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Our Village

Have you seen the miniature Christmas holiday villages beautifully displayed during the holidays? You may find them in homes or in department store windows. Some families carefully expand their enormous collections of porcelain ones each year to grow their fantastical community. In earlier years, our family had a very small set of ceramic village homes and buildings that we unpacked during the holiday season and proudly gazed upon that scene as our imaginary, perfect town.

Those tiny lit-up villages tucked perfectly into snowy scenes make me mindful, during the holidays, of the people in real-life villages with real-life medical homes. Ours may not be so perfectly planned, but our community that we desperately count on is, unquestionably, a village of beauty. Our lights flicker off and on and may not burn as steadily as the majestic lights of some villages, but I guarantee that our lights never go out. Those lights stay on to welcome new members and to help lead the way in the darkness. Our tiny lights are especially bright at night.

What does your village look like right now? Is your community unified around your needs? I hope there are wonderful family members, friends and professionals who make up your village and that you are celebrating these loved ones well.

Who do you need in your village or medical home when facing medical or care issues? We needed so many kinds of people in ours. Let me tell you about them.

My husband was and is at the top of my list of caregivers. He guided my hands and heart when I didn’t know what the heck I was doing! There is not a person in this world who could have loved me like he did throughout Robert’s life. I needed a strong husband who could stand to see death daily through eternal eyes, but care to the very last minute that life was respected here on earth. Chris never wavered in his commitment to do whatever it took to make our lives possible in our medical home through deployments, sacrifices and lack of attention. He made sure there was a light of love and hope always burning brightly in our home.

Our four other children were our confidants and caregivers, caring for Robert and for us. There were days when I was so exhausted, one of the kids would take a turn spending the night with Robert so I could better rest. There was a day when I watched our daughter breathe life back into Robert’s little body while her two sisters cried and prayed with me over his limp body as we waited for the ambulance to arrive. Many days, his siblings helped me lift his soft body into the wheelchair or the bathing chair, relieving my aching back. There was also a day when my daughter let me admit to her, as we watched Robert seize on the couch, that we were losing him. Our light was dim, but it wasn’t out, yet. It just flickered a little some days.

You will need extended family: parents, siblings, nieces...everybody. My oldest sister and her daughter took time out of their lives to work weekly caring for Robert. They brought to him the pure joy of extended family love, and he reveled in their affection. No amount of thanks will ever be enough to thank them for the years of care and counsel. My parents flew into town often to help us. My dad was so gracious in giving up his time with his wife to allow her to be a mom and a grandma in our home. (It seems so very real to me now that I have a grandson whom I adore!) We were also blessed to have other nieces help out in Robert’s life. It took a village!

We had the best medical teams in and out of the military. Pediatricians of every sub-specialty, including some of the best neurologists in the country right here in Texas, resided in our village. Robert had nurses, therapists, technicians, and support staff that helped us keep his life moving on a manageable schedule. Their buildings always left their lights on for Robert.

The teachers in Robert’s life cared deeply about his education in the school building and later in our home. There was not always clear direction on what he understood or could tolerate, but they never gave up trying every method they knew. His Individual Educational Plan (IEP) was constantly changing, but it adjusted around Robert’s disability, and that was exactly what we all needed. What a blessing they were!

During this holiday season, I can’t help but think of all the neighbors that made Robert smile and made our village a place of joy. We didn’t live on “easy street,” but every one of our people visited us on that street. Our village was overwhelmingly packed with experts and servant-hearted people alike committed to supporting our family. And there are so many more families like ours.

How can we help you in your village? Do you have a need that we can help meet this holiday season? We were not meant to walk our paths alone. Please let us be a part of your village.

We will do our best to reach out to you through our schools, churches and community groups. One dear friend suggested that, during this season, those in the community may ask if they can bring you dinner, pick up Christmas gifts on your behalf, wrap your gifts, or take your other kids ice skating. If or when that occurs, please say “Yes, thank you! That would really help.” She also suggested that inviting family friends to come over to watch a Christmas movie with your family may be a wonderful way to enjoy the holidays together when inclusion is extended in this loving gesture.

As Mr. Fred Rogers said,

“It always helps to have people we love beside us when we have to do difficult things in life.”

Many want to help, but just don’t know how. Be brave enough to ask for what you need. Our light will stay on for you.

Listening Library: It Don’t Have to Change (John Legend)

“Friends love through all kinds of weather, and families stick together in all kinds of trouble.”

(Proverbs 17:17 MSG)

It Don’t Have to Change

Alright, everybody, let's go Here we go Let's do this Oh, do you remember? (Ooh-ooh) When the family was everything? (Ooh-ooh) Oh, do you remember? (Ooh-ooh) It was so long ago and so much has changed (Ooh-ooh)

I wanna go back (Ooh-ooh) Wanna go back to those simple days (Ooh-ooh) I wanna go back (Ooh-ooh) But now we've grown and gone our separate ways (Ooh-ooh)

Times is hard (Times is hard) And things are a-changin' I pray to God that we can remain the same All I'm trying to say is our love don't have to change No, it don't have to change

Do you remember? (Ooh-ooh) Back at Grannie's house on Christmas Day? (Ooh-ooh) Help me sing, do you remember? (Ooh-ooh) How we'd gather 'round and sing all day? (Ooh-ooh)

And I wanna go back (Ooh-ooh) To playing basketball and football games I wanna go back (Ooh-ooh) To yesterday but it's not the same

Times is hard (Times is hard) And things are a-changin' I pray to God that we can remain the same All I'm trying to say is our love don't have to change No, it don't have to change

Times is hard (Times is hard) And things are a-changin' So I pray to God that we can remain the same All I'm trying to say is our love don't have to change No, it don't have to change, yeah, yeah

Songwriters: John Stephens / Dave Tozer

It Don't Have to Change lyrics © BMG Sapphire Songs, John Legend Publishing

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