We would like to welcome Leah back to Whimsicle for her second guest post. You might remember Leah from our Getting Baby to Sleep series and her post Being Baby Wise-ish. You can find more of Leah on her blog: leahkoch.blogspot.com.
Hi, my name is Leah and my daughter has a disability.
For any parent with a child who has a disability, they can understand that those words do not come easy and can also understand why it took me months of pain and tears before I could state them boldly. However, until I learned to say it, I could not be the parent that my precious daughter needed me to be. There is a story that someone shared with me called “Welcome to Holland” by Emily Perl Kingsley. In that metaphoric tale, you read of a journey intended for the beautiful country of Italy. Instead, you find that you did not end up in Italy as you prepared and planned, but rather find yourself in the foreign country of Holland. The lesson learned at the end is that it is okay to mourn for the child you expected and did not receive. Through that process you can appreciate and embrace the wonderful child you did birth. I highly encourage you read the whole poem, but do so with a tissue.
No one ever expects to have a child with any type of disability, whether congenital or developed over time. No parent who has a typical child can quite understand what this experience is like for us. I had no idea that anything was wrong with my sweet girl in utero. Nothing presented on ultrasound and nothing was immediately obvious to the doctors when she was born. But I knew. From the moment I saw her, I knew something wasn’t right. That’s not to say I wasn’t immediately in love; I just knew something was wrong.
They were little things: a tongue-tie, a failed newborn hearing screening, funny-looking feet. Doctors and nurses ensured me that there was nothing to worry about and it seemed like so many people handled my concerns nonchalantly. I persisted and over time we had identified piece after piece as the puzzle started to come together. I now know that she has Aural Atresia (her ear canals did not form correctly and close before reaching the inner ear) and mixed conductive hearing loss (basically her ear canals won’t conduct sound waves to the ear drum), a very delicate digestive system (which requires infant Prilosec and protein free formula), small stature and limited muscle tone, vertical talus in both feet (her ankle bones formed perpendicular to her feet instead of parallel so her feet flipped up to her shins), and now suspected Nystagmus (eye shaking, typically accompanied with head positioning so she looks at us out of the side of her eyes). We are finally able to pursue genetic testing to know more and find the answers we so desperately seek.
If there is any advice or encouragement I could offer a mother of a child with a disability, it would be:
- It’s okay to feel anger, frustration, regret, and confusion about having a child with disabilities. Once you can admit those feelings, it is much easier to release them and move on.
- Don’t ignore your instincts as a parent. If you think something is wrong, persist in getting your child the help they need. You are their first and most aggressive advocate.
- It is a long, long journey that may at many times be expensive, tiring, heartbreaking, and unexpected. The life you anticipated having is GONE, the child you thought you were going to have does not exist; embrace what is in front of you.
- There are many people who are going through similar experiences and there are many resources available for your and your child. Find those people, find those resources. I am part of two different facebook communities (vertical talus and 18q deletion, they are both so encouraging and helpful).
- Stop comparing your child with disabilities to other people’s children or even other children of your own. They will likely not meet the same milestones and you will do your child a huge disservice by constantly expecting him or her to achieve the same as other children who have the physical and mental capabilities that your child does not.
- Don’t feel sorry for your child and do not lower your expectations of what they can do simply because they may have to work harder, take longer, or need more help to achieve it.