A Mother’s Worry

A glimpse into a life with anxiety

During my pregnancy with my second child, it was confirmed that she had Multi-Cystic Dysplastic Kidney disease. She had so many cysts in her left kidney that there was zero functioning tissue in it at all. Our daughter would be born with only one working kidney and the possibility of the cysts spreading to her healthy kidney. This could lead to her needing a transplant at a very young age or having possible urine reflux, consistent UTI`s, and kidney failure later in life.

I had brought my 5-year-old son to the appointment thinking it was a regular check-up and I completely broke down hearing the doctor tell me the news. I began to cry and hyperventilate, overwhelmed with sadness and anxiety. I was trying to hold it together for my son. My doctor told me to “Suck it up. We don’t know what we are dealing with until she is out.” It was a terrible thing to not know anything more for the remainder of the pregnancy. My doctor gave us very little information. We had no idea what to expect. Reading stories of MCDK online made me think the worst about what could happen.

I buried myself in my house for weeks. I would cry every time I remembered the diagnoses. It was horrible. I had to put on a smile for my son because the last thing I wanted was him to feel my pain. I also knew he would tell me to pray for God to heal her. He has such a strong, child-like faith. I didn’t want to disappoint him. I didn’t want him to know that God doesn’t always heal. I didn’t want him to have less faith in God like I was experiencing. It was a horrible thing to think. We should have faith that miracles can happen at anytime, but when you are actually thrown into that position, it is so very hard to believe. It took all my energy just to get him ready for school and not cry, or to spend time with him and try to not focus on the pain. The sadness and anxiety took all my strength away. 

It made me feel less of a mother, a wife, a friend. I felt like I could not make a healthy child for my husband. I was anxious all the time. I would worry about everything I ate or drank, thinking it would make her worse. I would hear about all the expectant babies at church or work and yell at God, asking Him why He gave me the sick child. Why was I the one out of all these expectant mothers to be given a child with illnesses. I would try to bargain with God, explaining to him how I would serve people with disabilities my whole life if He gave me a healthy child so I could have the time, energy and money to serve others.

I was permanently anxious which made me very edgy. I would tell myself to relax knowing it was bad for the baby but I could not control the anxiety. It was taking over my life. I did not have much desire to go to church other than for my family. I didn’t want to hear about all the great things God was doing in other peoples lives and feel left out. It was hard to accept the idea of God’s love when I felt like he had dealt me such a difficult blow to challenge me. I didn’t want the challenge, therefore at this time I didn’t really want Him. My parents had so much faith that God would heal her kidney, that every time I tried to explain my worry they would cut me off and tell me to go have faith. It was so hard that I began to tell everyone I had faith He would heal her, only because I did not want them to know I actually didn’t. 

My husband was a major stronghold during this time. I always expected I would be the one to have understanding for illnesses because of my job, but it was he who had healthy direction and focus, supporting and assisting me wherever I needed it. He reminded me we could handle anything and to trust God like I always tell him to do. If it hadn’t been for his support and knowing I needed to be a good mom for my son I could have easily spiralled into a major depression.

When I finally gave birth, we discovered she had only one working kidney but everything else was completely healthy. It was a relief. I still would feel a bit anxious when people would ask about her kidney or why it occurred (causes are unknown) feeling guilty that it was my fault. But overall I did trust that God would watch over us and only give us what we can handle.

A few weeks after our daughter’s birth, we noticed trouble with her breathing and eating. After many many over-night stays at the hospital and way too many tests, they discovered she had laryngomalachia. It can be caused by having immature lungs which creates a floppy larynx. The walls of her lungs would collapse with every breathe causing a squeak noise, wheezing and what sounds like difficulty breathing. Knowing that the lungs are the last thing to develop in the womb, I felt guilty and anxious for her being induced 3 weeks early to check on her kidneys which were no issue at this point. I felt like we caused the laryngo. I would be up all night listening to her squeak, making sure she was breathing, afraid her collapsed lungs would not bounce back. We were told they always would and she would grow out of it before her first birthday. I was just supposed to get used to hearing my baby struggle for breathe. 

The laryngo caused her to have GERD (reflux/heartburn) which made her refuse food and eventually loose weight at six weeks old. The breastfeeding was a depressing issue on its own because I really wanted it to be successful. Since her laryngo made breathing and coordination hard for her, she was constantly choking. The GERD made it painful. She became fearful of my breasts and refused them. My in-laws put a lot of guilt on me for failing with breastfeeding. All the other great moms at our church group were breastfeeding so well, having such big, healthy babies. Here I was with my formula and bottle; my tiny, non-growing baby; feeling like a failure. I’m sure the complete lack of sleep skewed my perceptions too.

It may seem so silly to get depressed and anxious about these things. They truly were not my fault. But to a mom, we take everything personally. We take all the guilt of family issues and put it entirely on ourselves. My husband would constantly remind me to not get so anxious, but I would worry and worry. Then I would worry that my worrying made me an unhappy person and how I’m not a fun mom anymore. I would get mad at myself for allowing my emotions to take control and not being better for my family, which just made me feel worse.

I would say it has only been recently that I have been starting to feel myself again. The continuous support of friends and of my husband truly helped me. He is such a hard worker for his family and without his help I am sure I would have crashed at some point. Continuing to trust in God and recognizing life outside this current situation has also helped me battle through.

Recognizing that not everyone dealing with mental issues has this kind of support is important. Knowing what someone is going through or how they are dealing with an issue is important to us as a community. This is why I value this mental awareness week so much.