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When Social Distancing is Normal

~ Mandy Hawks ~ Leave a comment

Lately my Facebook feed has been filled with people discussing the social distancing measures in place because of COVID19. I have seen several discussions about what people miss the most about life outside their homes or what they will do when they are finally able to come out of the government imposed quarantines and everything can “go back to normal.”

For those of us with medically complex children, this is our normal.

This is what life looks like when you are trying to keep your child alive.

For the past 3 years, since we brought Naomi home from the hospital, we have been living under a certain level of quarantine. We don’t do a lot outside of the comfort of our house and backyard. The girls don’t do playdates or outings and the only real friends they have are each other. We health screen everyone who comes to visit us and we rarely accept invitations even to family functions without making sure no one who is going to be there has been sick recently. I have even lost friends and connections due to the choices that we have to make and the way we have approached this crisis. Each September or October we start to tighten the quarantine. Exactly when it happens is based on what the data is saying on the CDC’s Weekly US Influenza Surveillance Report which I have bookmarked in my internet browser and monitor weekly starting the first week of September. Once the flu hits the “Local Activity” level in the state of Nebraska, we start limiting our activity to essential things only.

My husband and I go to separate church services so the other can stay with the girls.
We stop going to parks and playgrounds.
We stop going on family outings to the zoo.

My kids have never seen the inside of a grocery store or a Target for more than a minute on a very rare occasion because there was no other choice. During the spring and summer I usually do the grocery shopping once every two weeks, by myself, armed with a travel sized can of lysol and a container of hand sanitizer. I go to the same couple of stores with an itemized list so that I can go in and out as quickly as possible. During the fall and winter I use pick up and delivery services so that I don’t have to go into the store.

On a good day my hands feel like sandpaper. Most often they are so dry and cracked from constant washing that they are bleeding. It feels like I have a thousand little paper cuts on my hands whenever I have to use hand sanitizer because there isn’t a sink around.

Living this way, especially now when everyone is anxious to get “back to normal” is one of the more difficult things we have had to do. But it’s all worth it knowing that our daughter is safe and that she is being given her best chance at surviving and overcoming the odds that seem to consistently stacked against her and us.

COVID19 may not have changed anything in our day to day but it did rob us of progress. Many of you know that we were scheduled to undergo surgery to place tissue expanders in Naomi’s abdominal cavity to create space for her organs to fit. It was to be the first of at least 4 surgeries to occur over the next several years. That first surgery has now been postponed until the immediate danger of the COVID19 virus is over. But long after everyone else goes “back to normal” we will continue to keep social distance, wash our hands constantly, shop only when necessary and avoid sick people.

Over the past few years I have often prayed as Jesus did in the Garden, “Father, if you are willing, remove this cup from me. Nevertheless, not my will but yours be done.” I don’t understand or like what is happening right now but I fully trust in the God who does because he is walking right beside us as we navigate the lives we are blessed to live, wether they are troubled or carefree and he also knows the big picture, he’s seen the end of the story. “It is he who made the earth by his power, who established the world by his wisdom, and by his understanding stretched out the heavens. (Jer 10:12-13)”

A Psalm of Lament

~ Mandy Hawks ~ Leave a comment

Lord, hear my cries of despair
My soul is in anguish, my heart overwhelmed.
All day and all night I cry out to you
Lord please hear my prayer and deliver your people.

How long will this suffering last?
My anxious thoughts are relentless and unceasing.
Fear and sorrow constantly pound at my heart’s door,
We are exhausted and our efforts seem futile–
But you oh God, you are merciful and gracious.
You are the Great Physician, the one who formed each of us and knew us before you placed us in our mother’s wombs.
And you love us, you know our cries and you come to our aid.

Lord pour out your healing on this world.
Deliver us from fear and anger and selfishness.
Restore our health and our joy and our light.
I know that you are good even when our circumstances are not.
Turn our hearts and minds towards you Lord.
The suffering of the world is too much for us to bear.
We have been brought to our knees, alone and scared.
Broken and grieving.
Have you forsaken us?

Finding Joy in the Midst of Uncertainty

~ Mandy Hawks ~ 2 Comments

Can I just brag on God for a minute guys?

About a month ago I got a text from my husband saying that he would be home early because he had just lost his job. At the beginning of the week. In the middle of a pay period. Which meant his check was going to be half of what it normally would be and we had all of our big bills due and not enough money to cover everything AND keep us fed.

But God.

In His perfect timing we got a severance check right when we needed it and it helped give us a cushion to pay all our bills and be able to feed our kids and have a little leftover to pay the bills the next month. Vince was out of work for a total of 10 days before he found new employment. It isn’t the most perfect fit as he has no benefits or paid time off, but luckily during the summer there aren’t a lot of holidays. (Doesn’t God have the best timing?) and it seems to be where God needs him for now. We are still praying for a better opportunity but are grateful for what we have and are open to what God has for us to learn or do, which largely seems to be learning to rely on Him for everything.

Lately we have had several opportunities to hear God ask, “Do you trust me?” One such case of this is regarding the amount that we tithe to our church. Vince has felt for a long time like we needed to increase the amount to actually line up with 10% of our income and that we needed to also give that same percentage from the severance package he received. I dug in a bit because we would “feel it” and “what if something happens?” And then every time I turned around it seemed like everyone (two different sermons, the word of the day on k-love, a friend, a devotion I was reading…) was reminding me of the verse in Matthew where Jesus talks about the Father providing for the birds of the air and for the flowers and how much more does He care for us and again I heard God say, “Do you trust me?” So I agreed, admittedly quite hesitantly that we needed to increase our tithe because when the smartest being in the entire universe asks you to trust Him, you kind of have to do it. 

And friends, He sees our needs and He will provide for them, especially when we are faithful in doing what He asks us to do which at the core is to trust Him, for everything.

Because God knows me and wants to be sure I know He’s got us, I got confirmation of His faithfulness and His provision and His perfect timing. And I’d like to share the story just in case someone else might need the encouragement.

This afternoon I was pouring over grocery ads and trying to plan meals and stretch the buck for the next several weeks. Our first paycheck from Vince’s new job doesn’t come in until June 7th, and our last one was the severance check and most of our bills are due before we get paid next and I was feeling a little stressed. Then, unexpectedly,  a car pulls up in our driveway. It was a dear friend dropping by an envelope with a monetary gift. It turns out that they had been blessed a little more than they needed and after praying about what to do with the extra money, they determined they should share some of it with us. While my friend was still here, the mailman dropped off the mail which included an envelope with no return address and a note saying whomever sent it thinks about us often and hopes the gift card to a nearby grocery store helps us out.

Guys!! the two gifts equal my grocery budget!!!! And they arrived while I was trying to figure out how to buy groceries!!! Whaaat??!!?? We are beyond blessed by the generosity of God’s kingdom here on Earth and we are excited to see how God guides us to pay it forward because we are rising to His challenge to trust Him in all things.

When you go all in for God, He goes all in for you and that is where we find freedom and joy even in the midst of uncertainty.

Finding Joy in the Midst of Exhaustion

~ Mandy Hawks ~ Leave a comment

It’s been raining here for days. I feel like I haven’t seen the sun in more than a month and that just adds to the exhaustion that is already weighing me down. It’s not the kind of exhaustion that you can cure with a nap or a good night’s sleep. Believe me, I have tried. Our full time nurse is back from her vacation and I have gotten at least 8 solid hours of sleep the past two nights. No, this is the incapacitating, unadulterated, unforgiving exhaustion that comes from almost 3 years of almost constant grief, anxiety and stress that at the very worst is raging and debilitating and at it’s best lurks just below the surface nagging at you like a tickle in the back of your throat, threatening to steal the small slice of happiness and peace you happened to find in between meds and trach changes and therapies.

It’s finding out a year after a traumatic cranial surgery that almost claimed your daughter’s life, that you have to do it again because the defect recurred.

It’s praying hard for someone else’s child with the same defect as your daughter and hearing that they didn’t make it, that they couldn’t fight any more and feeling grief and guilt and relief that it wasn’t you and guilt all over again, all at the same time.

It’s a years worth of nights of broken sleep or not enough sleep, or no sleep at all because your night nurse was sick or you just didn’t have coverage and there were meds to give and alarms to silence and feedings to refill and kids to comfort.

It’s bearing the burden of isolation and sacrifice in order to keep germs away because the common cold is a terrifying and deadly enemy.

It’s knowing that you have at least another 10 years of this, if the doctors are right.

But even in the exhaustion there is hope.

There is learning how to be strong and brave and to persist against the odds.

There is the supernatural knowing that prayer is not about the outcome but about learning to live a life dependent on a God who is faithful and good no matter what we face.

There is the gratefulness that comes with those sleepless nights because it means your child came home from the hospital.

There is the joy of dancing and singing with a child who doctors said would never walk or talk. And the craziness of chasing after two toddlers who are running in opposite directions.

There is the satisfaction of getting to the end of a cold and flu season and not being admitted to the hospital for illness despite the ICU doctors being sure they would see you.

And there is the faith that even though the road ahead of us is long, it has been paved ahead of time by the creator of the Universe and it won’t last forever. But until then we will “run with perseverance the race marked out for us, fixing our eyes on Jesus” because it is in our exhaustion that we find His strength.