15 Years Married: Part Survivor, Part Fear Factor, Part Reality Show

May 17th marked 15 years of marriage for my husband and I. (Go ahead and applaud if you want.)

The day we stood in a church to say our wedding vows, neither of us knew what life had in store for us. We had dreams and hopes for the future like anyone else. Most of these were ordinary ones- securing good jobs, owning a home, taking vacations, having children, and always getting along. We never pictured all the good and challenging things that would actually occur.

For the past 12 years of our marriage, we have navigated a world we never anticipated. When Jaycee was born and subsequently diagnosed with Down syndrome and a heart defect, we found ourselves in a new place in our lives individually and together. For 12 years, we have had to make difficult decisions about her medical care, therapy, and schooling. We've parented a child through surgeries, multiple hospital admissions, medical tests, and daily home medical interventions.

At times, I have felt like my husband and I have been on some strange combination of Survivor and Fear Factor. We've been in a hospital room for days and weeks at a time, sometimes in the Intensive Care Unit, wondering what her outcome would be. Her illnesses dictated our lives, and no matter how much we all wished to be home, we had to wait for her to get better. We have rushed her to the emergency room for true medical emergencies. We've seen her go through lots of scary tests, pokes, and interventions. We've genuinely worried for her life and future. It's challenged us emotionally, physically, and spiritually.

We've experienced cliff hanger moments in the hospital like you see on reality television shows. Sometimes, it was a doctor giving us a worst case scenario which thankfully never happened but caused great trepidation at the time. Other times, things projected to occur did-both bad and good.

I have jokingly told others before: "If you want to know what your marriage is made of, have your child hospitalized in the ICU. Have a doctor tell you some frightening things about your child. Feel an enourmous amount of stress and worry from everything happening. All the while, you are sleep deprived and coping in less than ideal living conditions (public showers, hospital food, little personal belongings). Then add in to the fact that you and your spouse are sharing a small hospital room with your child for most of a 24 hour period. You'll find out what your marriage is made!!"

I say that as a joke, but it is true. The hospital situations have brought out the best and worst in our relationship. We found out pretty quickly that stress contributes to some arguments and attitudes. We try to give ourselves grace in these situations and know that we both may say and do things under the strain and pressure of our situation. We know we both have the same end goals and that plan involves each other- even if we snap at each other after being up all night with our daughter in ICU.

Whatever contest you want to say that our marriage has won or survived, we know enough to celebrate the victory. Last year, we started dreaming of a trip for our 15 year anniversary. For our 10 year anniversary, we went back to the place where we honeymooned, Pigeon Forge in Tennessee. This time, we wanted to go some place new. With Jaycee's health issues, we decided to wait closer to our anniversary to plan the trip.

Then the illnesses started. She spent over a week in the hospital around Thanksgiving. Weeks later, she landed back in the hospital in January. She went home on oxygen at night and was still recovering when she went back into the hospital again in late January. She was sick the entire month of January either at the hospital or home. Things were a bit rough even into February, but then things started looking up.

In mid-April, we bravely purchased plane tickets to Niagara Falls and planned our trip just 4 weeks away. Then Jaycee went back to the hospital for a week. During the hospital stay, I wondered how long it would last and what sort of shape she would be in when we went home. I doubted the trip would happen. We can always reschedule, I told myself with a sigh. Thankfully, Jaycee made a quick recovery, so we could keep our plans. The kids went to my mom's for 4 nights while we were on our trip. Four nights may seem like a short trip, but we were grateful for any amount of time away.

On the trip, we had adult meals. I went outside my comfort zone and tried meat with chimichurri sauce. I'm not an adventurous eater. My husband was proud. We had some regular meals too like a good, well done cheeseburger.

Hanger Steak with Chimichurri Sauce...So fancy! 

We explored the Niagara Falls National Park and some visited other fun sites in the area. It was a beautiful place and a wonderful trip. We missed our kids, but we did FaceTime every night. The first night, Jaycee asked, "Mom work?" Nope, I'm on vacation girl! 

We loved every minute of our trip. We know we have overcome so much together, and we know it's important to take a few days as a couple to recognize that. 

When our daughter's diagnoses were given, I remember fearing what would happen with our marriage. We've stayed strong, and we've stayed together. We've haven't been perfect, but we have made it through tons of crazy scenarios that would have been great made-for-tv moments. Yet, this is real life. I'm glad we still choose each other and can work together through everything. 

Now...where should we go in 5 years? 

What My Son and I Have in Common (Besides the Obvious)

"When you were a kid, did you go to the sibling play room?" 

"No." I tell my son as we sit in the hospital cafeteria eating lunch. I had just picked him up from the playroom after I left his sister's ICU room. 

"I never had a reason to visit the hospital when I was a child," I continue. 

"You never saw your brother in the hospital?" 

And that's the moment I knew that my son and I were different yet the same. 

My son's upbringing has been strangely unique. He has grown up watching his sister take medications, wear oxygen from time to time, and have various interventions at home. Elijah has visited his sister, Jaycee, in the hospital several times a year since he was a toddler. It is the only life he's known, and it's hard for him to understand a life different than his.

Elijah visiting Jaycee in the hospital a few years ago.

"You do realize that most people don't visit their brothers or sisters in the hospital, right?"

Elijah sat perplexed for a moment. "Why not?" 

"Most kids aren't sick like your sister," I try to explain. "My brother was never in the hospital as a kid, so I never needed to visit him."

He still sat puzzled.

"Most kids you know have probably never had their brother or sister in the hospital. Most kids don't have a sibling like your sister. She was born with really crummy lungs and illnesses are really hard on her," I went on to explain.

He seemed satisfied with that response, but I knew that he couldn't really wrap his mind around what I was saying. This has been his life for all of his life. He's become acquainted with things most children never encounter.

Similarly, my life as a mother has had only this reality as well. I have trouble comprehending the lives of other moms. I only know what I know: hospital admissions, surgeries, specialty appointments, and health scares with my daughter. I have no idea how to relate to moms discussing sports for their children or typical childhood events. My motherhood experience has not followed the norm; neither has my son's childhood.

In this, my son and I have something in common. Our lives are shaped by our experiences with Jaycee. He finds it hard to imagine a life with a healthy sibling. I find it hard to imagine a life with two healthy children. I see him having a hard time relating to other children his age. I have a difficult time relating to moms of children without special or medical needs. We both have lives that few people can relate to, and it's made us both a bit quiet in large groups.

Still, I see another commonality. We both get anxious in our own ways when we see Jaycee coming down with a cold virus.

"She won't need to go to the hospital, will she?" Elijah asks this question hoping to have his mind eased.

"She's fine right now. I'll keep watching her," I say to him. I know better than to give him false assurances and make promises about a situation I can't control.

With my husband away at work, the two of us wait the illness out hoping to treat it at home. He watches me dose out medicines and run machines. He asks me about her numbers, and I try to be calm when things aren't going well. I can see the worry in his little face at times; I know it must be on mine too. Yet, we both find a way to keep going. When it all finally settles down and Jaycee is healthy again, my son and I have something else in common.

We know how to appreciate those good times. We are grateful for the chance to go play outside, keep plans we actually make, and leave the house when Jaycee's breathing is back to normal. We know how to enjoy simple things, and the value of health. He appreciates that even at his young age.

My son and I will carry on. We will try our best to relate to other people who don't experience what we do. We know that we understand a piece of each other that no one else will, and in some ways, that makes it a little easier. 

Mother's Day & What I Lack

Last week, I had a Mother's Day post on Key Ministry's site. If you missed it, have a read:

I have a small struggle on Mother’s Day, and it’s for a silly reason.

A few years ago, my son developed a skill that my daughter has not, and this is what trips me up ever so briefly. When a holiday or my birthday comes around, my eight-year-old son thinks of me. He panics if my husband didn’t have time to take him shopping for a gift for me. He hunts around in his room to find special treasures of his to give to me to express his love. I’ve received a Santa hat, a teddy bear, and sea shells as gifts from such occasions. They are tucked away in my bedroom, and I think about him when I see these items.

Keep Reading...... Click Here: Why I Will Lack Nothing This Mother's Day

Being a Mom in the Hospital

A mom finds herself in many situations. Most of which are expected with the title. Grocery store speed shopping is a favorite of mine. Googling answers for my son’s homework is becoming a more frequent activity at my house. Coming up with creative ways to bribe my daughter to comply with a simple request-that’s fun too. But, these are generally all expected as a mom.

To some extent, a mom can anticipate having some interactions with their child in the medical world. Well check-ups with a doctor and vaccines aren’t always fun, but they are a necessary part of life that most choose to do. Illnesses happen too. Dosing out medications and caring for a sick child is a hard part of being a mother, but it is temporary thankfully.  

But then there are women like me... We have mothered our children in the hospital for chronic conditions or severe illnesses. It is a situation that no one is prepared for -nor is it something one imagines when dreaming of their baby’s future early on. Yet, you learn to navigate the life you are given, even if it involves your child in the hospital.

Me and Jaycee-Yes, I am super tired from the hospital!

We have just finished up hospital stay 30 something for Jaycee. For those 30+ admissions, my plans- my appointments, work, and sometimes vacations- were canceled. I go where I am most needed, with my daughter to the hospital. Sometimes, I ride in the ambulance with her. Other times, I transport her myself with my van full of equipment like a monitor and oxygen. A couple of times, she went to the hospital in a helicopter as my husband and I sped there in our vehicle trying not to think about what was happening while we were separated.

I have spent as little as a few days in the hospital with Jaycee and as long as 4 weeks. There have been times when Jaycee craves my affection and love. I am happy to be there to kiss booboos and calm a scared and sick child. There have also been times when I have been pushed away. I am sure she wonders why I allow her to be poked and suctioned. Though she is 12, her mental age is more like a child under age 5 in some areas. She doesn’t understand everything that happens to her. Even though I have made visuals specifically for the hospital, supplement my words with sign language, and use simple words, a child who is terrified is hard to reason with. So if she pushes me away, I go across her hospital room in a chair as she wishes. I try not to take it personally and wait for her to receive my love again, which can take minutes or hours.

Being a mom in the hospital is tough. Before I get any farther, I want to clarify that my daughter has it the toughest. She has to endure it all, but this is my perspective as a helpless loved one who is at the mercy of the illness and condition beating my kid up. As Jaycee’s mom, I want her time in the hospital to be short and easy as possible with no setbacks. It is hard to stand by, watch numbers on a monitor, and wait. There is nothing I can do to stop things from getting worse. There is also nothing I can do to help her get better any faster. I must depend on the staff to make good decisions and figure out the right course of treatment. And, yes, I give my opinion when I think it will help.

As Jaycee has gotten older, my jobs in the hospital are pretty simple. Order her meals and help her once they arrive. Help with bathroom breaks and baths. Guide her through movie choices or put on music. Help with dressing and positioning of stuffed animals. I offer hugs and kisses and words of encouragement. I cheer her on when she is reluctant to take her medication. I help her FaceTime her friends and family when she is missing all her buddies. We call her brother every day and check on him. Unfortunately, that is about all I can do for him during our time of separation.  

The hospital is a hard place for a mother. It makes you see things you never wanted to see and be in situations you never knew existed. Some of the hardest things for me have been watching her be bagged, intubated, suctioned, and medically drugged. Looking at her body with PICC lines, central lines, arterial lines, catheters, etc. at different times hasn’t been easy. Some have left scars on her body. Though the time of the illness may be long gone, these remind me of her fight.

I have been called strong, a good mom, amazing, and a few other positive words. I am strong-sometimes good, but not on my own strength. It comes out of me when the situation arises. Sometimes, I think these admissions will break me emotionally. There are times I have wanted to give up, drive home, sleep in my bed for a night, and pretend my little girl didn’t struggle to breathe so often. It is a thought I have for a second. It’s not an option really though. I keep going until she is on her way to recovery and back home again. That’s where we all belong. Still, sometimes I break down frustrated with things I cannot change, fears for my daughter’s future, and from exhaustion that comes from an admission. Even strong moms get worn out.

As we approach Mother’s Day, I want to recognize the many roles of a mother. You never know what motherhood will bring to you and your children, but all life and time is precious. God is gracious to us and equips us with everything we need to help us through the good and the hard times as parents, even if we aren’t always able to see it at the time.

Motherhood doesn't stop in the hospital because there is a little life I helped create sitting in a bed needing me. I'll be there for her. That's what moms are for.

Happy Mother’s Day!

Prayers for My Healthy Child

Last week, I had a piece on Patheos. Take a read, if you missed it:

Sometimes, I leave him in the middle of night to transport his sister to the hospital for an emergency. He knows when this happens I could be gone for a few days or a week or two.

Other times, I am gone an entire day for scheduled specialty appointments for his sister.

There are all sorts of reasons why my son is cared for by other family members a few times a year. Every time it happens, my heart is in two places. I go with the child whose health requires me to be present, but I’m thinking of the child not with me. The child with medical conditions and limited verbal speech obviously needs her mother. Still, there is a son left behind with emotional needs unattended by that same mother.

To Read More, Click the Link: 

A Prayer for My Healthy Child: The One Who is Left Behind