Tuesday, November 24, 2015

Irritating Things I'm Thankful For

I don't like writing when I'm given a topic. I like to just write about whatever I have been thinking about for the past week. With Thanksgiving being this week, what kind of a person would I be if I didn't do a post about what I'm grateful for? I'm not even doing daily post on Facebook about what I'm grateful for. If I didn't write about thankfulness, it would just be a slap in the face to Thanksgiving.

I said a prayer asking God to show me what to write. This post was the response.

The NDSS reports, the life expectancy of a person with Down syndrome was just 25 years old in 1983. Today, the age has increased to age 60. Medical advancements have helped make this possible.

There are times when I get upset about the daily medical interventions we must do with Jaycee. But, God reminded me that the very things that sometimes feel irritating are the things I should be grateful for. They are helping to keep Jaycee healthy and alive.

Here's Jaycee's medications. Recently, medication number 10 was added. Instead of being upset that her medications keep increasing, I'm going to be grateful that there are treatments available for Jaycee.

Jaycee's vest airway clearance machine is next on my list. Twice a day for 20 minutes each, Jaycee uses this machine. I am thankful there is a machine that can help Jaycee's cough when her lungs are getting filled with mucus. I'm thankful this helps treat her lung cyst. I was thankful the day that our insurance approved this expensive machine, and I want to remain thankful.

This is Jaycee's nebulizer machine. When Jaycee started using a nebulizer as a toddler, I erroneously thought it would be temporary. It wasn't. Jaycees still uses this a minimum of twice a day. This little machine has become an important part of keeping Jaycee's lungs healthy. I'm thankful that Jaycee has this machine even though it eats up time every day.

Finally, this is Jaycee's bi-pap machine for treatment of her obstructive sleep apnea. Jaycee was just 3 years old when this machine came in our lives. For the last 6 years, this machine has dictated many things in her life in regards to when and where she can sleep. Yet, I should be thankful that Jaycee has a machine that gives her a way to breathe at night.
These medications and machines seem to limit our lives at time. Decisions about where we go and what we do cannot be made without factoring in these four items. Sometimes, this irritates me. But this Thanksgiving, I want to be grateful. I'm grateful these interventions are available to Jaycee to give her a better and longer life. 
Here's my challenge to you. Do you have something in your life that you need to have a different perspective about? Maybe something that irritates you is actually something you should be grateful for. 

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Tuesday, November 17, 2015

Your "Worst Thing"

Life is not always easy. In fact, sometimes it is just plain hard, not to mention unfair. We all go through things in our parenting life that remind us of this fact.

Parents often have an experience that they will describe as the "worst thing you can go through" as a parent. These experiences vary greatly. Some things people share as their worst seems like nothing to me. Other stories are unquestionably a candidate for the "worst."

Here's what I have come to understand. Perspective is everything.

When Jaycee was born and diagnosed with Down syndrome, congestive heart failure, and an AV canal heart defect. I can tell you that there were many things that were hard when she was born. I couldn't breastfeed as I had originally planned. I didn't get to bond with her like I wanted because she was in the NICU. And her Down syndrome was a shock. But the absolute worst thing at that time was Jaycee's heart condition and the worry that she may not live.

Over time, my idea of the worst thing you can experience as a parent changed. There were so many experiences I have lived through, and they each impacted my view on life. A miscarriage? It was a sad time, but not my worst. Jaycee's heart surgeries? Those were extremely stressful, but not my worst. Doing medications daily? Difficult but not the worst.

My worst? I have two.
1. One of the worst things I went through as a parent was when Jaycee got very sick, went into respiratory failure, was put on a ventilator with tubes and lines ran everywhere, and spent weeks in the hospital. There were so many times during the hospital admission that Jaycee gave us a scare, leaving me sitting in the parent lounge crying and praying for my child to live. Thankfully, she did. But this didn't happen once, it happened twice. Emotionally, I felt beat up after both events for a long time.

2. My other worst experience has actually occurred multiple times. Jaycee going into respiratory distress at home has been very frightening and has impacted me long term. The stress and fear that hits me suddenly when I see my child with blue fingers and toes cannot be described. I have to suppress those emotions because I have to act. I have to grab inhalers, hook up the oxygen tank, and call for help. Seeing this once was bad enough, but it's happened more times than I can remember. There's always a fear of 'can I help her in time' running through my mind.

There are many parents that can't relate to me. And truthfully, I can't relate to many parents. I use to get annoyed when people would talk to me about what they described as their worst thing. I listened to a story of their child getting ear tubes that scared them while I wanted to roll my eyes. There was lamentation expressed by another for not being able to breast feed when I just wanted to tell them to get a grip. There was a mom in near tears telling me how she was treating her child at home for bronchitis. Sigh! If only these were my problems, I'd say to myself. Maybe I was jealous. Maybe I needed more sleep. But, I hated hearing stories of people describing their "worst" thing that wasn't even on my radar.

But then, I occasionally meet someone in the hospital with a child who has been there for months, and I realize my situation looks pretty good. Even though my problems look easy to these hospital veterans, they are still really big issues that affect my parenting life.

Here's what I have come to understand. Everyone's worst may be different, but this is not a contest (and certainly not one you want to win). Just because your "worst" may be worse than someone else doesn't mean others aren't justified in how they feel. People are entitled to feel the way they feel. Their pain and perspective is valid to them, because it's all they know.

We need to be more compassionate with each other. We need to pray for parents going through their "worst" thing. You might have some wisdom to share with that parent. You might have a word of encouragement to help them get through their worst time. So don't discount their worst time, but see it as an opportunity to show Jesus to them.

Jaycee and her machines during one of worst times in the hospital. Here's the truth. This happened 2 years ago and I can barely stand to look at this picture and think about it.
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Monday, November 9, 2015

Order in the Chaos

My life feels chaotic often. Surgeries, hospital admissions, and illnesses with Jaycee have created times of complete chaos in our lives. They disrupt work schedules and obligations, cancel vacations, and force us to stay away from crowds of people and their germs. One illness can affect our lives for weeks making it difficult for me to even get to the grocery store.

As a Christian, I often look for "signs" that God is in our situation. These signs come in all different forms. A sign could be a meaningful scripture I read during my Bible time, a text from a friend at just the right moment, a song that speaks to me, or something out of the ordinary that happens.

Last week, I got a new sign that I needed after another recent hospital admission. It's hard not to feel beat down after another admission and another three weeks of chaos in our lives. I wasn't necessarily praying for a sign. I just wanted to know God was here and that He cared for my family during all the chaos.

So last week, I was standing in Jaycee's bedroom next to her chair giving her a puff from her inhaler for the umpteenth time in her life. I looked up at the memory box hanging on her wall directly in front of me. The box has her hospital bracelets and the ultrasound telling us that our sweet baby was to be a girl. For some reason, my eye was drawn to the date of the ultrasound. And there it was....a sign. A neon, flashing bright sign! October 19, 2005 

Did I read that right? My eyes checked it again and again. I couldn't believe this important day in our lives was on October 19.

What's the deal with the date you ask?

If you study my blogs intensely, you might know. But if not, I'll go over it again.

In 2013, septic shock, ARDS, respiratory failure, pneumonia, and rhinovirus almost took Jaycee's life. She survived a 4 week nightmare and was discharged on October 19, 2013.

One year later, she was baptized in our church on October 19. It was only after the baptism that I was able to connect the dots by going through her old posts on a website I use to keep family and friends updated on her health. When I found the October 19, 2013 to 2014 connection, I was ecstatic. It was a sign then to me that God was reclaiming that time in Jaycee's life for good.

Here I was standing looking at Jaycee on October 19th, 2005 through an ultrasound picture in her memory box (the white box to the left of the door). I couldn't help but smile as I looked to the right of the door. There in the black frame was Jaycee's baptism on October 19th, 2014. Two pictures feet away from each other on the same day 9 years apart. I couldn't have planned that better if I tried....the ultrasound showing Jaycee before she born near the picture showing Jaycee being baptized to new life.
Are you still wondering what the big deal is?
To me, it signaled that there's actually a Godly order among the chaos happening, assuring me that God is around. But maybe it takes me awhile to notice!
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Tuesday, November 3, 2015

When Your Kid Is Mad at You

It happened 4 years ago, but I remember it well.

My son was very upset with me. He didn't not scream at me or use harsh words. Instead, he ignored me, refused to give me affection, and withdrew from me ever so slightly.

I had just returned home from an emergency hospital admission with Jaycee. It was one of those admissions where I left in the middle of the night leaving Elijah with a grandparent while I rushed Jaycee to the emergency room. For about a week, I stayed with Jaycee in the hospital. Because Jaycee had RSV, Elijah was advised not to visit.

When I returned home, Elijah was upset. He was not quite 2 years old, but he had felt the impact of being away from his mommy for a week. He was letting me know about it. Elijah and I always snuggled, hugged, and kissed at bed time. The first night I tucked him into bed, he withdrew. He would not kiss me. I was shocked and a bit hurt.

This continued for weeks. Obviously, he was young so he relied on me for basic needs. But our relationship had changed. He was mad at me. I tried to reassure him. I tried to explain to him that his sissy was sick and that I had to help her in the hospital. He couldn't grasp this at his age. He only knew I had suddenly disappeared and then suddenly reappeared a week later.

I responded to him the only way I knew how. I kept loving him and pursuing him. I hugged him, kissed him, told him I loved him, and eventually he came around. I'm guessing he began to feel safe and secure again.

That was the first time I knew a medical emergency had an impact on Elijah. I learned from that experience and used it to help for future emergencies. As Elijah gets older, I ask him questions about how he feels and give him opportunities to talk things out. Jaycee's illness takes a toll on all of us in the family, no one is spared.

A few weeks ago when Jaycee went into respiratory distress at home, I had to leave Elijah around 11 at night. My husband stayed home with him while I went to the emergency room. When Elijah woke up, my husband broke the news to Elijah. He cried.

The two of them then made their way over to the hospital that day. As I ate lunch in the hospital cafeteria with Elijah, a few times he remarked how he didn't know I had left last night. I told him that it wasn't planned, and I knew his daddy would take care of him. That seemed to satisfy him for the moment, but I knew he was upset with me.

After spending almost a week in the hospital with Jaycee, I returned home with her. Over the next couple of days, I tried to give Elijah some extra attention and talk to him about what happened. He continued to tell me that he was upset that I didn't tell him when we left for the hospital. Waking him up at 11 at night didn't seem like a good idea. After all, I was leaving him with his dad. Still, I guess he felt abandoned by his mom again. We talked it out knowing full well this could happen again. We discussed what we could do different next time. We came to an agreement. Next time, I would write him a short letter for him telling him what happened. He thought that was a good idea.

All relationships take work, especially when a medical crisis is regularly involved. When my child is mad at me, whether I can help it or not, I do what Jesus did. I try to respond with love. Love and time is the best I can give.

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