The Adventures of Adoption and Parenthood

It took me a long time to figure out that I was a special needs parent. I don't know if it was denial or if I just felt that my kids's collective issues didn't really count because my friends with special needs kids seem to have much more severe needs than mine. But it dawned on me in the last few days that I am a special needs parent. And a certain amount of grief goes along with that. Not for me. It's not a pity party kind of thing. But as you watch your kids list of special needs grow and grow and the list of their medical professionals grow and grow and the daily diary you track of various things grow and grow, you wonder when it will stop. When will they stabilize? When will the list of growing symptoms stop? When will the puzzle begin to come together? How much more pain does my child have to go through? Segunda, as you know if you follow this blog, has Hypophosphatasia, which is a metabolic bone disease. It's progressive. Her symptoms are: Curved long bo

The Cost of Medical Care is many-fold isn't it? It's not just what you shell out of your bank account. It's the hours and hours spent working with billing offices and insurance companies and third party advocates. It's the upset stomach and splitting headache when you take another call from another physician's office asking for another evaluation for your child or your spouse or you and knowing that you have to put on your boxing gloves and head to the mattresses. It's hours and hours and days and days of missed work to shuttle your child, spouse or you to the appointments they have. Our youngest child has two rare bone diseases. One of them affects her metabolic system as well as her bones. This disease is called hypophosphatasia. We have learned about it little by little because it is very rare. Mostly what we have learned has been anecdotal from the amazing patient community who so willingly shares their experiences with the disease and the burgeoning tr