The first thing that drew me to PsychMamma’s blog was the title! The second was her beautiful photography. I had to know more – and now you can also!
Tell me a little about yourself and your family.
My name is Dawn and I’m a SAHM and wife currently residing in the Midwest. Our daughter, Jenna, is two years old. She was the surprise of our lives when I was in grad school and almost done with my PhD in Clinical Psychology. We didn’t think I could get pregnant due to severe endometriosis and had recently settled into the idea of being childless. Ha! Jenna was born when I was 35 and my husband was 39. Our lives were turned completely upside down and are now filled with lots of wonderful and tiring chaos and joy.
Tell me more about daughter’s disability. Did you know when she was born that she had a disability? If not, how did you feel when you discovered it?
Jenna was born with a birth defect called Triple Intestinal Atresia. This means her small intestine was not fully formed or attached. We found out about her diagnosis while I was pregnant when an ultrasound technician noticed a problem. I remember the fear and panic I felt when it became obvious the tech had found something wrong; I remember tears when they first told us the diagnosis; and I remember a calm and focused preparation with LOTS of learning. I read everything I could find. We were so glad to at least be partially prepared before her arrival.
After she was born, she had surgery at two-days-old to correct her intestinal defect , which left her with half the “normal” length of small intestine. Her primary diagnosis is Short Bowel Syndrome (“Short Gut”). We naively thought she would stay in the hospital a week or two after her surgery and then we would take her home. Her feeding issues became more and more complicated, and, while in the NICU, she developed additional severe lung problems. Her NICU stay grew into three months and the hospital became our home. We’re still lacking an accurate diagnosis for her lung condition. It’s currently listed as Bronchopulmonary Dysplasia (BPD), but she doesn’t actually meet all the criteria for the diagnosis. Her lungs are severely scarred and she has to work very hard to breathe. She’s very susceptible to respiratory illnesses and allergies, and struggles with symptoms of asthma. She’s also diagnosed with “Failure to Thrive” as a result of chronic weight and growth issues.
You blog a lot about your daughter’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about her? What do you personally get out of blogging about her and her issues?
We have so many friends and family who constantly want updates about Jenna that a blog seemed like a good way to keep people informed. I am a total blog “junkie” and get so much from other “mom blogs“, that I started thinking about starting one of my own. I did a lot of thinking about if beforehand and pondered all the issues like privacy and safety for Jenna, and how she will feel about it when she’s older. Ultimately, I decided that there were so many times that I had searched for good blogs with information and support from other special needs mom’s, that I wanted to try to fill a niche.
How has your daughter’s disability affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
Jenna is my only child, so I’m not sure how (or if) her disability affected my parenting other than the obvious extra care steps and medical knowledge that are part of my life by necessity. I do think that being a parent of a child with disabilities has made me much more aware of and empathetic toward what other families with special needs kids are going through. The financial “burden” and insurance hassles have made me much more involved politically in seeking change for our disastrously flawed healthcare system.
What have I done right? Deciding to stay home with her is a decision I’m so glad I made. Switching her to specialists a 20 hour drive away was a hard but wonderfully RIGHT decision. I love her unconditionally until my heart feels like it will burst. I’m more patient than I’ve ever been in my life. I try to be a better person so that I can teach her how to be a better person. I talk to her all the time. I try to slow down and listen. I hope I’m doing more “right” things than “wrong.”
What do I wish I would have done differently? I’m overprotective, which I don’t like because I don’t want to limit her life experiences as a result of MY personal fears. I still need to be more patient. I need to remember to slow down (or stop) to listen more. I wish I wouldn’t have given her some of the vaccinations that we did (that’s a subject for an entire post). I wish I would have done lots of little things differently at the end of almost every day, but I’m guessing that’s not so different from other moms.
What do you want other parents fighting the same fight to know?
Number one: There are other parents out there going through the same things. Even if the circumstances aren’t the same, the frustrations and joys, the stress of daily worry and fear, physical & emotional exhaustion, and all the general & medical experiences put us in a place where we can empathize with and support each other.
Number two: Don’t be afraid to and DON’T WAIT TOO LONG TO ask for help. I found that I pushed and pushed myself because a.) I’m a control freak who thought I was the only one who could do it right or who knew enough about her condition; b.) I didn’t want to “bother” others; and c.) I thought it would be an indication of weakness or inadequate parenting. There are SO many things that friends and family can do to help, even if it’s not part of your child’s care. When they say, “Let me know if there’s anything I can do to help” TAKE THEM UP ON IT! It took me too long to figure out that asking for help isn’t an indication of weakness, but rather an example of responsible parenting. I had a wise mentor and friend from grad school remind me that if I didn’t take care of myself first, I wasn’t going to be in any shape to care for my baby. Amen.
Please visit Dawn at her blog PsychMamma.
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.