I still remember the morning, 14 years ago, when I knew in my soul something wasn't right with our daughter Lizzy. She was six weeks old and gorgeous. I was enjoying a few lazy moments of cuddling with her in my bed after a feeding.
I'm not sure what made me notice it that day, but as I was talking to her, it struck me that she wasn't looking back at me. That was it, nothing really dramatic. But in the deepest part of my soul, I knew something was wrong.
That morning began what's been a very long, often painful, and extremely frustrating journey attempting to uncover the mysteries of Lizzy's issues and determine what we could do to help her.
Lizzy has had five MRIs, starting at the age of two. Each one shows significant brain damage, but not one doctor has been able to tell us what this actually means for her. The parade of professionals that have seen her include geneticists, neurologists, an otolaryngologist, audiologist, endocrinologist, allergists, immunologists, and even one alternative healing doctor. There has also been a long line of special education teachers, speech therapists, occupational therapists, and physical therapists starting when she was just 18 months old.
All these years later, we still don't have a name for the disorder that wreaks so much havoc on her and the family, but I've learned some invaluable lessons that I want to share with anyone who may look at their child one day and wonder if something is wrong:
- Trust your instincts. It's been my experience that if something feels wrong, it probably is. That doesn't mean your worst nightmare will come true, but you are going to want to act on your feelings. Don't let anyone, no matter how important or well-intentioned, convince you to ignore your gut feeling. You know your child best.
- Research is great, but be very careful, especially in the beginning. I went right to my well worn copy of "What to Expect the First Year" and checked under what my baby should be doing at six weeks. Stick with a small number of mainstream information sources, such as web sites or news publications you trust or a well-respected child development book. In the sea of great information that is out there for parents, there is also a lot of misinformation. You need professional guidance and facts so you can best help your child.
- Act on your feeling ASAP. The sooner you respond to a perceived problem, the quicker you can get your child help. Call your pediatrician or health care provider and make an appointment. Let them know your concerns and get their opinion. If they agree with you, they may recommend a specialist. Or they might suggest waiting a few weeks to see if a developmental milestone is reached. Ask yourself this question: do they take my concerns seriously? It is paramount that your health care professionals respect your concerns and opinions.
- Doctors, specialists, and teachers are only human. They can be wrong. Again, trust your instincts no matter who the professional is or how well-regarded they may be. You can always get a second opinion.
- Remember, you're human too. You may want the professionals to be wrong. It's a delicate balance between trusting your gut and not wanting to accept a painful diagnosis.
- You will need people whose opinion you trust. There may be times when you have to face some tough realities. Or times when a professional will give you a diagnosis that doesn't feel right. You need someone who can help you decide what to do next. I was lucky to have made friends with a few of Lizzy's teachers, therapists, and doctors. I knew they would tell me what they thought, not just what I wanted to hear.
- Parenting is a marathon, not a sprint. If you deal with one stage at a time, you will do yourself a huge favor. This is especially true if your child turns out to have a developmental delay. Enjoy the small victories as well as the big ones. When Lizzy was a toddler it was feared she would never speak. The other day she got in trouble with her teacher for saying, and I quote, "I don't give a f****** damn." It's a strange feeling to be furious and proud of your kid at the same time.
Being a parent isn't easy in the best of circumstances. When a problem arises, it can seem impossible. I'm not a professional. I'm just a mom who is doing her best to get her child the help she needs. You're going to want, and need, to consult your own doctor or healthcare provider. You may learn, like I did, that you and your child are much stronger than you would have ever thought.
This piece was previously published on Kathy's site, My Dishwasher's Possessed!