Tuesday, May 26, 2015

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 

Monday, May 25, 2015

Learning As I GrOw- comfort zone

Year after year, month after month, week after week, day after day, hour after hour, minute after minute... we are in our comfortable space- our comfort zones. I hear myself saying I need to do this, that, or the other and once I do changes will occur.  My mind wanders away from the zone for a while, unaware how it always seems to return. The reflection I see is unnerving. Unless I literally move out of this space there will be no change, no growth. It might take a minute, or quite possibly a year; but in order to see change you must feel it. Leaving the comfort zone is scary! No matter what changes you are invoking  you must let go of that invisible security blanket you cling so tightly too. Baby steps are fine, but you must let go, take that step of faith and believe in yourself. Each time you look back you will be farther away. Just when you think you cannot leave you will have found that you already left, because instead of seeing your comfort zone, you will see change taking place~ april XO

Sunday, May 24, 2015

April Mae Create- sharing my imagination

Writing is my passion and I enjoy photography,  however my love of painting began when I started to paint with my daughter. She was born with a rare brain disorder and we paint together for fun and for therapy. I paint alone as well and have commissioned a few projects along the way. All paintings are done in acrylic and is expressive art. If interested in purchase of an original or print copy message me! Hope it inspires you to find some time to create! ~ Artwork by April K Corbett

Travelling Voyage: the search continues

It was an exciting trip to the Keys as my husband and I anticipated finding our future home- a sailboat. We didn't however anticipate it not being the one for us. This journey has had its highs and lows. I think we're both a bit discouraged by what's available, cost, loan dealings etc; but we know it will happen. What we want and what God has for us can be two entirely different things. He knows our hearts desire and is working in His realm to help us accomplish our goal in our realm. We found another boat and are pending a call back from the dealer.  I can already feel the wind rushing through my hair as I picture myself sailing away to some exotic island while sippin on some sunshine. Like the tshirt we saw says ' sell your stuff, keep the dog and live on a boat' ... that's the plan!  photo credit April K Corbett in Key Largo *Photo contest winner at Share A Little Sunshine on FB. 

Wednesday, May 20, 2015

Learning As I GrOw: life is messy and that's ok

Sometimes we see people's FB posts and things seem to be so perfect- I rarely post the messy parts- who does. I will say today was perfect, in the sense that being with my family is special to me, however far from perfect in the way others may view it or in how I feel mentally or physically at the end of it; I'm exhausted. This is the norm as a special needs parent, or any parent really, just a bit more exhausting. My daughter  T who is happy, loving, determined, bright, funny, outgoing etc also has to deal with a rare brain disorder which pretty much changes everything. So, here's a small view into our day: T was up at 4:30, so were we since she was asking for cereal & Barney and even though she had both she was repeating it over & over. Later that morning we go to brunch where she's somewhat loud & repetitive, but doing well. She asks for chocolate milk, of course wanting more but they were out- possible meltdown- thankfully she chose apple juice. Trust me when I say it's not fun to see an 18 y/o melting down. We then go home to bathe our pup Rocky so we can all go out into the community on an outing. In the process of attempting this Rocky is soaking wet covered in soap, T is crying because we asked her to move out of the way. The dog gets loose, takes off up the stairs with T close behind letting him into the house where he's running all over the place. So, we finally get to our outing, everything seems fine when BAM.. meltdown mode- T's mood is brewing- must leave at that moment. We do. This is common. There are good days and bad days. Pachygyria does not allow life to go as planned. Through it all I cherish the moments in between the messiness. To me it will always be perfect~

Re Post from a previous FB blog

Monday, May 18, 2015

Learning As I GrOw: sharing my heart

I recently took a few days off and flew to my home town to visit my ailing grandfather and also lend support to my grandmother. They are both in their 90's. In all actuality it could be the last time I see them and as sad as that is I know they've both lived a long, full and happy life. They are the epitome of positivity, strength and love. I went by myself, without my daughter or husband, which allowed me the leisure to visit with them, love on them and also to reflect on my own life. I have their traits. When I look back on all I've been through I don't feel strong, I just was and continue to be. My grandparents taught me that being positive is key, In a world that seems to perpetuate negativity I am blessed to have experienced just the opposite. That's not to say I haven't had my share of turmoil at one point or another, but it certainly helped shape the person I am today. My husband and I recently took a long overdue weekend retreat to the Keys where we took time for one another. I don't think couples do as much together as they used to; with all of the technology today it can be easy to take each other for granted. You never know when you will share a last moment together. Don't let the last memory be sitting at a table on your smart phone or working so late you can't say goodnight. Say I love you more, hold hands, take a day off together and share moments that will strengthen your bond. While in the Keys I kept seeing red hearts at businesses everywhere. I found out that an artist makes them to share with the community. The meaning: whatever you want it to be. In my mind an angel sharing love- isn't that what we all should be doing? Whether family, friend or foe life is too short for negative attitudes, busy schedules and insensitivity. We have the opportunity on a daily basis to share our hearts; I know I would much rather be remembered for that.