What I Can't Control

I don’t think I’ve written about this one, but lately the importance of self- care has really been apparent. It’s one of those things that tends to get pushed to the side. There are so many things that seem more important, or at least so many things that are more pressing.

Family, work, and volunteer responsibilities are just a few of the things that take up time and make it difficult to fit self care in. Schedules are packed and when every minute counts it can feel like there truly is no time.

But we HAVE to make the time. It may mean writing it on the calendar, planning in advance with a friend, or even just having an accountability partner who will call you out if you push it aside.

I honestly didn’t give much thought to self care before I really had to. In fall of 2014 I was in significant pain and finally decided to do something about it. At that time my self care came in the form of physical therapy and a major diet change.  Those two things may not seem like self care but they really were. They were big changes I made to make myself better. To make PT work I had to start doing exercises daily. That took discipline and time, but I made sure to carve that time out of my day.

The diet change was to give up gluten. After years of intense stomach pain and no real answers in bloodwork or a colonoscopy, it was a shot in the dark. The pain started to get better almost immediately. I lost weight (a bit too fast, about 30+ pounds over just a few months time), my skin eventually cleared up, and I think getting the gluten out of my diet helped with inflammation which also helped with the pain in my body.

Those changes together made an incredible difference in my life. Getting the pain under control was the key to being able to be more active. Being more active made me feel better. Feeling better gave me a better outlook on life.

Then in 2016 Gabe died and the exercise came to a grinding halt. My mind shifted from self care to survival. My short term memory just about disappeared. I had no desire to go to the grocery store and feeding my family was a huge task. I honestly don’t remember much of the first months and I don’t really know how I got through. I was on autopilot. When you’re on autopilot you don’t think about self care.

Eventually the fog lifted a bit. With the help of a couple friends I started walking, eventually able to walk 3-4 miles. I also got back on my exercise bike. I got pedicures occasionally, and my frequent visits to the cemetery were also a form of self care for me- driving in the car was time to think and sitting next to Gabe’s grave helped me clear my head and respect the need to cry, journal, and just let my grief wash over me.

Over the years I have realized that for me exercise is critical. When I am stressed it eases that stress. When I’m angry it calms me down. When I’m sad it often boosts my mood. The hard part is that when you are feeling those negative things it’s often not the first thing that comes to mind to ease those feelings!

One key thing about self care is that it can feel selfish. But the truth is if we neglect ourselves and our needs we are less capable of handling the responsibilities of daily life. So it truly is critical!

Remember to care for yourself- in grief or any other stressful situation. If you have suggestions for self care feel free to comment! You never know who may benefit by reading your suggestion.

Thanks for reading!

 

 

Ah, 2019. It’s been a year. Quite a year. A year with change and adjustment. I was actually dreading Christmas this year. I wasn’t looking forward to it at all. I used to love Christmas. After Gabe’s death, though, that changed. Christmas became a time of survival. Getting through with someone missing. It was painful, because Gabe LOVED Christmas so much. He had so much excitement and having him gone changed everything.

Over the past few days though I’ve realized that I have Christmas spirit again. I’m not sure why this year of all years, but it’s back. And I love it. I can now enjoy Christmas carols again. Opening Christmas cards brings joy. Decorating the tree wasn’t the difficult thing I thought it would be, and I love sitting in the living room with the tree lit up.

I write this today because I’m honestly just happy that I am in this place, this place of being able to survive through very difficult things and not only be standing but truly thriving. It’s a gift to be able to look back on something difficult and realize that it hasn’t ruined me- it’s made me stronger.

So to all who are not feeling the Christmas spirit this year, for whatever reason, please remember that where you are now is not where you will always be. I’m not saying that you will ever get over what that difficult things is, but you will learn how to carry it and still be able to enjoy life, and Christmas, and whatever else is hard right now. Feel what you feel, honor your grief, and allow your heart to heal. It takes time but it’s not impossible!

As we go through life we face hard things. Sometimes really hard things. March 27, 2001 was the beginning of one of those hard things. My adorable redheaded baby was one week old and had just been diagnosed with a heart defect, and not a minor one. He was diagnosed with something called Truncus Arteriosus. In short his pulmonary artery and aorta never separated into the two distinct vessels that they should have separated into. The words of the cardiologist were “your baby’s heart is very sick”. I learned that he would need open heart surgery quickly, preferably within 2 weeks. At 15 days he went through that first LONG surgery and did great, but I was tossed into a very unfamiliar medical world.

I always loved medical things (Rescue 911 was one of my favorite shows as a child!) but this was a different level medical learning. I had to take Gabe to various specialists (cardiology, gastroenterology, pulmonology, neurology), and eventually he also had Speech Therapy and Occupational Therapy. Gabe was on several medications, some of which had to be carefully prepared in bottles as Zantac syrup was mint flavored and mint is really not a popular flavor for babies! A few months after being on Zantac, Gabe was diagnosed with aspiration, which had likely caused and/or complicated the issues that pulmonology was dealing with. The remedy for aspiration was to thicken his feeds. I would grind up rice cereal and combine it with formula to a honey consistency. The breathing issues improved some but he still needed regular breathing treatments, sometimes day and night. At times it was overwhelming. Keeping track of the specialists and the care was a huge responsibility and much of it fell on me as the part time working mom.

What I learned through those struggles though was just how much I loved medical things and health care. I learned about Gabe’s conditions easily and was confident in health care settings. I knew I may end up in health care one day but couldn’t exactly see how or where I would fit.

Last fall I took my first step into healthcare, volunteering in a PT clinic. I loved it. I loved the patient interaction and I loved learning about the patients medical struggles. In the spring I took medical terminology and did great- I ended the semester with a grade of over 100. This summer I started looking for a full time job. Most of the available jobs were not interesting to me. I didn’t want to find a job only to have to change again soon.

I applied for a job in health care in a great department and didn’t get it. I was pretty discouraged, but a couple of weeks later that same department called me about a position that involved assisting people with chronic and complex conditions. The goal is to help them avoid readmission to the hospital. The job description seemed like something I would love. I wasn’t sure, though, if I had enough experience. Most of my experience is in child care. I gave that interview my all and was confident. I clicked with the team and shared that although my resume doesn’t reflect my experience with health care, my life experience does. I shared a bit about Gabe and his struggles and the level of care coordination he required. They said “That’s what we do!”

I was called back to shadow for a few hours one day and waited anxiously for a call, and it came. I was offered the job with a very large employer. It’s full time with wonderful benefits and it is perfectly timed now that my boys are older. This week I started learning about the department and the care team. Next week I will start in my role, working closely with an RN and patients, doing home visits and helping to keep people healthy.

As I look at this amazing opportunity I can’t help but be thankful for my sweet child and his medically complex life. He had so many struggles and challenges but he rose above them, often with a smile on his face. I learned so much caring for his needs. I am also sure he has given me strength. That strength showed up after he died as I embarked on the journey of life without him, and it is here now as I start this new chapter of life. Gabe’s spirit is always here and he would be so proud. Tomorrow I will spend much of the day with a social worker in the ER. It is the same ER where Gabe was brought and where I saw the heroic efforts to try to save him. I anticipate it may be difficult, but hopefully I’ll have a bit of extra strength with me from my beautiful heart kid.

“God won’t give you more than you can handle”. I think we’ve all heard that said, either to us during a hardship or to others. It’s one of those phrases that people think is comforting to say, but really just isn’t. And it’s really not quite what the Bible says anyway:

1 Corinthians 10:13
No testing has overtaken you that is not common to everyone. God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.

I am no Biblical scholar or theologian, but the above verse does seem pretty clear to me: God will give you struggles BUT with the struggles He will also provide a way for you to endure them.

By far the biggest struggle of my life was Gabe dying. It hit me like nothing else. It was, and at times is, something that has the power to make my heart race and take my breath away. That grief is so incredibly deep. When a grief like that hits you, you have to find strength. That strength has to come from somewhere. For me it came from many places: my family, friends, and my faith.

Going to Mass was a difficult thing. Our family had gone from 5 people in the pew to 4. It was the same church where my oldest son had laid in a casket, so memories of his funeral came flooding back when we were there. At the sign of Peace I would instantly be taken back to our last Mass with him. It was just a week or so before he died and when I went to give him a hug he gave me a silly smile and pulled back. I hugged him anyway. For many months that memory would take over when I was at church. Going to Mass was also difficult because of Incense. It created such powerful memories of Gabe’s funeral Mass and it felt like a wound was reopened every time it was used- which in the Catholic Church is quite a lot.

Now I find myself in a difficult place again. Not as difficult as Gabe’s death, for sure. But still extremely difficult. And now I am really drawing on my faith. I start the day with the daily readings, and a special blog that helps those in my situation. I’m also attending Mass as much as I possibly can. I have actually gone every day this week. Sitting in the peaceful church, or the church on campus, is amazingly calming. I find that I hear a message each time that really applies to my life. It gives me dedicated time to pray and think, time where I’m forced to slow down my busy life and do something that is immensely helpful to me.

This evening I went to Mass, but I also went to therapy. I’ve been working through some issues related to Gabe’s death and my current hardship. I mentioned that I need to be stronger and like any good therapist mine didn’t let that line go. She pointed out the ways I am strong: doing the tasks I need to each day when I feel like I just can’t. Going to events that I KNOW will be painful, but doing it because it’s important. Getting out there and looking for a job and interviewing when it feels so incredibly daunting. And confronting emotions that are so confusing, scary, and sad rather than just stuffing them down and ignoring them. Those things all show strength.

So where does that tie in to faith? Because without my faith I would never have that strength. Part of the reason I was able to move forward after Gabe’s death was because I KNOW he is in heaven with God, having an amazing time. I would not have had the strength to go on without that beautiful assurance. Without my faith I would have given up long ago. Life is hard. Right now life is really hard. But giving up is not an option. So I continue to go to Mass and get that strength that only comes from God. That strength that pushes me forward on the days when I just want to turn around. I’m so thankful that faith and strength are so beautifully interwoven. I have faith that the strength I am developing will lead to far more beautiful things than I can possibly imagine. And I can’t wait to see what those beautiful things are.

Support. It is such an important thing. Over the years I have been able to seek support from friends and family. But there’s a type of support that doesn’t usually come from those we are close to. It often can’t.

In some situations we need support from those who have been there. Those who can say “I get it”. “I know how it feels”. Sure, they may not know EXACTLY how we feel inside (no one truly can). But those people who have walked the same path as us understand in a different way than others can.

Shortly after Gabe was born I found a great group full of people whose children also had Truncus Arteriosus. It was such a blessing to have this group of people who all understood. Those people could say they had been through it and could offer their wisdom and advice. And perhaps the most important thing was that they could say that despite the hard times their children were still there, still thriving. That encouragement was priceless during some very uncertain times.

Later on when my youngest son was diagnosed with a neurological disorder called a Chiari Malformation, I sought out more support. I found other parents who were able to give advice on tests and specialists. It was wonderful to have that support so I wasn’t entering yet another world of medical complexity alone.

When Gabe died support became even more critical. Death of a child is brutal. Death is brutal, but losing my child who was there every day was a particularly difficult pain. I needed to talk to others who had been through it and were still thriving. I needed to see that although I felt like an emotional basket case I would not always feel like an emotional basket case. I needed reassurance that the hard days wouldn’t always be so hard. Reassurance that the constant sadness would one day be less constant, and reassurance that eventually happiness would come again.

Now I’m going through this new struggle and I’m needing support. Thankfully I have found it in the form of a great counselor, a friend who is going through it, and a face to face support group of others in the same boat. This newest struggle is hard. I had someone by my side to get through the other struggles and that person is no longer here. So I will rely on others- those going through it and those who have been there. Those people will reassure me, just like after Gabe’s death. They will reassure me that one day the hard days won’t be so hard, the constant sadness will one day be less constant, and that eventually happiness will come again.

As time has steadily moved on since Gabe’s death I have noticed that certain things don’t trigger my grief like they used to. The most recent realization was on Wednesday evening, with incense.

I went to Mass and adoration and there was incense. Incense plays a big role in Catholic masses and on holy days. It is also burned at funeral masses. I very vividly remember sitting in the front row at church as the priest swung the thurible (the name for the incense burner) over Gabe’s casket. The symbolization was of Gabe’s soul going up to heaven. I remember the lighting of the church at that moment and the reality of what that meant. It hurt.

Needless to say after his funeral Mass incense was painful for me. Almost every time it was used I felt sadness. Sometimes my heart would pound before I would even realize what was happening- it was such a strong trigger. At some point, I guess, I adjusted to it. It stopped being a trigger. As I sat in my pew on Wednesday night I was completely fine with the incense.

I think this shows progress. It’s been almost 3 and 1/2 years so it’s taken a while but it was a gradual desensitization that I’m so thankful for. It truly does take time. I know there are other things that  will continue to be triggers for a long time, but I’m very thankful that this one beautiful thing is now beautiful again.

 

**The picture above is at the Easter Vigil on March 26, 2016. Gabe received his First Holy Communion in the Catholic Church that night, it was 6 days after his 15th birthday and 13 days before he died. The picture below is a cross that was cut out from his casket. It sat right on the top, and we were given the cross to keep. The casket was a beautiful wooden casket made by the Trappist monks, given to us as they do for children who die.

What I Can’t Control- I chose the name of this blog very specifically, from lyrics of a Matt Hammit song that I identify with (Why this blog?). When Gabe died there was this gigantic piece of life that I couldn’t control. In the early days of the loss of someone so significant, the grief takes over. It truly is all you can think about. At times it literally takes your breath away. For several months I would have episodes of heaving sobs where I would have trouble catching my breath. Nothing I have ever been through even comes close to that. That deep grief is absolutely uncontrollable. You can try to control it, but it just comes out in other ways- fatigue, pain, depression, and so many other ways.

As time progresses it changes shape. By time I mean years, not weeks or months. Eventually it becomes almost comfortable, that grief. You carry it around with you. There are times it emerges but it’s not as severe and it’s not overpowering. I have been carrying this grief around for just under 3 and 1/2 years. My grief and I fell into a rhythm. Gabe’s presence kind of sat in my heart. It felt comfortable. He was still so far away but also felt accessible.

Lately though, that grief has changed again. I find myself in a position where I am in need of a full time job, among other things. A new What I Can’t Control is here. Life is shifting again and with that shift my grief is shifting as well. I have found that Gabe is distant. It’s almost like I have no room to process my grief anymore, like he’s getting squeezed out of my heart. It is painful. He’s feeling more distant and it is extremely uncomfortable. My hope is that as things settle down and my new situation works itself out I will once again have more room to hold him in my heart.

As I work through these changes and eventually disclose what this new situation is my blog may take on a slightly different focus. This blog will evolve, just like my grief. My faith is still strong, and I have so much support from friends. I’ve been through the absolute worst. I can get through this thing too.

 

 

You go through something hard. That should be it right? When something awful happens like the death of an immediate family member, or a horrible diagnosis, or any number of awful life events- that should be it! That difficult event should be your quota. I remember thinking shortly after Gabe died that his death was my hard thing. I would grow and recover and that would be it.

Unfortunately that’s not how life works. Soon after Gabe died life kicked back into gear, tossing some struggles at our family with an employment situation that caused immense stress. And then there was just day to day living that was difficult and felt impossible at times.

And now there’s another situation that I can’t share about but is extremely difficult. It seems so unfair. It seems like I have been handed too much. But you know what? I have been through the worst. So that huge, awful thing that happened on April 8 2016 has prepared me for this. I made it through the deepest grief possible and I’m still standing. I didn’t think I could survive it but I did. I can look back and see that although I walked through the deepest sorrow I am still here.  As awful as the place I am standing now feels, I KNOW that I can overcome this obstacle as well. I don’t want this obstacle, I’d love to just wave it away. But I can’t.

So now I stand, finding the need to recreate myself and figure out who I am and what I want. And hoping that maybe THIS event will fill my hard times quota. I know in reality that it won’t, but hopefully it will count for at least a little while!

My boys LOVED the name. Let me tell you 😉 . Several months ago I started planning a family trip and this is the name I came up with. I didn’t get shirts made (they never would have gone for THAT!), but I did refer to our trip as Zootour. Just seemed catchy!

You’re probably wondering what the heck I’m talking about. Those of you on Facebook saw the many pictures, but most people don’t know the significance behind it.

As I wrote about in my last post (Graduation…we survived), June 8 was significant. It was the day Gabe should have graduated. He should have been sitting there in his cap and gown with his friends- but he wasn’t. The awful thing called Congenital Heart Disease stole that milestone and all the others. So we knew graduation would be a tough thing and we knew we would need something good after that tough thing.

We also knew we needed a vacation. Our family has been stressed. Continuing on with a child missing is HARD. It’s not something that’s just hard for the first year, or the first two years. It’s something that ebbs and flows and sometimes out of the blue it just seems even harder. There is no rhyme or reason to the hard. It makes work hard. It makes life decisions hard. It makes family life hard.

Before Gabe died we took few vacations. We really only had one big one, just us- and it was his Make A Wish trip. I think most people don’t realize it, but when your child has a chronic, life threatening illness vacations are not always a priority. There isn’t much money for vacations, and earned vacation time at work is limited. We had 2 children with complex medical issues, so there were twice as many what ifs and twice as many medical bills.

 

After Gabe died we took 2 vacations. One was 2 months after- a desperate escape to Tennessee that I think was more about escaping our reality than spending time together. It was actually terribly excruciating, arriving in the cabin with one missing and not having him there to share his excitement for everything as he always did. At the end of that year we took a small trip to Williamsburg right before Christmas, to keep busy in the days leading up to what we knew would be an extremely difficult time. That was slightly less painful but really still not a vacation.

So this year we decided we needed a vacation. We needed it for this family that has been through so much and is still here. Early this year I started planning and narrowed down where we would go. Why zoos? Because they are fun! And for me it was also about something Gabe would have loved. Gabe never forgot the name of an animal he met and I’m sure he’s surrounded by animals in heaven. I felt like visiting zoos would be a great way to still incorporate him into our vacation.

We left on June 9, which ironically was the same day that he had surgery in 2014. So it seemed fitting. Right before we left though I went through the house to make sure everything was turned off and couldn’t fight the tears. Because I don’t think any family trip will ever feel right again. Sure we will have fun. But it will never feel right. Because he should be here.

During the course of the trip we drove over 1,000 miles and visited 3 cities and 3 zoos. We fit in stops at the Indianapolis Motor Speedway and the Rhythm Discovery Center in Indianapolis (it’s a percussion museum and it’s great!). The zoos we toured were Cincinnati, Indianapolis, and Columbus. Our hotel rooms got progressively smaller unfortunately but the trip was great. There was little complaining, not much fighting, and I really think we all enjoyed ourselves. Our favorite was Cincinnati with Columbus as a close second. We saw so many animals. Since Gabe loved animals so much he would have loved it. We often talked about what we thought he would have liked,  so it was very bittersweet.

We’ll keep moving forward. We’ll keep remembering that amazing spunky boy who overcame some really hard things. And we’ll try to use that spirit to help us overcome our really hard things. But I know that sometimes no matter the fun and joy, it will also sting.

Some pictures from our vacation:

Cincinnati:

 

Indianapolis:

 

Columbus:

 

As you can see we had lots of fun, but by the end the boys were ready to go home. One more picture from the percussion museum. We miss you, Gabe!