Grief - Not the Kind You Think

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 bones
• Broken bones in utero (6 of them) that pulled skin in when they were healing - so she had dimples in her legs and arms that cause her pain
• 6 fingers with contracted joints which means she cannot straighten her fingers giving her limited mobility
• Missing 6 front teeth with a 7th on the way out that really hurts her
• Migraines
• Stomach aches (frequent)
• Vomiting (generally in the wee hours of the morning)
• Dairy intolerance
• Must have low calcium or risk kidney failure
• Gross Motor delays
• Speech delays
• Short Stature
• Skin irritation
• Sun sensitivity

She sees a pediatrician, an endocrinologist, an orthopedic surgeon, a dentist, a speech therapist. She has seen a hand specialist, a physical therapist and a neurosurgeon. She had an achilles lengthening surgery on both legs. She had stretching casts on her hands for 6 weeks and stretching casts on her legs for 6 months. She wore AFOs 24/7 for 4 months and then twister cables for 6 months. She has been getting an injection three times a week for 7 months, which is a lifetime medication.

We met with her pediatrician last week for her well visit and discussed the vomiting and migraines as a possible sugar problem and her pediatrician isn't convinced that is what it is but told me to keep up with the food diary. She called her Endocrinologist who agreed and he isn't convinced either but to keep up the food diary. So how long do we have to deal with 2:00 a.m. vomiting and migraines before somebody figures out what the hell is going in my baby's system? We are giving her Glucerna every night and the doctors said to keep doing it because it isn't hurting anything. But how do we know? We are balancing out her carbs, giving limited sugar, and trying to push the protein as best we can. A reasonable diet for anyone really, but is that going to make a difference for the vomiting and headaches? I don't know. I don't want her to suffer like this anymore. Watching your toddler stand over a toilet bowl at 2:00 a.m. and calmly throw up while asking you to hold her hair back and wipe her face is disconcerting at best and a bit panicky at worst because there is no obvious cause.

We just learned this week that she has hearing loss in the lower pitches in both ears. It could be because the three tiny bones in her ears are affected by the HPP. It could be fluid behind her ear. We aren't sure. So, we are adding an ENT to her list of medical professionals to figure out what we can do for her. She frequently says, "What?" and she is flunking phonics. Her phonics teacher sent home some tools to help us help her learn the alphabet and Segunda joyfully works on her "homework" everyday. But she has no idea that the letter 'P' is the letter 'P' and not an 'M.' Is it hearing? Is it a learning disability we haven't uncovered? Who knows? So we tackle hearing first. Maybe it's tubes, maybe it's hearing aids, maybe it's simply a round of antibiotics to clear any fluid. 

When I learned about her hearing, I spent the day in a sort of hazy grief. How much more does she have to go through? That same day, I picked her up from school early because she had another migraine that I needed to get gone for the hearing evaluation. I don't care who you, you are not going to be able to listen to high pitch sounds with a migraine and not fall over in a dead faint. So, I got her fixed up and off we went. And she rocked the evaluation. She was so focused and quiet and did everything she was supposed to do. She is so great with all of these appointments. She has trepidation going into it, but once reassured that she won't be getting any shots or blood draws, she enjoys them and does everything she is supposed to do. I'm so frustrated on her behalf that instead of getting a handle on her disease, we are just uncovering more and more symptoms that we have to deal with. And she is such a treasure through it all. She just goes about her day and doesn't dwell on anything. She tells me about her pains and I administer Tylenol or ibuprofen as needed and try not to cry. She is so matter of fact. It takes a lot for her to cry in pain, and when she does you can bet it's serious. I don't want this to be her normal, but it is and I'm learning slowly to deal with that in spite of all the speed bumps we seem to be running over lately.

In spite of all of this she can pull up a low stool to the kitchen counter and heave herself up onto the kitchen counter to sit there and keep me company while I cook. She is tiny - this should not be possible, but it is and she sits on the counter pleased as punch. She helps me cook. The other day she snapped all the green beans for me and loved every second of it. She runs. She is almost ready for a tricycle with pedal extenders - Santa might bring her one. She talks all the time in spite of her teeth and her speech delays. She is clever enough to get around any obstacle she is facing. She is remarkable and I learn from her every single day. I'm overjoyed that she is my daughter. Now if I could just take some of her pain away. If I could just take some of the obstacles out of her path.