Most of us have felt mom guilt at some time or another, whether we felt like we were more focused on work than our children, or we snapped at them when we didn’t mean to. But we dealt with it and moved on. But what about the mom guilt you feel when your child has a serious illness? How do you deal with it then?
This post is part of My Sweet Home Life’s Overcomers’ series – where we look at women whose lives haven’t turned out quite how they expected.
We feature women who have struggled with abuse, addictions, unexpected loss, and challenging circumstances.
Each of these women have come through their experiences with lessons learned – lessons that can help us all as we navigate this crazy thing called life.
Today we share the story of Jamie and her experience of her baby’s unexpected diagnosis and treatment of a serious medical condition – and the mom guilt she suffered as a result.
Related: Overcoming infertility: My story.
TELL ME ABOUT YOURSELF
My name is Jamie Ruffin. I am a 26-year-old married mom of two. I empower women to have a happy marriage while raising strong kids and finding the time to achieve their personal goals at Living Life As A Wife.
I am originally from the Chicago suburbs, which is where I met my husband, but have lived in three states since September 2015.
My husband, Stuart, is currently serving our country while I stay home with our babies, two-year-old Tobias, and 10-month-old Temperance. We also have our furbabies, the 95 lb yellow lab, Poseidon, and our recent pit bull rescue, Athena.
WHAT WAS LIFE LIKE BEFORE YOUR SON’S DIAGNOSIS?
In January of 2016, my husband and I packed up our house, dog, and almost six-month-old son to move across the country from the northern Midwest to the bay area in California. We moved into our temporary home, knowing we would be there for less than six months while my husband was in training.
On a good day, Stuart would be on base, 45 minutes away, from Sunday night until Friday evening every week. So I received our household goods from the movers alone. And I took Tobias to his six-month well baby check alone.
February 15th, 2017, was the day our lives changed.
I walked into the office of the new pediatrician with a healthy, but underweight six-month-old. Tobias was happy and active. He loved people and smiled all the time. We had even had bloodwork done because of his weight and everything had come back normal. My boy was healthy.
The doctor came in and spent less than five minutes with us before excusing herself. After 10 minutes I began to be annoyed with my wiggly baby. Another 10 and I was getting nervous.
She came in and apologized for the wait. She listened to his chest again for several minutes. Then, she said what I was dreading.
“There’s something wrong with his heart.”
She explained what she could. But it wasn’t much. She had heard a galloping sound from his chest, but she wasn’t sure because his breathing also seemed off. So she’d called the cardiac unit at the children’s hospital to find out what to do.
And they were expecting us there.
She gave me the address for the hospital in San Francisco and I left.
I called Stuart and it went to voicemail. After I left a voicemail, I texted him the same message.
“There’s something wrong with Tobias’ heart and we are going to the children’s hospital.”
He called back 10 minutes later and was already in the car. We drove across two bridges and through a city we had never been to before during rush hour.
Finally we arrived at the hospital where we had to pay to park both our cars. I arrived first, close to an hour ahead of Stuart. I walked in with Tobias. As soon as I said his name a nurse took us out back. She’d been waiting for us.
Tobias was poked and prodded for hours in the ER. He was tired and grumpy after hours being in the car. Eventually, we were admitted to the hospital to let Tobias sleep, with the plan being to continue his tests the following day.
Fast forward 24 hours. The head of the cardiology took his case. After the tests were complete, we took Tobias home and waited for the doctors to evaluate the images and call us with a plan.
The gist was that his mitral valve in his heart hadn’t formed properly. There was extra tissue crowding the valve but they couldn’t tell exactly how much. The area was too small and this was not something they’d ever seen before.
All we knew was that Tobias needed open heart surgery to correct the issue. And he needed it soon.
The following 30 days were a blur. There was so much waiting and so little information. But what made it even more confusing was that Tobias seemed fine. He was laughing and playing, meeting all his milestones. He seemed like a healthy little boy.
But he wasn’t.
His heart was on its way to exploding with one ventricle being more than twice the size of the other.
WHAT WAS THE HARDEST PART OF LEARNING TO COPE WITH YOUR BABY’S DIAGNOSIS?
As if dealing with the uncertainty and lack of information and answers wasn’t enough, I was having an internal struggle.
“His heart didn’t form correctly. He was born that way.”
To me, his mother, that sentence was very direct.
I had not make him correctly.
I had ONE job. To keep my child safe. And I had failed.
I had failed my son.
I had failed my husband.
My body had failed me.
I couldn’t even keep him safe when I was carrying him. And now, I was going to lose him. All because I couldn’t do my one job.
My husband continued to work while we waited for an opening in the surgeon’s schedule. We had no idea how long it would take., and it would have been silly for him to stop training as he’d still need to be at work every day.
So I was home alone with Tobias as usual.
Some nights I would put Tobias to bed and then just sit on the floor. I didn’t cry more than a small tear escaping here and there. Because I knew that if I started, I wouldn’t be able to stop.
So instead, I’d hold my knees and stare blankly trying to think of life without my son. I’d kneel with my head down and pray. I’d ask God how he could put us through this.
Beg him to end it soon because, just this once, he’d given me too much to handle.
I think that it is important to mention at this point, I am not religious, but I do believe that there is something bigger than us. And I believe that we call that thing God. I also believe that we are never given anything that we can’t handle.
But for once I didn’t know if that were true.
I never said anything to anyone about these feelings. Because, to be honest, I was embarrassed.
I am a strong, logical woman. I knew, beyond the shadow of a doubt, that I was not responsible for my son’s heart disease. I had done nothing wrong. I couldn’t have avoided this outcome.
So I said nothing. And I refused to let those feeling take over my life.
Tobias’ surgery was scheduled for exactly 30 days after his diagnosis. And just to add to the madness, the day after we got a surgery date, I found out I was pregnant with our second baby.
On March 15th, 2017, Tobias had his open heart surgery. My husband and I were there, along with Tobias’ grandparents who all flew to California to be there.
I can’t even tell you how long the surgery took. But I can say that it was the longest day of my life.
But when the surgeon finally came out, he smiled. The outcome was better than anyone had ever thought possible.
As I sit here writing this, Tobias is sitting at his picnic table eating cheese crackers. He turned two in July and he is over 18 months post-op. He will be monitored for the rest of his life. Be he is strong. And at least for now, he is healthy.
WHAT LESSONS HAVE YOU LEARNED THROUGH YOUR EXPERIENCE THAT YOU’D LIKE TO SHARE?
- Know that you are not a failure. You are your child’s mom because you are who they NEED. They don’t need the perfect mom from your mommy and me class, or your sister, Suzi. They need YOU. When your child is sick, it is NOT your fault.
- You are in no way responsible for your child’s disease. No one in our family has congenital heart disease. But this disease does not discriminate. You have to understand that having a child that is struggling with an ailment does not mean that you are at fault. These things happen.
- You will NEVER be given anything in life that you can’t handle. Whatever you believe in, you are given this life because you are uniquely made to deal with it, and to come out the other side alive and able to thrive. Always keep this in mind, even in the darkest of times.
- It’s okay to be scared and cry. Don’t hold your emotions in. Be honest not only with your spouse but also, yourself. Talk to other moms. Talk to someone. Even if it is just out loud in the mirror. Let it out.
- Whatever difficult times you go through with your child, remember the good times too. Because without the bad, you wouldn’t appreciate the good. Do I wish that I didn’t have a child with heart disease? Of course, I do.
But would I change anything? Never. Because then I wouldn’t have Tobias. And despite the fact that his favorite activity is screaming at me whenever I look at him, I love that little boy. He is my snuggle bug and my little man. And I have no clue what I would do without him.
- When times get tough, you have to BELIEVE in something. I don’t care if it is God, Santa, Bigfoot, or whatever else it may be. But you need to put your faith in a power greater than you. For me, it was God: that force that is bigger than me and knows better than me about what I can handle.
It was also the surgeon. We were lucky enough to be in a place that has one of the best pediatric cardiothoracic surgeons in the world. So I trusted that us being there was God’s plan. And that the rest was up to that man. So whatever it may be, BELIEVE in it.
- Find other parents who have been through any kind of shock with their kids. At first, I thought no one would get it. Because how many moms did I know who have kids with heart disease? As it turned out that didn’t matter.
Almost exactly one year after the surgery, I had the feeling of failure again. But for a much more common reason.
Tobias was evaluated for speech therapy. And, just in case you have never been through this, let me explain it. A bunch of therapists came to my home and played with Tobias for about 1.5 hours, and then they ranked him. In multiple different areas, they gave him an age.
He was actually 20 months old at the time. But only one category put him at an ability level above a 12-month-old. Most of them were 9-12, with his speech at only six months.
They agreed on the fact that he would get developmental therapy four times a month. We set some goals for him and they left.
And I cried.
I hugged him and apologized for failing him.. again. I told him how sorry I was that I had let this happen. But seriously, they had spent less than two hours with him. And a lot of that time was spent doing paperwork!
The point of this mini-story here is that speech therapy in kids is CRAZY common. And I have talked to TONS of other moms who had the EXACT same feelings. The same feelings I had when he had surgery and I was SURE no one would get it. In reality, a huge portion of the mom population DO get it. Just maybe not everything.
But the feelings of failing your child? I think just about every mom out there has felt it no matter how UNTRUE it is.
So talk to other moms. Because I promise, they get it.
SUMMING UP MY EXPERIENCE OF OVERCOMING MOM GUILT
At the end of it all, it is easy to look back and still feel guilty. But I know that I did nothing wrong.
I told you about finding out I was pregnant days before the surgery. Well, I had to have extra tests and imaging done to screen for heart disease in my daughter. But she is 100% healthy. I CAN make healthy babies. Tobias just needed strong parents who could handle him and all of his issues, and get through it together, coming out stronger on the other side.
So he was given to us.
I AM NOT a failure. And neither are you. If you have to say it every day, then do it.
Write it on a sticky note and put it on your mirror.
Make it the wallpaper on your phone.
Do WHATEVER you need to do to remind yourself. Make yourself believe it. Because, I promise, YOU ARE NOT A FAILURE. And you WILL get through anything.
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