I am an open person and am comfortable sharing my feelings and as such I want to talk to you today about some of my darkest moments. As some of you already know, I’ve been through a lot in a short period of time and our lives (Max and I) were flipped upside down in the blink of an eye. So, it wasn’t a surprise that “Situational Depression" set in. Today, however, I’m getting better and stronger and I’m very proud of that. I have to hold it together, Taylor is my daughter and I need to be her support system.
In all honesty, at first I did have my doubts though. Could I really do this? And as anxiety built up I cried many nights feeling sorry for myself, I sometimes still do. I just have to keep reminding myself that it is okay to be frustrated that I have to go through extra effort to take care of my daughter; to be frustrated at seeing just how much Taylor tries to do something and is so close, but yet she just can't get it; to be frustrated that I have to clean up vomit instead of Cheerios. And worse for me yet, is the not knowing when/if my daughter will enjoy the taste of food.
One of my saddest notions for me now is to imagine Taylor unable to eat a piece of her 1st Birthday cake. This truly depresses me. I know that even as you’re reading this you may be thinking that this is ridiculous, it is just a cake, but to me it is much more. Taylor’s inability to enjoy a piece of cake is yet another aspect that separates her from other ‘normal’ children. Now, I know that I’ve been told that Taylor cannot distinguish between a ‘normal’ and ‘not so normal’ life, but I do. It is very true what the others have said, “Taylor’s rare condition may very well be much harder on you the parents, than on her.”
And yet in spite of all the hardship how amazing it is to hear little comments such as:"You're a great mom." or "I couldn't do what you do.” help me. Or even seeing Taylor FINALLY accomplish something she has literally been working on for months. Or that incredible smile on her face when she’s moving freely in the water or sitting up like a big girl. "Anyone can give up, it's the easiest thing in the world to do. But, to hold it together when everyone else would understand if you feel apart, that's true strength." - Anonymous
You are truly a beautiful mother with a beautiful daughter. We each cling to our challenges with the hope that all of our experiences will ultimately be for our good. I was touched by your humility and honesty. I love to read your words about your own dear mother, what a great support she is to you. Thank you for your generosity in sharing.
ReplyDeleteI hope Taylor loves me like I love my mother someday! :
Delete) Thank you for supporting us!
This really stirred up my emotions. I was fortunate to have 3 healthy children, I could not even imagine anything that you are going through. I give you so much support for the courage and emotion that both you and Max are dealing with. Taylor is the luckiest little girl to have such LOVING and SUPPORTIVE parents and extended family and friends in her life that LOVES her unconditionally. YOU are AMAZING and having a special needs child is a lot of work. It takes a toll on you, so if you are dealing with depression, that is normal and don't worry about what people may think, because..... the only ones that matter are your FAMILY, FRIENDS and especially Miss Taylor Leanne. She LOVES you because YOU are her MAMA, and like you said, "she does not know normal", this is her NORMAL life. God Bless You Jenna. You have MY SUPPORT.
ReplyDeleteThank you Pat! I appreciate it! And I know Taylor does too and loves all the support we get!
DeleteReading this gave me chills and sniffles. Jenna, Taylor was blessed to have u as her mommy n this world. I know what itslike raising a child w a rare condition. Some days I feel so discouraged and overwhelmed. But then the rewarding days when u see them smile or watch them amaze u w their accomplishments always outweigh the darker days. Continue to pray.ignore any negativity that u may get from ignorant people. And know u aren't ever alone. Don't forget mommy needs mommytime as well. If u ever need anything I'm just a phn call away.xoxo
ReplyDeleteThank you Jesseca! I hope all is well and you and the kids are doing great!
DeleteMy dear friend, I understand your flight, we’ve been dealing with ours for 32 years, all I can tell you is that you need to be strong, because unfortunately there are very cold people out there, but that’s ok, it’s there loss, You see that great guy from upstairs he handed you an angel, it’s not the other way around, however you will become an angel thanks to her (Taylor) why you may ask? because thru her you will learn so many things that the regular person may never get to see. Patience, Love, Endurance, and Compassion. You see he only gives these little angels to very special people, and you both were the chosen ones.
ReplyDeleteTrust me you are going to see so many things that the majority of people take for granted, you might get even upset, specially when they complain about their children, again that’s OK, all it will do is give you more strength,
We salute you, keep doing what you’re doing, it’s worth it.
With love the Vivas Family, Willy, Francis and Leo.
Thank you Willy! I know you can relate and love your words! :-)
DeleteMy 9 year old son has a deletion from 2q37.3 and duplication of 11q24.3 to q terminal. He is doing really well. His speech was a little delayed but is mostly okay now with just a few difficulties with certain sounds (like he says hall instead of whole/hole). His walking is also good, except he has always walked on his toes and he was diagnosed with hypotonia and we were told he has shortened tendo-Achilles so he will be having surgery on both legs this year (we are waiting to hear from the hospital regarding a date). We do have problems with emotional-behavioural issues and had an autistic assessment at the hospital. We were told he has autistic traits but not enough for a diagnosis of aspergers or autism. He also has an undescended testes which is to be operated on (waiting on a date for that too) but overall he is doing really well.
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