Tuesday, March 26, 2019

Just When Is God Good?

God is good. You've heard this, right? It's a common phrase spoken in the church world. I've heard it come from the mouths of many people in a variety of situations.

When a tough situation has an ending that is happy, some are quick to declare that God is good! It's important to recognize God in our victories. He needs to be acknowledged in moments that could have had a much different ending. What about the other moments though? What do we think of God when things don't go our way?

In my 13 years of raising a medically complex child, I have wrestled with this concept of the goodness of God. God is good. God's nature is good because He is love. He never changes. Yet, over the years, I have let many unpleasant circumstances try to slant this truth.

It's extremely difficult to look at your child with a scarred chest after a second heart surgery and declare that God is good. When you hear your child has a rare heart arrhythmia (Wolff-Parkinson-White syndrome) and has a chance of sudden death, you aren't thinking about how wonderful God is. When you find your child in respiratory distress at home causing you to rush into action with medications and oxygen, your immediate reaction is not to say that God is good, especially after this occurs dozens of times. When you are told your child may not survive the septic shock and Acute Respiratory Distress Syndrome as she lays in an ICU bed, God's goodness isn't at the forefront of your thoughts.

All of the scenarios are ones I have lived through as Jaycee's parent. I have had plenty of opportunities to understand the complexity that is the goodness of God. Here's is what I understand: God is good all the time. It's not a cliche; it's a fact.

God's nature is good. That part doesn't change. Even when life is challenging, God's nature remains the same. In my human reasoning, I try to make sense of God through trying times on Earth. But, how can make sense of a Heavenly God when I am trying to view Him through earthly trials? I can't. I must know who and what God is, so I can press on towards the hope of Him.

We can't decide God's nature based upon the good or bad things that happen to us. Our situations change. God doesn't. I had a tendency in the past to look for the goodness of God in Jaycee's illnesses. When things were hard for my child, I felt anger that the goodness of God wasn't around. After all, she was suffering. Goodness surely couldn't mean another surgery or illness or diagnosis or problem. Goodness is health and happy times. Right?

If there's a constant to be found in a chaotic life of raising a child who is medically complex, it is this. God is unchanging. He cares. He loves. He is good. "God is good" is not something said to sound Christian. It is a declaration of a belief of God that you must feel and know deeply and profoundly. You must settle this in your heart and your mind, so that when trials come, you won't be taken down the road of questioning God's nature, existence, and love.

When I sing the chorus of a familiar song, "You are good, good, oh," I sing it from my heart. I sing it with passion. I know God is good. I feel it because of what I have walked through on this Earth. Even when things I face seem terrible, the fact remains that God is good.

I hope you know it too!
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Thursday, March 21, 2019

How the Prayers for my Child with Down syndrome Have Changed

March 21st is World Down syndrome day (WDSD). (The date 3/21 is significant because those with Down syndrome have 3 copies of the 21st chromosome.) As another WDSD comes around, I can't help but reflect on how my perspective of Down syndrome has changed over the years, especially when it comes to my prayer life.

When my daughter was diagnosed with Down syndrome at birth, I was shocked. I didn't know it was possible for a 25 year old woman to give birth to a baby with Down syndrome. I never expected Down syndrome or a heart defect to be part of my baby's life.

The diagnosis of Down syndrome was portrayed in a negative light by the medical team in the hospital after Jaycee's birth. The doctor pointed out all the "flaws" on her body that indicated Down syndrome. I was told she would have challenges in motor skills, cognition, and her everyday life. The doctor told me I would be caring for her the rest of my life.

Down syndrome seemed overwhelming. The diagnosis was more than I could take. My thoughts regarding Down syndrome were all negative, and I could barely think of anything else. All of the negativity spilled over into my prayer life when it came to Jaycee.

Early on, I prayed for Jaycee to have a miracle. Specifically, I prayed for her to be healed of the effects typically seen from the extra chromosome. I made a list of the common problems with Down syndrome some of which included: Intellectual disability, low muscle tone, thyroid issues, slow metabolism, vision and hearing problems, and delayed development. I called each of them out in prayer and asked God to intervene miraculously.

I prayed and prayed. As the months went on, Jaycee had her first of two heart surgeries followed by oxygen use at home. She was struggling with feedings and motor development. I was getting discouraged. All the while I poured my heart out to God in prayer, it seemed like God had absolutely nothing to say about Jaycee's Down syndrome and her struggles.

One day as I prayed through the list of needs for Jaycee, I felt God ask me something.
"Are you praying these things for her or you?"
The question stopped me. I started praying for healing early on because I felt God would want her to live without issues based upon many stories of healing in the New Testament.
Jaycee gets a kiss from mom before a surgery. 

However, the question forced me to analyze my motives. Why was I really praying? Was I doing it from a place of love for her or was it something else? I came to the conclusion that I was praying for myself more than her. How much easier would things be if therapy wasn't needed, if specialty physicians weren't involved, if she understood like any other child, if her muscles were strong, if medical bills weren't in our lives, and if medicines weren't part of her daily life? These things would make both of our lives easier. Perhaps, I wasn't praying for Jaycee's sake, but my prayers were actually rooted in selfishness and fear of the future found in my own heart.

As I started to adjust my prayer life, God was still overall silent on the topic of Down syndrome. How did I need to pray for her? What was God's heart on this subject?

One day, several years into my parenting of Jaycee, I felt God speak again. As I was lamenting about some challenge related to Down syndrome, God whispered to my heart, "Down syndrome isn't that big of a deal."

What?! I started to tell God why it was a big deal. It was, after all, making Jaycee's development, education, and independence difficult. There were aspects of her life that were challenging for both of us.

It was then that I really found God's heart toward my daughter. God doesn't value life as we do. He doesn't care if someone is athletic, intelligent, artistic, poetic, or verbal. He isn't bothered when milestones aren't met as typically expected either.

Sure, you may think this is your belief system too, but I believe the system of the world is rooted in us far deeper than we may realize. We all want our kids to achieve "normal" things in life (educationally, in relationships, etc.). When it doesn't seem possible because of a diagnosis, it can be hard to face a reality much different from what we expect.

God looks deeper. He looks at our hearts and our spirits. He viewed Jaycee much differently than anyone. I'm sure God was pleased with her joyful and loving nature. God must have loved my child's spirit. I am sure that Jaycee's Down syndrome wasn't really impacting her in God's view. The trials on this earth from the extra chromosome were insignificant in the long run. Her heart was right, and that was most important.

When I got a new revelation of Down syndrome, my perception changed as well as my prayers. I embraced all parts of my daughter, accepted her limits in a healthy way, and prayed less selfishly. I didn't see her as a walking list of needs. I had more grace and patience for her difficulties and less frustrations. I asked God for more wisdom to help her through challenges rather than simply praying for them to end.

Years ago, I was almost in panic mode after I heard the words "Down syndrome." I prayed so many prayers, but I never really asked God what He thought about Down syndrome. I wish I would have asked for that clarity immediately. It would have given me a sense of peace and purpose for both of our lives. Perhaps, I would have been able to see past the challenges and just see her. I wasted so much time focusing on the wrong things. Looking back, I'm embarrassed by those initial emotions, thoughts, and prayers regarding my child's diagnosis. I can be thankful that I have grown as a person and a mother.

In celebration of WDSD, I ask that each of you consider your viewpoint of those with Down syndrome, specifically when it comes to prayer. Do you see them as only someone in need of prayer? Can you look deeper and see the person that God sees?
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Tuesday, March 5, 2019

What Age 13 Is Like for My Daughter with Down Syndrome

It seems like a few years ago, I was cuddling my small baby in her Noah's Ark themed nursery. It doesn't seem like this baby recently blew out candles on her chocolate cake in celebration of her 13th birthday.

When I held Jaycee in my arms years ago, I often tried to picture what her future would be like. I had many concerns and fears back. Now, I'm living that future. There is plenty of fun and personality in our lives, and fear and concern left years ago.

In true teenage fashion, my daughter has taken an interest in all things feminine. A few makeup supplies can into our house at Christmas. In a short amount of time, she has accumulated 5 tubes of lip stick, 4 eye shadow palates, powder, and blush. We had to carve out makeup application time in our morning routine. I don't wear makeup, so Jaycee has developed this interest on her own.

Similarly, Jaycee has decided she needs her nails painted and looking pretty at all times. She owns dozens of nail polishes and enjoys experimenting with different colors.

Jewelry is another interest of Jaycee's. A few months ago, she cried for a ring while we were shopping in Zales. Before we decided to spend hundreds of dollars on a ring, my husband and I purchased a cheap ring to test her responsibility with it. Jaycee has taken superb care of her now 3 rings and several bracelets. The more bling, the better!

Jaycee likes to carry a purse. She has a compact mirror and lip gloss inside of it. She has a wallet with her own money. Inside her purse, you may also find Peppa Pig or Frozen figures. 

When it comes to fashion, Jaycee loves to shop and pick out her own clothes. This is the child who hated shopping for many years much to my frustration. Now, I can't try on clothes without making sure I have something for her to try on as well. She wears mature looking sweaters that I would love to borrow, but she also has shirts with her favorite Disney characters as well. For the most part, I help her choose her outfits for school, since she doesn't yet understand the importance of dressing for weather conditions.

Like any other teen, Jaycee is interested in the phone. While many teens may be calling their friends, Jaycee will ask to call her cousin Gabby or grandma. Due to her limited verbal speech, Facetime is her primary way of communicating. She can sign or gesture to her family members on the phone on Facetime, and they can understand her much better. Texting or social media isn't an option since reading and spelling are both hard for her.

What about boys? Relationships are typically an interest of teenagers, but I can't tell if this is true for Jaycee. She loves everyone. She wants to innocently kiss and hug girls and boys that she likes. Friends and family members are all recipients of her acts of love. I don't see her interested in boys in a romantic way, but I'm not around her at school. Maybe I'm wrong. 

While many teenagers are asserting and gaining their independence. Jaycee is becoming independent too but in a different way. Jaycee is learning to do things on her own that other teens probably mastered years ago. She can shower by herself for the most part, but she needs help washing her hair. She hasn't yet mastered zippers, buttons, or tying her shoes. Our solution has been to avoid these when possible. Of course, she has the occasional teenage moment of slamming her bedroom door in anger to something I did. This rarely happens, but when it does, I feel like the mom of any other teenager. I secretly love it!

In short, Jaycee is much like any other girl turning 13. I'm excited to see her grow up and have typical teenage interests. Her speech, fine, and gross motor delays make her teenage years a bit different, but she is becoming her own young woman.

Years ago, I had a multitude of worries as I rocked baby Jaycee and fed her a bottle. Now, I sit with Jaycee on the couch holding a bottle of nail polish knowing that our future will be fun and bright.
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