 23, 2017

Sick But Not Hospital-Sick

You keep track of all my sorrows. You have collected my tears in your bottle. You have recorded each one in your book. 
Psalm 34:8, NLT

Last week Liam had the worst cold that he has had this winter. Although we haven’t needed supplemental oxygen or hospitalization for his colds for the past 6 winters, illnesses for Liam stop our entire family life. When he is unwell, our every effort revolves around his care. Last week my husband and I took turns all night on the couch with Liam sleep-sitting on our laps so that he could breathe and sleep. Parents of typically developing kids complain about this with a toddler and doing it with a tall 9-year-old is even more difficult! (I can't help but wonder how we will do this when he is 16!)

Our girls know that any expectations that they have of us - driving places, appointments, dinner - go out the window if Liam is sick. Our family goes into a survival mode and only the most necessary things get done. These girls who can often be loud, demanding, and lack a helpful attitude begin whispering, taking care of each other, and doing chores without being asked. They know that it takes every ounce of our energy to tend to a sick Liam. 

I realized the extreme difference between an illness for Liam and one for the girls when I was on the phone with our nurse. We were talking about his oxygen saturations and heart rate and trying to parse out what symptoms are allergy related and which are cold related.  She asked if the rest of us have a cold and what our symptoms are. I was stumped.  I had no idea if the girls had colds or not. When I asked them, I found that they did have colds, but since they are generally healthy kids, they just blew their noses a bit and went on with life.  As their mom, I didn’t even know that my 12 and 5-year-old had the same cold as Liam!  Even when my girls have illnesses that knock them flat, it is typically a few days in bed with lots of TV and fluids. Mothering them through sickness is a completely different thing than the overwhelming feeling of even minor illness for Liam. The combinations of low muscle tone, poor swallow timing, protective airway behaviors, and being non-verbal make every illness so difficult.

Sometimes I find myself missing the days when Liam was hospitalized for every cold. I don’t miss the home oxygen or the deep suctioning or the fear that he wouldn’t make it through each cold. What I miss is that our friends and relatives recognized how hard it was for our family. Knowing that we were in the hospital, they recognized the emergent nature of the illness and all of the management that went into being at the hospital and keeping our home running. I guess a part of me liked that others recognized our stressful situation. After winter upon winter of Liam managing without hospitalizations, it feels like no realizes how quickly he can become very ill and how intensely difficult his care can become.

I'm not sure why I want others to recognize the consuming nature of Liam's daily care in my life. I care for every need of Liam's. I manage his care and school teams. I make sure he is fed, hydrated, clean, and appropriately engaged in activities. The harsh reality is that without me, he would die. He is almost 10 years old and cannot even hydrate himself. He depends on me for every single need. Each day he gets bigger and heavier and I must continue to care for him. It feels isolating to do something hard every day for many years and feel like no one even realizes how hard it is. Sometimes the desire to have others understand or empathize with the overwhelming feelings of parenting a medically complex, non-verbal child and the heartache of the isolation that I feel burns so fiercely within me. I want others to spend one day fiercely loving someone whose needs are so great. Just one day.

The reality is that the recognition and empathy of others aren't as important as I sometimes let myself think they are. God knows the hard work that we do each day. He sees our loving care for our children, our exhaustion, and our isolation. He knows the things that overwhelm us. He cried with Mary when her brother Lazarus was dead and he is with us when we are up to our eyeballs in caring for our loved ones. Psalm 34:8 says, “You keep track of all my sorrows. You have collected my tears in your bottle. You have recorded each one in your book.” So as I am feeling like there is no one who understands, there is. Our God whose own beloved son died for sinners understand. He cares. He knows my every sorrow. He cares so much that he has collected my every tear in his bottle. He has recorded my sorrows in his book. I am not alone in this hard job of parenting. You aren’t either. May we rest in the God who values us so much that he collects our tears in his bottle.

Pray:  Dear Heavenly Father, collector of my tears,
Thank you for loving me so much and for caring about my earthly sorrows and difficulties.  Please give me strength to face each day and confidence, knowing that you are a God who treasures me and holds me through every sorrow. Help me to feel your presence. Amen.

Wendy Heyn


  1. Sorrows come in many forms. Your reminder of Psalm 34:8 is quite timely for me. The description of your son and the fierce love you pour out for him is familiar to me. My son has similar conditions to yours. He will soon be 24. I remember the feeling of being alone, especially in the earlier years. On one hand I wished that people understood the extremes of effort, emotion, and heart pain. On the other, I am glad they don't. To truly understand, their child would have to be sick or injured. My sister pointed this out to me after she experienced a full term still birth. The pain of loss was excruciating. She had no one in her circle of friends, including her sisters, who understood the constant ache. She said to me, "The only way someone could understand is if they would have to be standing in my shoes, and I wouldn't wish this on anyone." We have both found through the years, and several other horrible situations with our kids, the same thing you have expressed here. He knows our every sorrow and we are not alone. Thank you for your post.

    1. Mary Anne, I am so glad that you commented. When Liam was small, I couldn't imagine nearly 10 years down the road...yet here I am. It is such a blessing to hear from a mom who is further along in a similar journey and still able to find joy and see that our God is along every step of the way. I am so very sorry for your sister's loss. Many blessings to you and your sister.

  2. I am glad that I am not the only forgotten one. Sometimes I feel guilty when others expect more time commitments from me because they think I am available since my daughter is not in the hospital. They don't understand the rigors of the day-to-day care regimen. I'm ALWAYS trying to explain the situation and it's exhausting.