The Adventures of Adoption and Parenthood

Dear Elected Officials: I write to you today with growing concern over the talks of repealing the Affordable Care Act. There is no doubt that some things with the law are not working as intended, but there are many things that are working in the law. A repeal would hurt millions of working Americans financially and medically. Medical care is expensive even with the Affordable Care Act, but a repeal would make it wholly unaffordable for millions. Families would be forced to make the difficult decisions between putting food on the table or purchasing much needed medicines; going to the doctor or paying the rent. Millions will literally risk deteriorating health conditions because they have to keep a roof over their heads and food in their children’s bellies.  Juliana at age 18 months I want to tell you a story about my youngest child. Her name is Juliana and she is 4 years old. My husband and I adopted her from China when she was 20 months old.  At that age, she c...

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...

3:47 a.m. Segunda starts in with the sugar vomits. I grab her and fly out of bed and we make it to the toilet. There she stands hugging the bowl, hair in her face, vomiting up bile. "Mama, my hair all wet." I wiped her face with a wet cloth and held her hair out of her face until she was done. "Sorry, Mama." Do you want to feel small? Listen to your toddler apologize to you for throwing up. It is disconcerting to stand over your 3, almost 4, year old holding her hair like she is a drunken sorority girl in the wee hours of the morning. "Mama, my belly button hurt." "Are you hungry?" Nods head. We headed downstairs where she took baby sips of Glucerna and ate two teensy bites of dry toast. She promptly threw up again. "Mama, want go up tayahs." Husband laid out a beach towel on the bed just in case. She threw up one more time in the toilet and then slept for an hour and a half. Meanwhile, I laid in bed and cried and cried an...

There are advantages to waiting to have kids until you are older. You can afford all of the lessons that they want. You can go on vacation. You can contribute to your 401(k). And if you're really lucky, you can save for your kids to go to college. Before I launch into the downsides, I have to apologize for all of this. I feel guilty even having problems with what is going on in the world and in particularly the US. It's appalling. So, I'm sorry. But here goes ... Having kids when you are older means that you go through perimenopause when your youngest child is a toddler. Having a threenager and a menopausal woman in the house at the same time is a recipe for disaster. My particular threenager is VERY destructive. She draws on everything. Let me repeat that. She. Draws. On. Everything. Couch, table, floor, chairs, ottoman, wall. She used to have an easel and she spent her time drawing on everything but. She has coloring books and colors on the chairs instead. She has...

So, Mother's Day is coming up. It snuck up on me this year. I truly thought it was next weekend. I certainly think of my own mother and wish her a Happy Mother's Day. Happy Mother's Day, Mom. :-) And then my thoughts turn to my children. They look nothing like me, yet they are my children. Segunda can't stand the stringy bit of peel that sticks to oranges but loves oranges - just like me. Prima needs alone time to gather her energy - just like me. Segunda loves broccoli - not like me at all at that age. Prima loves being physically active: running, skiing, karate, Chinese dance - not like me at all at any age. My heart overflows with love for them often. And my patience often leaks out my ears as the rage seeps in when the whining ticks up one more notch and the shouting matches go to volume 11. But I love them so and can't picture my life without them. They make me happy beyond measure. But there are two moms out there who are living without them. And I a...

We are a month into Strensiq for Segunda. We had heard other patient anecdotes regarding the medication. All positive with a few reporting some side effects. The most common is the site injection sores. Here is how it is going for us: The first four injections had terrible site injection pain. The site became red, swollen and very painful even to graze the spot. Segunda let us know if we accidentally touched it and told us to "never touch my owie ever ever again."  But the next rotation of injections saw a markedly smaller reaction, and now there isn't one at all. We are 11 shots in. This means we are just shy of a month. In the beginning, she suffered acute anxiety over the shots and would begin hyperventilating and panicking the moment I headed towards her refrigerator. She would shriek for daddy to hold her hand. Now, while she isn't fond of them and she sometimes still cries, she is starting to accept them as routine. Now for the fun stuff. In less than a mo...