Irma's Impact

While Hurricane Irma visited the Sunshine State, my sweet T & I were hunkered down with a few of our favorite things, safe from Irma's wrath. It was an emotionally charged week leading up to Mother Nature's impending disaster, which left most of it's devastation South of us. With it's flip flop track no one knew if they should flee or just prepare to ride it out. When hurricane Jeanne whipped through, we lost our roof to a mini tornado and was displaced from our home for 9 months. While I'm usually worried about hurricanes, that one was the least of my worries- go figure. At any rate, I knew I wanted my daughter with me as she's always been. Her group home was evacuated along with multiple neighborhoods, but she would stay with me regardless.

Initially I almost drove to Georgia, but Irma dropped from a category 5, to a 4, and finally a 3, so I figured we'd stay. An 8 hour car ride into the unknown, with a special needs young adult probably wasn't the ideal situation. My gas tank was full, but gas was scarce and traffic jams were inevitable. My anxiety level was at an all time high, especially when the hurricane intensified and was tracking straight for us here on the West Coast. A friend invited us to their work place, which could withstand high winds and they had a generator. The decision to go hunker down there was made. I was trying not to incur panic onto T, and keep things as light and normal as I could, but she's one smart cookie. Seeing me pack, then moving again to yet another location she became anxious. She wanted to leave immediately, began crying and lunged towards the door. I remembered breaking down in private the night before. I told her not to be scared, mommy would be with her, and everything would be okay. I tried to believe it myself.. And said a prayer with her. She calmed a bit, and smiled. Her safety was key.

The realization that those you love, and all you have, could be ripped from your life so quickly hits you with a force of a cat 5 hurricane mentally. Preparations were underway, as the TV projected Irmas whereabouts and final destination. Friends and family from out of state were voicing their concern. During the storm surprisingly we both slept soundly. The following day partial power was lost and the generator didn't kick in, so movie time for T was interrupted. Those who have children on the spectrum, or with any special needs know how this turns out, as routine is of the utmost importance- major behavioral meltdown. My nerves were shot and my legs were bruised- but we got through it like any other.

Post Irma we thanked our lucky stars our lives, our homes, our community was spared with minimal damage, as sadness for others who weren't washed over us. Clean up began, power outages rampant, and with businesses affected we were already mentally and emotionally drained. It was apparent there was no getting around  physical exhausten as well. We either heard of, or experienced those who take advantage in vulnerable times; but the light of so many angels in disguise surpassed the negative. God places people, situations, and opportunities in our path. I allowed my fear to overpower my ability to trust in Him.

When faced with adversity that is when our strength is found. Irma's impact taught us that leaning on one another, having a tiny bit of faith, and finding hope along the way builds a foundation of strength that will supercede anything that may come our way.   

Learning As I GrOw- caregiving sometimes means letting go

I still remember the older gentlemans face as he helped us choose a new dryer. We had my daughter Tiana Hope with us and she was about 6 at the time. I was distracted, as going to the store with a special needs child is never an easy task. I explained a bit about her and he proceeded to tell me that he understood. He too had a daughter born with special needs, with more physical challenges  and that now she lives miles away in a group home. He explained that it was the closest available for her needs. I felt bad, even though I was at a different point of our caregiving journey, but I told him how sorry I was. Continuing on I showed empathy saying how hard that must be; then I blurted out how I would never place my daughter in a home, how she'll live with me always. He replied how difficult it had become for he and his wife, especially his wife, due to the care she required.  I saw tears well up in his eyes and he quickly left. Before long another salesperson came over.  A feeling of dread washed over me and I wanted to find him, apologize. My intent was not cruel and I'm sure his heart was heavy. At that time I was just at a different place on our special needs journey. Now, I am where he stood. There's so much stigma out there about placement. Too much actually. So much that it took me over a year to talk about my daughters move into a group home at age 18- now almost 2 years later. Until you get there you really and truly do not know. We've had our ups and downs, just as every other SN family has but the most important thing to acknowledge is that each one of our journeys are different. Relatable, but different. My daughter is my only child, my life, my heart, my sunshine, my angel in disguise. I have fought for her since day one and I've got the 'scars' to prove it. That fight will continue on for as long as she needs me. I will always be her advocate, teacher, nurse, lawyer, etc and of course her mom. Placement does not mean I love her any less. We don't always like choices and sometimes there really isn't an option. T is happy, smart, giggles and love. Unfortunately, there's behavior issues along with her diagnosis of Pachygyria, which we did not get initially, only told brain disorder, macrocephaly and seizures. We later learned she had developmental delays, speech delay, autism, pdd,& sensory issues. Back then I didn't have the type of internet and groups available today. I made sure she had what the drs advised  including  medications, therapies, a special school,& additional care. I made her her very  own magnetic picture cards for the refrigerator, picture books, held my own therapy sessions and prayed like I've never prayed before. As hormones changed so did her moods, which turned to aggression. The outbursts were intimidating as her strength seemed to double and I was the target. Locking myself in the bathroom literally happened at times until she calmed down, not to mention attacks while driving.  Meds have helped and T recognizes her behavior  but only after the fact. Sorrys and kisses abound as T is usually so sweet. The day her psych dr had her baker acted after an outburst in his office just about pushed me over the edge.  My heart was broken into a million tiny pieces. I have not even touched the surface of  what we've been through. People have said all kids at 18 are leaving home, and I understand that, I appreciate that, however when your child will mentally be a child forever and their milestones are totally different that's what's gut wrenching. Letting go is not taken lightly and it is still hard to accept. I am very involved, and she comes home often. A multitude of research with a team of specialists helping me along made it possible. No, it's not an institution. T lives in a regular house with 5 other girls her age, shares a room, goes on outings, even has a pool and she's much more independent. We are both trying to embrace our independence. She's growing up, she's happy, and she's going to be just fine.i suppose I will be eventually. Day by day I learn to let go a tiny bit more. With tears of both sadness and joy in my eyes I will never ever totally let go.  Now I stand where he stood. Now I understand. I hope you will too.     *photo of Tiana Hope taken by April K Corbett.          *this post was featured on The Mighty FB&website July 2015