Thoughts On Life

Holiday Like It’s Your Last

I’m afraid to write this post. Mostly I’m afraid because it could be taken in the very opposite way of what I would ever want it to be taken. But aren’t most things in life that way? Two sided?

I’m going to write it I though because I think it needs to be said. Cue the deep breathing.

What would you do if you knew this was your last holiday on earth? Who would you go see? How would you celebrate?

There’s no reason to panic here. No reason to buy exorbitant gifts or frantically try to send out cards or burn your old journals. Just a quiet reflection on what really matters most in your life right now and a refocus on being intentional with it.

Ever since Covid hit, I’ve been rumbling with deep questions and thoughts. I keep seeing two sides of extreme opinions and I honestly feel like I waffle back and forth between the two.

Obviously, the thing most people want to do is to love others well. Love. Love . Love.

Some people show love well by quarantine. Some people show love by working in hospitals. Some people show love by running the trash trucks. Some people show love by sharing their provisions. Some people show love by showing up at their sick parents houses and sitting with them and making them laugh. There So much love everywhere when we look for it!

In a world that speaks so much of hate and hurt, all everyone wants, deep in their heart is to be loved. It just looks different from a variety of glasses.

There are all kinds of opinions and mandatory restrictions over this holiday season. I’m not writing this to tell you what to do or add to the confusion but I have a message burning in me and so I write.

All through this year, while people were speaking of the pandemic and how best to show love, I would remember our daughter Kierra. She was definitely a high risk child. Winters were often spent either at home or in the hospital because the risk of her getting sick or actually being sick was frankly was quite high. Every cold could lead to pneumonia. Every pneumonia could lead to kidney failure and every kidney failure could lead to respiratory failure. Which would lead to death.

There was no cure for her condition. No tidy answer. Just managing the symptoms and trying to keep her immune system strong. Sound familiar?

Now I know that Covid is a pandemic. I am not for a moment saying it’s made up or related to my daughter’s disorder. My heart hurts for all the lives that have been forever changed through this illness. So in some ways, we aren’t even dealing with the same issues.

In other ways, we are. Kierra was high risk for any illness. We kept her home during cold and flu season. We never fully expected to go anywhere unless we actually got there. Our plans could change at a moments notice.

We didn’t ask others to accommodate our daughter’s health needs. We didn’t normally demand extra precautions. It was our responsibility to care for her and do what we could to protect her from viruses. It became our own personal normal.

We also took a trip I will never regret. A road trip from Pennsylvania to Montana with our daughter. It was one of those trips where the whole time you were packing, you thought you were totally 💯 crazy, but the feeling of doing the right thing was so strong, that it outweighed the ‘what if’s’.

What if she would get sick in Montana and we wouldn’t have our pediatric hospital? What if she got sick on the way and we were stranded in a strange hospital? What if she contacted a virus on the trip and came home sick? What if the altitude made her breathing worse? What if we were irresponsible to go so far with a special needs child? What if she died?

Kierra’s grandparents had been missionaries in Central America since she was a baby and they had never had a good chance to connect with her. I felt a certain urgency to take the trip and enjoy some time with them and also get to visit our old home state.

We went on that trip. It wasn’t all easy. I mean just hauling the stuff into the motel room was like a marathon chore. Oh the memories!

And this was just one load.
My spot was right there beside her among all those blankets and stuff for about 30 hours. One way.

But we enjoyed our time so much. Kierra seemed to love Montana and although she needed more oxygen then normal, she thrived. She ‘talked’ and waved her little hands and smiled and giggled. She relaxed more then I thought she would.

It was such a gift to all our hearts. It was healing and special and connecting.

A month later, when Christmas came, we once again decided to make a trip to my family for the day. They lived only 4 hours away instead of 30 but it was still a big deal to pack everything up. Kierra didn’t feel well on Christmas Day.

But the love poured on her and the support given to us was so special and priceless.

Those two holidays were the last times Kierra was at her Grandparent’s house.

She passed away in January. Two months after being in Montana and one month after being in Maryland.

I will never regret taking the risk. Love beat death. Spending that time with family can never be replaced. I will always be grateful we had that opportunity. Her disorder prevented us from doing many things, but they did not define her.

We chose to live like there was no tomorrow. Because really, there was no promise of even one more day.

I know. It’s not going to look the same for you as it did for us. It could very well be that loving well this year means staying at home. You may not be able to take the risk of sickness. You may not have sufficient finances. You may have no family to visit. You may be in mandatory lockdown.

I’m sorry. I know this is hard. I know this is lonely and often there are no ideal options.

Hear my heart though? Please don’t allow the fact of dying or suffering to scare you into isolation. Please don’t allow the fear of others to shame you into not taking that meal or inviting that lonely person. Or hugging those grandparents.

Please love yourself well. Do what you know you need to do. There is no reason for shaming over this season. And that starts with you. Give yourself grace. Pass it out freely to others. Your decision is honorable.

My daughter died from respiratory failure but she died well loved.

At her funeral, her Grandpa said he had asked God for One Chance to connect with her while he was a missionary so far away.

When we went to Montana, his prayer was answered. She looked into his eyes (which was rare). They connected.

I had no idea he prayed that prayer. I did know that we needed to go on that trip. I did know, that after that trip, Kierra seemed satisfied. Like she had accomplished a mission that was hers to do.

Two months later, it was her time to go on. To enter the Knowing – the Fullness. The Complete Wholeness that is Hers. The arms of Jesus caught her up.

Pure Joy

Whatever your holiday plans are this year, love deeply. Freely. Fully. You never know when it is your last.

Peace my friend. Peace and love.

Special Kids

A lesson in Comparison and Special Needs Travel

I used to really wonder which child would be more work. Kierra, who can do nothing for herself so needs constant supervision although she is stationary.

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Or Kobe, who whirls through the house and leaves toys flung far and wide  and opens hot oven doors because he just can’t WAIT for his beloved favorite cake.

I woke to the conclusion that as with all other things in life, it is foolish to compare. Each child stands alone in ones own unique personality. Forget the thoughts of ‘he does this, so why can’t she do this?’ or ‘if he would only be tempered a little more like her…’ My kids are each their own very unique personalities, just as my husband and I have our own unique makeup.

I don’t think God meant to make carbon copies. Even in families.  I want to fling my arms and heart wide open and embrace the differences of those around me. Take joy in the brightness and accept the shadows that come with all relationships. ( really, even newborns bring those shadowy 2 AM feedings with them)

When we packed for our 11 day trip to Montana, I knew there would be alot of ‘stuff’.  Traveling with a special needs child literally means moving mountains 🙂 Honestly. I remember staring in nearly rude shock when my In Laws and their two little girls came to visit for a weekend. Each had a small enough suitcase that they didn’t have to check even ONE bag through their flights.

I always realize the huge difference between my kids when we pack up to travel. Kobe needs all the regular little boy things. Changes of clothing, pull ups, coat and mittens and boots, a few toys, a teddy bear, and his wonderful snacks along with his favorite ‘bo bo’ cup.

I finally made a check list of Kierra’s things. The hard part is remembering to stick everything in again that you pulled out of the already packed van because you forgot you would need it one more time 🙂

So if you ever wondered why going away is such a huge chore for folks with special needs…here’s a peek. This is our baggage for one night at a hotel room on our trip. Can you imagine what all else is still in the van 😉

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Staying home looks pretty attractive sometimes:) but then again, getting out and enjoying a change of pace and scenery is nearly always worth it.

It’s not just her clunky oxygen machine that needs to be hauled around, it’s making sure all the back up tanks are full for the travel time. It’s thirty three cans of formula (plus the backup cans for emergencies 🙂 and feeding bags and pampers and wipes and chux pads for accidents. It’s power cords and extension cords (because some motels really have the craziest placed insufficient outlets)  and feeding pump, and IV pole and Pulse Oximeter machine and the back up Suction machine. It’s extra nasal canula, and rolls of tape in every available handy spot and the spare miKey tube and  syringes and extensions and drainage sponges. Then there’s the standard clothing and the coat and the socks.  A whole bag of blankets and pillows for  props so she can sleep comfortably. Not to mention the air mattress that works great for night time and is fairly compact. We can’t forget her meds! All 12 bottles ,or is it 14? And  the container for mixing her formula and the empty bottles to store it in. That ever present roll of paper towels that we use right now for choky episodes. Her nebulizer and vials of medication that go with that.

We throw in handfuls of extra EVERYTHING just because we want to be safe. Even a folder of medical records.

So after we have her all loaded, we have had our work out for the day :0)

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Is there room for me ?:)

The not so great thing is that in some situations you have to do the thing you hate to do… Put a two year old in the front passengers seat.

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Kobe thought he was living the good life! hanging out with Daddy, looking out that big front window…he wanted to pretend to be sleeping for this picture, so i humored him:)

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Thankfully, Kierra travels well usually, but on the way home, she was fighting a cold. I feel better being right beside her to help her if she chokes, or sneezes instead of constantly diving back over the seat and hanging upside down for long periods of time. or missing that tiny window of ‘grab the chokey mucus’ altogether.

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So back to this comparing thing again. How does one compare a lively little boy with a cracker crumb cushioned seat and the cutest expressions about ‘mountains’ and ‘big trucks’ and ‘juice please’ and ‘i need to pee’ and bored fussing noises with this?

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Now you see… it’s not really comparable. They are each darling creations of our Creator with their own sweetness and of course their own not so sweet moments! As different as day and night and as alike as two cuddle bugs.By the way, if it’s not comparable for these two sweethearts…why would it be for anyone else on earth ? 🙂

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Embrace those around you today for exactly the way they are. Sweetness. Hard work. Grouchies. Funniness. Thank God that they are alive and you have the privilege of loving them up.

And while I’m on the subject of loving, i need to brag a bit about my husband :0)

Six years of marriage. Two kids. 7 houses. Cross country move. 3+ jobs. Lots of stress. A wife that can be really —-_ 🙂 And he still surprises me and loves me and believes the best in me through the sunshine and shadows.

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The fragrance of true love. I am so blessed!