Being a Mom with a Chronic Illness

 

Being a Mom with a Chronic Illness

Being a mom with a chronic illness isn’t easy.  Nightly you worry that you will let your children down by being too sick to do something the next day. What if you get sick and end up back at the hospital? So many what ifs that you worry about in your own mind.

When I found out I had kidney failure, my biggest fear was that I would leave my children without a mother. My father passed while my mother was pregnant with me. Even now at 38, I wish I had a chance to get to know my dad.

While sitting in the hospital bed for 8 days, I thought about what will happen. Will my kids know how much I love them if something did happen? Would they remember me. (At the time Hayley was 11 and Spencer was 7.) Even now thinking about all this, I have tears fall. I remember the fear I was feeling like it was yesterday.

I remember coming home and the first night telling Mike that I was so afraid and I started to cry. And he said to me, “Don’t worry everything will be okay.” Those words may seem like something everyone says to someone says to someone that has a chronic illness. I know I heard it often between nurses , other family members and even friends. But at that time I needed to hear it. I needed to know that this journey I was going to embark on, was going to be okay. It wasn’t going to be an easy journey but it was going to be one that we were going to ride through as a family.

The kids on our Chicago Trip touring Soldiers Stadium.

The kids on our Chicago Trip touring Soldiers Stadium.

For the 3 1/2 years I was on dialysis, it was okay. We had many bumps as a family. But through it, I learned it was okay to not do something for a day. I may not have had the energy to bake cookies or to do a big day of the outdoors with the kids. When I had the extra energy that was the time that the kids and I would do something fun. Even if it was as simple as going to the park for 2 hours or watching a movie together. I had gone on trips with them to Frankenmuth, Michigan and to Chicago, Illinois. We travelled with my dialysis machine in the back of our van. When the walking got too much, we would relax. The kids fully understood that I needed to rest. I learned those days that even just watching a movie or building some lego buildings with the kids was a way to make memories.

After those 8 days in the hospital, I assumed Spencer being so young didn’t realize how sick I was at the time. About 4 months later he said to me. “You look better. ” I was confused why he said that so I asked him. And he said “Mommy, you looked really sick when you were in the hospital but now you look a lot better.” That’s when I realized that my chronic illness affected the kids and they did know what was happening.

We took a photo of Spencer at “Spencers” in Chicago. We didn’t go in, just took the picture.

When you are a mom with a chronic illness, your children go through it with you. Even though my children didn’t know everything I went through or the struggles I faced. They were there by my side able to help when I needed it. When I was first on dialysis, I was on hemodialysis. When I would come home I would be so drained. Hayley was amazing. She would make me a tea when I got home. This small gesture was something so great. When you are on hemodialysis, you are so weak from it that even making a tea was impossible. (3 months later I was on peritoneal dialysis which didn’t drain me like hemodialysis so I wasn’t so weak after dialysis.) So being a mom, I tried to make them feel special and tried not to worry them.  I tried very hard early on to stay positive and not be depressed about my chronic illness. I can honestly say that only that first day at home was when I was upset by it. Instead, I tried to keep thinking about it could be worse, I could not be here for them. I was literally on my death bed and came back. Just being able to be with them, allowed me not to get in that depressive state. Plus I like to think positive when it comes to being sick because that helps with fighting your battle.

Did I get tired of being sick? Sure! Did I get frustrated that I had yet another trip to the hospital or to my doctor’s office for another test? Of course!  I am human. But I tried not to feel bad that I have this journey. I tried to still remember that I am a wife and mother. That I could do the same as before, I just might have to take more time to do something. So if I planned to have people over for a BBQ, it meant doing a potluck so I didn’t wear myself out too much. The first BBQ after being sick, Mike and I did everything. I laid around for 2 days after. I just couldn’t do anything. My energy level was gone. It is hard to explain that to children. So I learned how to still do things like that without knocking me down for days because that wasn’t fair to the kids either. Hayley’s graduation last summer wore me out because it was a whole day of getting ready and a long night of dinner and speeches. I was tired the next day but it was worth it. I was so proud that she received an award that was given out to those that go above and beyond helping others.

Hayley won an award at her Grade 8 graduation.

Hayley won an award at her Grade 8 graduation.

I have seen parents wondering how will they do what they need to do for their children while struggling with an illness. To them I say, do what you can. If your energy isn’t there to make beds, maybe have the kids make the beds if they are old enough or just leave them unmade. Life doesn’t end because you didn’t make your bed. Don’t be afraid to plan something your children want to do on a day that you do have the energy and the time to do it. Instead why not do a movie day on those days you can’t just gather your strength? Sit around in PJs and colour with the kids. They will remember the time you spend with them over if their bed was made daily everyday.

Mike and I at Soldiers Stadium in Chicago, Illinois. Very windy that day in the Windy City.

Mike and I at Soldiers Stadium in Chicago, Illinois. Very windy that day in the Windy City.

For me, I am just happy I am able to still share in Hayley and Spencer’s special moments. Seeing Hayley go on to high school and seeing Spencer growing up in an independent tween. Watching them travel, spend time with them and making memories. Mike was right when he said “Everything will be okay.” because it has been. It has been more than okay. Being a mom with a chronic illness doesn’t mean you have to miss out on them growing up, it just means we have to learn how to fight through the chronic illness to be there for those special moments.

 

 

 

 

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12 Comments

  1. March 6, 2017 / 6:13 pm
    You are so brave and you are bang on in your observation that you don't have to miss all the memorable and everyday moments with your family. I know this because I also have a chronic illness. The important thing is to be there. They won't look back on their childhood and remember six course dinners and elaborate parties but they will look back and know how special it was that you were there. Monica recently posted...Chocolate Banana BreadMy Profile
    • Diane
      March 6, 2017 / 10:59 pm
      Thank you. I hope if anything they know that my husband and I tried. It was a tough road that we went down. Thankfully, we have a bit of a break with my transplant. So I am trying to make the most of it now.
  2. March 6, 2017 / 6:16 pm
    It is so tough to be a parent and go through all of that. We worry about our kids and having them worry about us makes it tough
    • Diane
      March 6, 2017 / 10:55 pm
      It can be quite tough. But on the plus side your kids and husband do help to make you want to fight harder. If that makes sense.
  3. March 6, 2017 / 6:46 pm
    Great post! I had no idea you had kidney disease ever. These are some good family coping strategies that you communicated. I have not had kidney disease, or been on dialysis but I have Crohn's and I have been in hospital many many times for long periods. The kids do pick up on that. I was extremely fortunate when my Mom was around still and alive and she and my husband always took on the extra with the kids. That was a true blessing. My kids know I still have down days where I work from bed when I feel so awful, but mostly I am well these days. paula schuck recently posted...Spring Forward: Schedule These Six Daylight Savings Time Tasks #ChurchandDwightMy Profile
    • Diane
      March 6, 2017 / 10:36 pm
      Thanks! Any chronic disease seems similar when we are parents, in that we try to balance parenthood with being sick. I still feel guilty that the kids had to go through this but they were troopers. I think the day I had a transplant wasn't just a relief to me and Mike but also to the kids. I still have days where I need to just relax. I am healthier but I still have a need for a down day now and then. Nothing like when I was on dialysis.
  4. March 7, 2017 / 11:18 am
    You're an amazing mama! Wow, so strong and brave, and so caring for your children. It is hard when our children see us suffer and we can't physically be full there for them - however, like you, being present as much as possible and being there for them every day with our love is apparent to them and they don't go without attention and care! You also raise incredibly empathetic and compassionate children, who can relate to others going through tough situations. Keep on, keeping on, you're doing wonderfully!
    • Diane
      March 7, 2017 / 4:48 pm
      Thank you very much for these kind words!
  5. March 7, 2017 / 8:28 pm
    Thank you for sharing your story, I can only imagine how difficult a chronic illness can be. Sometimes being a Mom is hard enough, you are a strong and amazing woman and Mom!
    • Diane
      March 7, 2017 / 11:54 pm
      Thank you. I figure any mom or parent would do the same in my shoes!
  6. Debbie S.
    March 16, 2017 / 11:25 pm
    There is so much you have gone through and yet you always cherished your children. You are so right, if the bed isn't made, no big deal. I think some parents have missed out on quality time with their kids because of busy lives and so many expectations. You cherished the moments that matter. It really is the time spent with your kids coloring and likewise that matter. I wish you all the very best.
  7. Carole D.
    March 16, 2017 / 11:51 pm
    You are so strong and brave. I can't imagine how it would feel like.

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