From Where I Stand

I remember the day my precious friend and In Our Arms blogger, Juli Henderson, called me in early 1996 to share some big news.

“You might want to sit down for this,” she stammered teasingly. I did what I was told.

“We’re having twins!” she exclaimed.

Of course, I was thrilled and excitedly replied, “Wow! You’ve always told me you wanted four children, and now you’re getting an extra one! Thank you, Lord.”

I didn’t know until this year that she really had hoped for 10!

Juli and I were acquaintances in college but had become good friends since crossing paths in 1990, five years after I graduated. She and her husband, Chris, performed in a reunion concert in Dallas with the music ministry group they had traveled with during their college years, and I attended, hoping to reconnect with Juli. Less than three weeks later, I was dining at the Hendersons’ table in San Antonio at their invitation and falling in love with their daughters, four-year-old Jessica and two-year-old Eliotte. The rest is friendship history.

In addition to my many trips to San Antonio and some of theirs to Dallas to be together, I have traveled to Minnesota and Maryland to visit this family during Chris’ medical fellowships; to Kansas as (now-28-year-old) James’ nanny with Juli so she could sing at a crusade; and with the entire family to Massachusetts for Jessica’s college graduation. I know this family. I love this family. I have spent considerable time with this family.

Over these 30+ years of fierce friendship, I have gained far more than I have given — and I have learned much — observing from where I stand.

What have I learned? Here are a few things.

I have learned that children with special needs are still, first and foremost, children. More than anything else I learned from Juli’s son, Robert, I learned that he was more like a typical kid, than not. His stubbornness in wanting his own way, comedic timing, teasing, desire to play and participate as well as his spontaneous affection was just like those of other kids in my life who did not suffer with physical or intellectual challenges. So, when I bought his four siblings matching Old Navy tees for our Fourth of July celebration, I also bought Robert one. If we watched a movie Victoria selected, we watched an episode of SpongeBob SquarePants for her twin afterwards. He may not have tried to wake me by kicking a ball outside my guest room like James and Victoria did when they were little, but Robert had his own way of getting my attention, and I loved it.

Every time I said “goodbye” to him and reached to hug him after an extended stay in his home, he would grip me in what I called a “headlock hug” that I could not escape from until the time only he deemed appropriate. Consequently, departing prayers for me and my traveling safety by his parents, as was and still is our custom, were typically uttered over me during the headlock. To this day, I terribly miss those long, warm, tight headlock hugs from Robert that made it a little easier to leave my friends.

I have learned that siblings in the homes of special needs kids or adults need to be lavished with extra love by friends, friends’ families, and other family members in addition to their parents. We must be intentional to engage them, listen to them, show interest in them, and invest in them; their day-to-day normal is probably different from their friends’ normal. Even if there is a paid caregiver helping in the home, Mom and Dad already have their hands full, though they try to be as attentive as possible to all their kids. Mom or Dad may not be able to attend each basketball game, concert, or competition their other children participate in, if any. But you can attend some events as an extension of their community and add your cheering voice of encouragement to the throng of fans in the crowd. What a gift that would be!

Though the hardships of their sibling’s condition usually build great compassion in these kids, every discussion does not need to center around what is going on with their fragile brother or sister. Their world is bigger than that — or should be. However, there may be a hospital bed in the middle of their living room which makes a teenager uncomfortable to invite friends over … so you invite them to your house to hang out with your teenagers. Be creative. Be resourceful. Be hospitable.

I have learned that it’s important to be a person who is safe to be sad with. Caregiving can change a person because of the demands placed on them; the stream of nurses, therapists and regimens they must work with and around in their home; and the constant awareness of what may lie ahead to the point that one may not recognize their life. That’s sad. Loss of any kind is sad — hopes, dreams, finances, freedom, privacy, relationships — you name it. Is it safe to be sad with you?

Even if the time comes that the caregiving course is over, there may be multiple anniversaries that evoke sadness again. It’s not really over! The grief is still there and will be there for a long time. Be sensitive to this reality. Be willing to sit silently with a friend in their sadness — to acknowledge the loss and hurt, not to eliminate it. The power of your presence alone can be healing.

I have also learned that caregivers know best what they need. As Robert grew bigger and his condition grew worse, Juli still insisted on taking me shopping or out to lunch when I came for a visit just as she had when she only had two able-bodied preschool daughters in a double stroller and no voice students coming over for lessons. I usually tried to talk her out of these jaunts because I knew it would be hard for her to manage Robert and his wheelchair, especially if we had all five of her kids in tow. I didn’t care what we did as long as we were together. I wanted to make things easier for her so, most times, I tried to change her mind. I was wrong to do that. I was not walking in her shoes, so I was in no place to question her choices. Only recently have I realized that, while Juli wanted to entertain me, she needed to get out of the house, and doing that with a friend like me made things easier for her. Fortunately, she always won this argument during my visits.

Let your caregiving friends and family know that you care, but don’t press. (Don’t be like me!) They know what they need. Only occasionally do we come across those who think they must handle everything on their own, which is a fast track to burnout and exhaustion. The caregivers in your life just need to know it’s okay to ask you for assistance sometimes. Be flexible and show yourself as available by sending them a text or calling every now and then. Everyone needs a listening ear and to feel seen, especially during their most challenging days.

Ask them exactly how you can help and be a good friend during this season, but if they have no suggestions, offer to help in specific ways: bring a meal; run an errand; or take their other kids to a movie, for example. Don’t make them create a list for you when they are already stretched. If your friends accept your gesture, follow through dependably. Finally, let your friends reciprocate if they offer. They may only have time to pray for your current burden, but they want to return your kindness if they can.

Perhaps, like me, you do not have a friend or family member with special needs in your care, but you love and cherish friends or family members who do. Please don’t rob your friends, family or yourself of these important lessons in love, service, compassion and empathy. We need each other.

From where I stand, EVERYONE benefits when you share. Share your time, your presence, your encouragement, your touch, your resources, and your prayers.

I am thankful for all the time I have spent with the Henderson family through the years, but particularly for those I walked with them during Robert’s illness. Doing so was a daunting privilege. He blessed me, and sharing his family’s care journey, though mostly from a few hours away, revealed God’s grace to me in new and powerful ways through deep friendship, sorrow and joy.

I am humbled. I am grateful.

“Thank you, Lord!”

Listening Library: Praise You In This Storm (Casting Crowns)

https://youtu.be/0YUGwUgBvTU

“But I trust in you, LORD; I say, ‘You are my God.’ My times are in your hands; … ” (Psalm 31:14-15 NIV)

Praise You In This Storm

I was sure by now God, You would have reached down And wiped our tears away

Stepped in and saved the day And once again I say, "A-men" and it's still rainin'

But as the thunder rolls I barely hear Your whisper through the rain "I'm with you" And as Your mercy falls I'll raise my hands and praise the God who gives And takes away

And I'll praise You in this storm And I will lift my hands For You are who You are No matter where I am And every tear I've cried You hold in Your hand You never left my side And though my heart is torn I will praise You in this storm

I remember when I stumbled in the wind You heard my cry, You raised me up again But my strength is almost gone How can I carry on If I can't find You?

But as the thunder rolls I barely hear Your whisper through the rain "I'm with you" And as Your mercy falls I'll raise my hands and praise the God who gives And takes away

And I'll praise You in this storm And I will lift my hands For You are who You are No matter where I am And every tear I've cried You hold in Your hand You never left my side And though my heart is torn I will praise You in this storm

I lift my eyes unto the hills Where does my help come from? My help comes from the Lord The maker of heaven and earth I lift my eyes unto the hills Where does my help come from? My help comes from the Lord The maker of heaven and earth (I lift my eyes unto the hills) (Where does my help come from?)

And I'll praise You in this storm And I will lift my hands For You are who You are No matter where I am Every tear I've cried You hold in Your hand You never left my side Though my heart is torn

I will praise You in this storm

And though my heart is torn (Though my heart is torn) I'll praise You in this storm (Praise You in this storm)

Songwriters: Bernie Herms / John Mark Mark Hall

Praise You In This Storm lyrics © Sony/atv Tree Publishing, Banahama Tunes, My Refuge Music, Word Music, Llc