Sometimes things are not perfect

You know, when you go into this parenting thing, you’re not expecting to have a child who has special needs of any kind. You think, oh, I’m pregnant! I’m going to have this big ball of perfect who will sleep all night, play with me, and love me unconditionally. Then the baby is born, and you think, Oh, ok so it’s not like I expected, but that’s ok! It’s not that tough! It’ll get better.

You don’t expect there to be any issues, you think your kid will grow, go to school, and not need anything to help with that. He or she will develop to be perfect all on their own.

Except, sometimes they don’t. Chloe is one of those cases.

Chloe is 17 months old as of this month. She is happy, playful, and energetic, and smart too. She is also speech delayed severely, has allergies, asthma, a heart murmur, a childhood immune deficiency, and chronic severe respiratory and ear infections. She will get better, but she is also behind.

You see, when Chloe was an infant, her respiratory infections caused ear infections. Her doctor never told me she was having these infections as bad as she was, and downplayed it. At 10 months old, when she was hospitalized for a stomach issue, we discovered a symptom to the immune issue. We changed doctors after another poor visit, and keep in mind, we had about 35+ visits to the same doctor in 10 months. This new doctor found the heart murmur (confirmed by cardiology), and she sent us where we needed to go… to specialists. After 8 months, we have some results. But now we have to fix the damage that not finding it for so long has caused.

Chloe at around 12 months. Cardiology Appt.

Breathing Treatments for asthma and allergies. 

Chloe hears things as if she is underwater half of the time, because she is. Her tubes in her ears are often filled with fluid. When you get an ear infection, the infection itself can go away in a week or so, but the fluid stays for up to 6 weeks. All those infections made her not hear things correctly. We noticed at 12 months old that she was behind, but we were in denial and kept hoping she would perk up. She would get better. For the record, please don’t tell someone who tells you that their kid has a problem that can affect them long term that their child will grow out of it… you are not a doctor, and that parent is often not looking for that response… they are informing you of their child’s health. Just an FYI from someone who has been there.

At around 11 months, during a hospital stay

At 15 months she was not better. She was mostly non-verbal, and knew one word: Daddy. It was time to see Early Intervention. Luckily, she qualified, and was quickly gotten set up with speech therapy. They will have their first official therapy session in 2 weeks.

Today, we had to go to the doctor’s office. 4 days ago I had to take Chloe to the urgent care for yet another ear infection. It sucked but, you know, you do what you have to do. You know you’re in the doctor’s office too much when all the staff knows you by name. She’d been on antibiotics for days at this point, so I figured she’d be a bit better.

Nope. So much nope.

You know, it really sucks to see your kid go through hell and not be able to help or really know what’s going on, or even be able to communicate with them…

Doctor checked her out, and her ears are highly severely infected. So her antibiotics have done nothing. Her eardrums are warped and her ear hairs have no movement to them, so there’s fluid in her ears, again, and it’s bad, again. She is in severe pain, and we never noticed because we thought it was another tantrum, that she was just cranky. Talk about feeling like shit. (For those of you who can communicate with your kids, please be so, so grateful you can actually do that…)

Us, today. Before I felt like crap because I found out she was still hurting...

Going out to places sucks, by the way, because of people who aren’t in our lives. We have to raise our voices a LOT to get Chloe to hear us and understand us, and we get looks like we are Satan incarnate because of it. Yet, if we allow her to tantrum and not correct her, we get those same looks. I hear myself constantly explaining to strangers who don’t matter that, “I’m sorry, she can’t hear us, we’re trying…” Traditional discipline does not work with her, because she cannot hear us properly to understand us. So, keep in mind when you see that kid throwing a tantrum in the mall, the mom raising her voice, the 6 year old in the stroller, the child on a harness… you do not know their life, or why that child is doing what they are doing. Special needs hides in children who do not look like they have special needs.

I mean, look at this kid. On the outside, you would never know she has any issues.

So now we’re waiting to see ENT (Ear Nose and Throat for those of you who are not specialist-slang savvy) to get a surgery date to put tubes in. Hopefully, even if it does not help with her speech, it WILL help with her pain. All I want is for her to not think that pain is normal…

I guess this turned into a rant and a bit of a preachy blog as well. Oh well. In all seriousness though… my kid is loved. She is perfect to me. She is also special needs. It makes her no less loved, it does not make her get away with murder, and it does not make her spoiled, entitled, bratty, obnoxious, or lacking of manners. It makes her need discipline that you may not understand, and a gentler hand to handle her tantrums, which come from a place of pure frustration and not being a brat.