22Q11 Anemia Asthma Atrial Septal Defect
Attention Deficit Hyperactivity Disorder Bifid Uvula Chronic Otitis
Media with Effusion Cleft Soft Palate Congenital Heart Defect
Continuous Positive Airway Pressure DiGeorge Syndrome Dysphagia
Gastronomy Tube Generalized Anxiety Disorder Growth Hormone Deficiency
Hyponasality Interrupted Aortic Arch Laryngomalacia
Left Ventricular Outflow Tract Obstruction Lymphopenia Nasal Turbinate Hypertrophy
Obstructive Sleep Apnea Reactive Airway Disease Ventricular Septal Defect
Tracheostomy Tracheobronchomalacia
Every diagnosis is hard at first. You'd rather your child not have the thing. Certain things about our life don't sit so heavy any longer, some do, especially when I'm in a dark mood. Her heart and lungs and airway are those heavy things.
In 2020 Growth Hormone Deficiency hit me hard, it was the toughest thing for me since Lydia needed a trach. It was the idea of something else, something else that we would continue through puberty, something else that needed daily injections, something else when I thought we were finishing up the toughest chapters. I think that last piece is still lingering, we thought we were done with the trach and done with the g-tube and then we were faced with something else. It's gotten better though, it's just a daily thing we do and Lydia is really good about it.
We added a new diagnosis this fall,
one we've been suspecting since last spring.
Attention Deficit Hyperactivity Disorder and Generalized Anxiety Disorder
ADHD and GAD went about the same way but I'm not to the other side yet, in fact it took me 4.5 months to write this blog.
Lydia spent about 3 hours testing one day while I spent 3 hours talking to her psychologist. What an amazing human that lady is and fortunate for our situation, she's raised her own son with similar diagnosis in our same school district. She knows the ropes and has been a tremendous guide and advocate. Lydia's school and teachers have also been terrific.
It's another thing. It's another diagnosis. It's going to be with her for a lifetime.
And I know nothing about it. Like every other diagnosis I'm learning from square one. This time around I'm just starting at a point of exhaustion and depletion, not because of my sweet girl, but because of the ways of the world. The end of 2021 and the start of 2022 have not been easy. I see this as a challenge but this one feels harder, ever changing, unpredictable and so many factors are outside of my control.
Lydia is outside of my control and I must remember that every day, every trying morning, every dramatic bedtime, every time she seems less mature than your child, every time she's having separation anxiety. Lydia is a beautiful human making her own mark on this world and she's teaching her mama so many things. Lydia is just right, exactly how God intended and her brain works a little differently than mine and maybe yours. I had 32 years of pretty simple living before I had Lydia, which I now know was my rest, my calm, my preparation for my greatest adventure...being Lydia's mom.
So, ADHD and GAD. It's going alright. Her psychologist is a wonderful resource. Lydia's Kindergarten and First Grade teachers were accommodating her before there was even talk of a 504 plan. The school counselor is a phenomenal person who has stepped us through the 504 process. I'm signed up for a Parent Group Class at CMH to learn as much as I can. I'm reading or preparing to read two books recommended by doctors and friends.
We're going to be alright. That seems funny to say because when I've shared this with some they respond with "oh, don't all kids have ADHD these days?" or "well that's not so uncommon." They mean no harm and I believe that. Yes, it is one of the most common forms of neurodivergence. We'll learn, she'll manage, it'll be okay...right now it just feels like another mountain to climb and there is already an entire mountain range. I'm taking it slow. Lend me your hand if you're on your way up or give a high five if you pass me on the way down.
