What Makes a Year Good?

The end of the year.....In some ways, I use to dread it as I took stock of everything that happened in the course of 365 days. An evaluation would then be made to determine if overall the year was a "bad year" or a "good year."

The mental checklist was something like:
-Have we had many hospital admissions, illnesses, or unexpected health issues? If yes, that's a big indicator of a bad year.
-Have we had lots of medical bills? If yes, another sign of a bad year.
-How much money is left in savings? Not much? You guessed it, blame it on a bad year.
-Was I able to stop stress eating and FINALLY get into those smaller sized clothes I've been saving for "one day?" No, still in the "temporary" fat jeans? Yikes! Another sign of a bad year!
-Were we able to take that vacation that we dreamed about taking at the beginning of the year? Occasionally, the answer has been yes and finally a point was scored in favor of a good year.
-Have we had a major crisis that was unexpected and caused a disruption to our life? Most likely, every year the answer was yes & thus, a bad year was the final result.

The year end evaluation based upon these factors mostly seemed to point to one thing. Bad, bad, bad. But, I don't feel "bad" about my life. Sure, there are days that are hard and are bad. Any day that involves the ICU, respiratory distress, surgeries, or panic at 2 am aren't necessarily ideal, but they pass. There are plenty of good, happy times too. Why does bad seem to be the main descriptor of my year then?

A couple of years ago, I started to take stock of how I was taking stock of my days and my years. I now understand my unrealistic expectations were always resulting in my year being "bad." A year without hospital admissions would be awesome, but maybe it's not attainable. If that's my goal, then I'm setting myself up disappointment. I once dreamed of a day when Jaycee would be off medications. Over the last two years, we have added more and more medications. It's unrealistic for no medicine to be a goal; it's a fantasy world. Being upset that medical bills prevented us from buying some new object of our desire, just seems trivial. And should my pant size really determine if my year was good or bad?

A good year is simply this, am I ending the year:
-loving my family well?
-loving God and following His commands?
-demonstrating God's love to people?
-in a better mental state than I started?
-with my husband and two children alive?

Yes? Forget the other stuff! It's been another successful good year!!

A Label Change

For years, I have labeled Jaycee as "nonverbal" because she primarily does not use words to communicate. She has signed or used her communication device instead. Nonverbal seemed to best describe her. Her words, which were only a few, were rare occurrences.

But this year, Jaycee has started saying more words. She still doesn't have a large vocabulary by any means but she does say words daily now.

Her current word inventory consists of: mama, dada, bubba, bye-bye, love you, maw-maw (Grandma), papa, high, Paul, hot, up, boom, pie.

She also tries to sing along to songs making her own sounds and can even make some animal noises. This year has been her biggest vocabulary growth. Still, for an almost 9 year old, I would say her expressive language would be equivalent to that of a 15 month old. Her verbal speech is still extremely delayed. Signing and her communication device are still her primary modes of communication.

When I refer to her as "nonverbal" now, it feels inaccurate. People generally think of nonverbal as having absolutely no speech, so they act surprised when Jaycee says anything. Then they give me a puzzled look as to why I call her nonverbal. Maybe it is misleading at this point in her life...

After reading some other professional opinions on how to best describe her, I believe it's time for an official label change. From now on, I will refer to her as "minimally verbal." I think she bets fits this category. She uses speech daily now, although it is still very, very limited.

Maybe just maybe....one day she can upgrade from minimally verbal too!

Surprise: You're having a date!

I have many excuses for not going on a date with my husband:
-We have a very limited number of people who can babysit Jaycee.
-Jaycee requires 50 minutes of medicine and airway clearance every morning and every night.
-Jaycee sleeps with a bi-pap every night and goes to bed at 8 pm, so that makes evening dates next to impossible.
-If she is even a tiny bit sick, she is usually home bound and requires even more medicines and airway clearance.
-Jaycee is very routine oriented. If I change her evening routine, she can get extremely uncooperative.
-Gosh, I'll admit it! I like routines too. Planning a date around our schedule requires too much thought and effort.

This year, these excuses have resulted in one magical date night for our anniversary. Yes, one. Any date that includes seeing the Godzilla movie must be special! We sort of had one more date night if you count the dinner we had while we attended a Down syndrome conference. My husband said the hours of classes we took before we got to that dinner made it not count. There have been several short lunch dates at local restaurants during the week while the kids were in school. So, we do go out just not anywhere special or the slightest bit romantic.

Last week, we had date night number 2 for the year.

Some thoughtful people from our church proved they could be private detectives by secretly gathering information about us, planning a date based around our interests, and a big surprise reveal for us.

The date plans were revealed in the middle of a fake interview at our home for what we thought was a video for church. It was clever. It was surprising.

I have had many surprises the past few years, the majority of which have been bad and negative. I honestly forgot how nice a good surprise felt. The kids received several presents. We received tickets to see our favorite Christian artist, Toby Mac, a hotel room, gas money, and a restaurant gift certificate.

I couldn't believe that our family was picked to receive a blessing like this. And I couldn't believe our church, which is attended by hundreds of people, thought of us and our family. The night we received the gifts, I couldn't sleep from excitement.

A few days later, I was still excited as we made our way to the concert. It was fun and uplifting. We got hours to talk to each other without interruption or thoughts of medicines. We stayed out until 11 pm; that's rare for us! We slept in until 8:30 in the morning (also rare). We traveled with 1 suitcase and no medical equipment! I missed my kids but enjoyed the time with the man who stands by me during all of our crazy ups and downs.

It was a date night that neither one of us will forget for a long time!

Thanks Crossroads Bible Church!

The Week of Sickness

What does snot, coughing, and fevers mean?

It means last week was spent nursing my child back to health. Jaycee's combination of sleep apnea, lung cyst, asthma, and heart history means that a simple cold can go straight to her lungs and result in a hospital admission. Not every cold puts her in the hospital, but every cold does cause a temporary change in our schedules.

Here's was last week entailed:
-3 nights of waking up at 2 am or 3 am because Jaycee was sick
-Approximately 32 breathing treatments
-14 nebulizer treatments of hypertonic solution, which breaks up her mucus
-Approximately 29 vest airway clearance sessions...each lasting 20 minutes
-Several doses of Tylenol and Motrin
-5 days of antibiotics
-2 trips to the doctor
-Multiple spot checks with the oxygen saturation monitor

And did I mention I tried to work a couple of days last week too?

Yes, I was tired. It's hard to keep track of all the medications. It's hard for me to relax when I fear Jaycee's breathing could change for the worse at any minute. Yes, there were times I wanted to lay in bed and recuperate myself from the mental strain of taking care of Jaycee while she's sick. It seemed like when I wanted to relax, it was time for me to do another medication. I just had to power through and keep going. It was hard at times. Moms have to sacrifice and do what's best for their kid.

So all of the work did pay off. Jaycee did start to get better without a trip to the emergency room or the hospital, which was a huge deal for the both of us.

My Play List

I'm not a musical person. I can't play an instrument or read music. But, I do like to listen to music. I fill silences in the car or in my home with music.

Years ago in college, I made a decision to only listen to Christian music. I wanted to listen to music that would encourage me, talk about my values, and honor God. This music helps me when I'm struggling or when Jaycee is sick. So, today I'm sharing my play list with you. All of the artists are Christian but the music varies from hard rock to softer worship music. Check these bands out if you need a pick me up!

My "Feeling Kind of Down, Need to Pray" Playlist:

• Good to Be Alive by Skillet
• Sick of It by Skillet
• Fighter by Jamie Grace
• Oceans by Hillsong United
• Our Father by Bethel Music
• Closer by Bethel Music
• Unstoppable Love by Kim Walker-Smith
• Speak Life by Toby Mac
• Eye on It by Toby Mac

My Playlist for when Jaycee is in the hospital:

• Christ the Rock by Kim Walker-Smith
• You Are Good by Bethel Music
• Whom Shall I Fear by Chris Tomlin
• Burning Ones by Jesus Culture
• Revelation Song by Jesus Culture
• Nothing Holding Me Back by Bryan & Katie Torwalt
• Set a Fire by Jesus Culture
• Baptize My Heart by Misty Edwards
• The Lord Our God by Passion

My Special Chores

My Special Chores.......A peek into the life of a mom caring for a child with special needs:

• Once a week, clean Jaycee's bi-pap parts. This involves taking the hose off, disconnecting the mask, taking off the air filter, taking out the water chamber and submerging all in soapy water.
• Clean the AFO braces once a week with soapy water.
• Clean the inhaler aerochamber once a week. This involves soaking the chamber in soapy water for 15 minutes and air drying overnight.
• Once a week, I clean the nebulizer mask. Periodically, I change the tubing on the nebulizer.
• Once a month, check Jaycee's night diaper supply & reorder if necessary.
• Once a week, check the medications to see if any need reordered. Go to the pharmacy if needed.
• Schedule doctor's appointments and move things around at work to adjust for them.
• Dust the house regularly to prevent allergens from building up.
• Monthly, check the stock pile of various medical supplies like oxygen tubing and saturation monitor probes.
• Regularly change messages or add pictures to Jaycee's communication device A.K.A the talker.
• Every couple of months, change the filter on Jaycee's airway clearance machine.
• At the end of the week, I plan my meals for the next week. Ever since we learned Jaycee has severe acid reflux, I do my best to only have 1 or 2 meals a week that could possibly be triggers for her reflux. I make sure I have the foods available that are good for Jaycee to eat that won't cause her reflux. This does take some planning and thinking!

Awkward Moments

When you have a child with special needs, there are some unsuspecting, awkward moments that happen.  I hate when these awkward situations arise that I'm totally unprepared for. I never know how to react and are usually so stunned that I don't end up reacting at all at the time.

Imagine being me, the mom of a sweet child with Down syndrome who attends a special education program, when people make these statements:


"I heard some terrible news. The doctor thinks that Mrs. Jones is going to have a baby with Down syndrome."  

"I just found out that I'm having a baby with Down syndrome, and I'm not sure I want to keep it."

"We need to have special prayer with our church because we think we are having a baby with Down syndrome." Followed by several minutes of prayer for the unborn baby not to have Down syndrome.

"I wish my child didn't have to have an IEP. It's so sad."

"I don't want MY child is the special education room. That's for kids who are really bad off, not MY child." (I have heard this one several times!!!)

"I don't want MY child in the special education room with all those special ed kids who are mean and don't talk!"

"Can you believe she did that? She's so retarded?"

"I told him that he's doing it wrong. I told him that's the way the special kids do it."

*****

Ok, I know people make mistakes and sometimes you say some things without thinking. But, really sometimes I can't believe what people say to me. 

Please friends, family, and professionals, think before you speak and apologize if you said something offensive.

And to my fellow moms who find themselves in these awkward situations, practice forgiveness, love, and patience. Respond in love because most people really don't know they are being offensive.