Wednesday, September 23, 2015

When you have R Rated Memories

Sometimes my memories are R rated straight out of a horror film.

My R rated memories are graphic, scary, gory, painful or plain old awful and inappropriate for those under age 17.

When Jaycee came home in June this year after a three week hospital admission, my R rated memories of that admission were flooding me whenever I wasn't busy for a minute. The sounds and sights of Jaycee being suctioned down her intubation tube was horrific. The panic came back when I thought about her blood pressure dropping multiple times.

Beyond this last admission, there have been numerous times in the past 9 years when a moment became a long lasting R rated memory. Without being too graphic, here's a few:
  • The moment Jaycee's heart rate was in the 200s while the ER staff frantically worked and I saw a crash cart wheeled near her for the first time (Thankfully it wasn't used.)
  • Watching Jaycee's chest tube come out after her heart surgery (Trust's gross. My husband got physically sick during this!)
  • Seeing multiple unsuccessful IV attempts on an infant Jaycee until they finally got one in a vein in her head
  • Seeing Jaycee turn blue multiple times at home due to respiratory distress and frantically trying to administer her emergency medicines
  • Seeing the puddle of blood when I stood up from my wheelchair at the hospital during my miscarriage
  • The times I have been given terrible news about Jaycee's condition worsening (Multiple anything you have seen in a movie X 100)
  • Watching a PICC line come out of Jaycee's arm (Once was enough for me! Didn't watch the second time!)
  • Seeing Jaycee being bagged in an extreme oxygen desaturation in the ICU (Second and third time was just as scary)
  • The "crime scene" look to Jaycee's bedroom after her hemorrhage post tonsillectomy
  • Knowing the child in the ICU room down from us is dying and seeing the parents walk out empty handed afterwards (Broke my confidence that only miracles happen in ICU)

What do I do with these R rated memories? They happened. It's part of what has shaped my life, my thoughts, and how I view the world. There's plenty of them to sift through too. My question in my prayer time with God this summer was, "God, what am I suppose to do with these awful memories?"

Choosing not to think about them seemed like avoidance and denial. Not dealing with them felt as if I never worked through them. Yet thinking about them made me feel depressed, anxious, and fearful.

I wanted to get my R rated memories down to a manageable level where I could think about these things without so many emotions.

I learned from wiser Christians how to pray about these memories. I prayed that I would no longer have those emotions when they popped up in my head. I prayed for my peace. I prayed that God would help that old self of mine in those memories to be strong and be comforted.

Memories after all are just memories. The fear that accompanies some of them is no longer a real threat to me now. I survived these experiences. They are over.

And so I will keep working on these R rated memories so that they will no longer feel like I'm trapped in a horror movie in my mind but more like a boring, low-key documentary.

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Tuesday, September 15, 2015

The Mistake I Almost Made

Last week, I published To the Pastor Who Baptized My Daughter. It had a good response, but it wasn't my plan for last week.

I originally started writing "Is there a place for Jaycee at church?" The idea for this came from a negative experience I had with a Christian recently. This sweet lady told me about praying for Jaycee, which I was glad to hear given her health problems. But then she went on to clarify that she's praying for Jaycee's Down syndrome to be healed and encouraged me to believe.

That statement hit me like a punch to the stomach. Let me explain the best I can. I believe in healing, but I guess I'm long past thinking Jaycee needs healed of her Down syndrome. When a Christian says that to me, I hear: "Your child needs to be healed in order to be ok in church."

Maybe you think I'm off base, but I have had experiences within the Christian faith that you haven't. I have had people suggest (or accuse) me of sinning to cause my daughter to have problems in her life. I have been encouraged to get the demon out of Jaycee's life so she could be healed of Down syndrome. These experiences leave me feeling like a second-class citizen in church at times.

I left that encounter with that lady with my head down, my mind racing back through previous comments I took offense to, and feeling bad about my family.

"Will Jaycee ever be completely accepted in church?" I asked my husband.

I teeter totter back in forth with this question as a person of faith who believes in prayer but also believes that people with chronic health issues and disabilities need to be accepted in some respects just as they are.

I just want Jaycee to be viewed as someone worthy of being in church even if she has Down syndrome and health issues. I don't want random people to walk up and start praying for her chromosomes making her feel bad about herself, especially as she gets older. I look past her Down syndrome. I love her the way she is. I don't want her to struggle but I don't want her to think she is less than because of 1 extra chromosome.

Getting back to my mistake....I was going to write a blog about all of this and how Jaycee doesn't fit well into the church. I struggled to write this blog. I typed, erased, retyped, cut, deleted, and finally stopped. Then God put on my heart the idea for the letter to Pastor regarding Jaycee's baptism.

It was as if God was answering the very question I was asking. Is there a place for Jaycee at church? The answer is yes. Jaycee was accepted enough by our pastor to get baptized while surrounded my many family and friends in support of her. More importantly, God accepts Jaycee. I believe God is pleased when Jaycee dances in church and wants to sit in the front row. I think God looks way beyond the Down syndrome too into her heart.

Maybe not every Christian will say and do the right things with Jaycee, but their intentions are good. Their heart is in the right place. They want the best for Jaycee, and I should not let their word choice bother me and get me down. I too have said many dumb things over the years that hurt people unintentionally. Therefore, I will extend that same grace to those as I wish to have for myself.

I'm thankful I didn't write that blog full of frustration and hopelessness, and I'm glad to be reminded that Jaycee does have a place with God and in the church.

Jaycee praying with a group of children at church.

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Tuesday, September 8, 2015

To the Pastor Who Baptized My Daughter

Pastor Chad,

It's hard to believe that almost 1 year ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee has been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God. Christians generally believe that in order to be baptized, they should first confess Jesus as their savior. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines from being in septic shock and pulmonary and cardiac failure. I suddenly had a burning desire to get her baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special.

I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You weren't in the bathroom with us one Sunday when Jaycee pointed to the door of the baptism and signed "I went swimming there." You weren't in the living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." You haven't been in her room to see the pictures displayed that church gave us of her baptism so she can look at, remember, and tell visitors of her "swim" at church. You weren't there when other parents of children with special needs asked me how Jaycee did the baptism with no fear and wondered if their child could do it. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit just a few months ago with Jaycee in respiratory failure again, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub. We are looking forward to talking to Jaycee about her upcoming baptismal anniversary, and it's all thanks to you!


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Tuesday, September 1, 2015

Pillows on a Couch & Other Things that Upset Jaycee

Jaycee loves routine and things being a certain way.

Sometimes, this is very helpful as she knows what to expect. At times, it can be humorous. Other times, it can be a problem.

Here are some things Jaycee does that must be done her way.
  • If Jaycee and I have Netflix time in my bed, Jaycee must get into the bed first. She will scream and cry if I get into the bed first. I don't know why it matters, but it does to her.
  • I drive a van. My husband drives a truck. Jaycee gets very upset when Jason drives us in my van. She will sometimes scream and refuse to get in the van because I'm not driving.
  • If I enter my van and sit down before Jaycee, she will get upset too. She thinks she needs to get into the van before me. Maybe she just likes to be first?
  • If Jaycee is sitting on our couch, the cup holder next to her must be empty or have her cup. If dad's cup is in the cup holder, she must take it out and put it somewhere else. She can't stand for the cup holder to have something in it that's not hers!
  • Our church has several computers with touch screens to check in the children before service. We always use a certain computer. If someone is using it, Jaycee will cry, scream, or throw herself down because someone is on our computer. It doesn't matter if we can use the one right next to it. It's not the same to her!
  • Our church has several doors to enter. Usually we park in the back and go in the back door. When I change it up and park in the front, Jaycee gets upset. Sometimes she has screamed and cried all the way into the church all because I am making her come in through a different door! My favorite time was when she repeatedly threw herself down because I dared to go in a different door. I needed a minute with Jesus after I finally got her into church because I was pretty angry by that time!!
  • If we go to a local restaurant, Jaycee will want a seat we have previously sat in. There have been times when she has stood by "our" occupied table staring in unbelief that someone could be sitting there. Sometimes, it upsets her and sometimes she just walks to another seat. Her memory for our seating patterns is amazing! Some kind people have offered to move seats for Jaycee when they hear why she's staring at them, but we never let them move.
  • At bedtime, Jaycee has to have her dolls and stuffed animals just so. If we touch one of her dolls, she gets upset and has to start the whole process again.
  • Jaycee always flushes the toilet before she stands up. When she encounters a flushing toilet that activates when you stand up, it confuses her. She looks around for the flushing handle and can't figure out what to do.
  • Jaycee hates pillows on furniture. She has to throw pillows off any couch or chair she is near. For some reason, pillows on the furniture bother her but pillows on the floor are just fine.
  • She HATES when people at the grocery store help carry out my groceries to my van. I don't know if she thinks they are going to steal our food or what, but she will scream and cry at these people until they leave our groceries alone.
  • The lid to the trashcan must be closed at all times! EVERY time she walks by the trashcan, she will shut the lid if it is open. I must admit after laughing about her need to shut the lid, I soon discovered that all 4 of us in this house must shut that lid when we walk by it!

As you can see, Jaycee likes routine and order. Some of her preferences add humor to our life. Some add stress. The problem with these problems is what to do about them. As someone who hates to make situations worse, I know things that will set her off so I go along with her preferences. At the same time, I am feeding her need for things to be the same when I go along with her. But I also don't want to deal with a screaming child that can't communicate enough to have a conversation about what is wrong. It's a dilemma.

And this is one of a hundred thousand reasons why parenting is a hard job! 

This is Jaycee upset on our Make-A-Wish trip because we were riding in a limo and the limo driver was putting our bags in the car. She didn't like that!

Full disclosure: I can easily make a list of my own compulsive behaviors, so Jaycee comes by it honest!

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