So much has changed in the past two weeks since my last post. I don’t know if any of us (those without medical degrees at least) anticipated the intensity and length of this “social distancing” for the coronavirus.

I will admit: much of my last post came out of some angry places in my heart. I know many medically complex families have felt some of the same anger and frustration. After my post, I had a really hard week adjusting to the constantly changing information and guidelines regarding the coronavirus all while watching some of the people I know and love treat this virus like a joke or complain about the minor inconveniences this was causing them. And I think the heart of it is this: while the rest of the world seems to have each other in this time of “quarantine,” we (medically complex families) have never felt more unseen and alone.

Let me explain. My tiny family is currently on day 196 of isolation for the 2019-2020 cold/flu season. We are looking at heavy isolation continuing at least into June with even stricter guidelines than we’ve had before (ie. all clinic appointments being cancelled, losing home health nursing because of exposure risk, postponing lab work, etc.) Before that, we were in isolation for the first full year of Evan’s life. We have only really had a couple months of “freedom” in the past two years.

Most of America is on day 11. And I get it, it is HARD. But as I was talking with a dear friend the other day, I realized why I was frustrated more than anything: I felt like people’s actions were saying that my son’s life was worth less than their weekend plans, a 5K, a vacation, a night out, etc. I miss those things too sometimes. I miss the ability to run out to the grocery store or coffee shop without weighing the costs/benefits. I miss spontaneous road trips. I miss evenings with my friends. Heck, I even miss working sometimes. But I have something worth missing those things: Evan.

My favorite dancing partner.

Perspective.

That is what we all need during these uncertain times. And I am not talking about the “oh well, someone has it worse than me, so…” kind of perspective. I am talking about understanding our WHY. If we have a tight grasp on WHY we have to miss the things we love or have looked forward to, it is so much easier.

We are all in some form of isolation right now. So what is your why? More accurately, WHO is your why? Put a face, a name, a voice to what you are experiencing. If you don’t know someone personally (which I am pretty sure we all do), feel free to borrow my Evan.

joy.

The bigger picture is so critical to our approach to this season. John 15:13 says, “Greater love has no one than this, that he lay down his life for his friends” (NIV). Our sacrifices during this time are a picture of the gospel. We are laying our wants, our comforts, our routines aside for others’ safety.

We got dressed up and had ourselves a gala the other week!

Some friends have asked me to post about practical ways to love medically complex, special needs, or other vulnerable families during this season of coronavirus isolation. Here is a (not at all comprehensive) list of ways to serve and love these families well. *I would like to note that I came up with the majority of this list based on what people have already done for us in the past two weeks. We are so grateful for our community.

BE KIND.

  1. Choose your words carefully. Don’t tip-toe around these friends, but keep in mind that you are likely only experiencing a small taste of that their daily lives look like regardless of the coronavirus.
  2. Offer encouragement. Going along with the point above, share words of encouragement with these friends. Let them know that you are thinking of them and understand that this season is hard and scary. A friend recently reached out to me saying, “I know what we are doing is nothing compared to what you guys do all the time, but now I know how hard it can be. I have been thinking about you a lot.”
  3. Pray for them. I can almost guarantee that every medical mama I know is on her knees daily praying this virus will not reach her child. Join her. Pray with her. Pray for peace for her heart.
  4. Offer to run errands. So many people have offered to do this for us, and it has been such a gift. Evan needed a prescription last week, and a friend went and picked it up along with a few grocery items for us without hesitation.
  5. Bring them a meal. Some days medical-mommin’ is just too exhausting to even consider cooking dinner. Offer to bring dinner by one night (extra points if its take-out from a local small business!) If that’s too hard or too much for you, coffee also works. We always need coffee.
  6. Show up. Obviously, not at their houses. Be there for them digitally or through snail mail! These families likely rely on social media to connect already. Be there for them in this way. Ask how things are going. Ask what’s been hardest. Ask about the monotony of their days. Just be there and be a friend. It is so important. The other night I watched Frozen II on Zoom with five of my friends. It was ridiculous and awesome. I am in several Marco Polo conversations with friends. I use Instagram to connect with other mamas I haven’t even met face to face and probably never will, but they are some of the people I treasure most!
  7. Offer financial help if it’s needed. Many families of special needs or medically complex children are single income homes out of necessity. Evan, for instance, requires 24/7 attention and care that cannot be adequately done without one of us or a skilled and licensed nurse. I chose to stay home before we knew this, but now it is a necessity. We are okay financially, but many other families like us aren’t. Do what you can if you can. Some families may have been able to be dual income but now find themselves out of the job because the risk of bringing COVID-19 home to their child isn’t worth the paycheck.
  8. Stay home. Maybe I should have hash-tagged that. Second to prayer, this is the most important thing you can do for these families. When you say no to the get together with friends, the trip, the play date, the unnecessary grocery/Target run, you are protecting these vulnerable families. You are loving them well by staying where you are.

Like I said, it is not a comprehensive list. My medically complex friends out there, feel free to add your thoughts!

Stay safe, and remember: this will pass, and we will all get through it. Together.


Tags

coronavirus, covid-19, faith, feeding tube, helmet baby, hypotonia, isolation, jesus, medical mama, medically complex, NICU, oxygen dependent, parent, PARENTING, preemie, preemieparent, social distancing, special needs, special needs mom, stay home, tubie


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