Friday, April 6, 2018

A Birthday Tribute

From the moment she entered this world, she has fought for everything. In the beginning, she fought to breath and stay with us. She has fought to get well enough to go out in the world, even somewhere as simple as the park. She has fought with her body to sit up independently, to look around and be able to explore her environment. She fought to see. Everyday, battling her vision impairment to be able to understand what she is seeing around her. She has fought for every aspect of her existence. And with how difficult everything has been for her, she still smiles, laughs and loves. She has proven to her family and her doctors that she wants to be here. No matter the difficulty, pain or exclusion she has to endure.

And I see her as nothing less than a warrior.

No  matter what obstacle is placed in front of her, Morgan will find a way through. Even if I worry about how everything will work out, how we will manage. She guides me on this journey and we find our path.

The best advice I've ever been giving has been, "She will tell you what she needs." Advice that came from both our very good friends and from Morgans Development Specialist in the hospital. And they were absolutely right. But I never imagined how much she would actually need.

It's never easy. I worry about so many things. I worry about how she is doing in school. How she is around the other kids and how the other kids are around her. I worry about how family is around her, how she is around family. I worry about the what ifs. Even though I know I shouldn't, they lurk in the back of my mind waiting for a chance to come forward. What if I outlive her? What if she outlives me? And how is it I can have two contradictory worries at the same time? And so many more.

She has such a long laundry list of medical issues that is a constant battle to keep up with, fight and manage.

Right now she is deaf in her left ear. Her ear tube has been having trouble and we are on our second Auditory test, 3rd or 4th appointment with her ENT, and a second round with ear drops -- a different kind this time. She still has an Artial Septal Defect (ASD) in her heart that we are closely following with her Cardiologist. We still have to account for and make accommodations for her Cortical Visual Impairment (CVI) which we follow closely with her Opthamologist. We follow closely with her Neurologist to keep her seizures under control. And not to mention, she is allergic to pretty much everything, all nuts, strawberries, eggs, certain medications and dogs (throwing a big wrench in our quest for a Service Dog). She has had anaphylaxis once and I've had to use her epi-pen. An event I hope we never have to repeat. And many other medical issues, which honestly, would take me too much time to write about today.

With her birth has come a complete change in how I see things and in how I live my daily life. I could be angry and bitter about all the horrible things Morgan has to go through, and believe me, I have my "I feel sorry for myself days." But when she smiles, laughs or looks at me with that gaze of hers that hold bottomless depths, I feel such warmth and love that none of the difficulties will ever change my dedication or sense of purpose in fighting these battles with her.

She wants to be here with us. And I can't imagine our life without her. I'm grateful for the good days and time with her and her brother. She is different, and in turn, she makes us different.

And I hope, makes us better for it.

I want to wish my beautiful Little Warrior, my Little Ball of Worry a very Happy 4th Birthday!



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