A reader left me a comment last week that really took me back. This was the comment:
” I feel so badly for Trinity. She’s been neglected and deprived a healthy emotional state. I’m unable to understand why it’s more important to devote 99% of yourself to a daughter for whom that investment will yield the least results and make virtually no difference in her life than to the daughters for whom your presence and devotion would make the greatest difference and mean the world – not only to them but to the impact your deposits into them will make in their children and so forth. I cannot imagine institutionalizing a child but when I see the reality that is the life of your other daughters and your marriage, I cannot imagine not institutionalizing.”
I appreciate all my readers and even though I completely disagree with her comment it made me think that I may not be doing a good job conveying all the wonderful things Tiara adds to the family. Not only is she the center of our family, but we wouldn’t be the Goff family without her. She may be difficult and require more care than the other two but the benefits of having her in our home far outweigh the negatives. Putting aside my own feelings, which are, I couldn’t live with myself if Tiara was in an institution and I am pretty sure she would die from a broken heart if she didn’t live with us, I know my girls love having her in our home. So without considering Tiara, Lou or myself and only looking at the impact Tiara has on the life of her siblings this is what I know.
- Tiara is the one Tabitha and Trinity look for when they first wake up or walk in the door from a long day of school or work.
- Tiara is the one who can get anyone smiling when she busts out a dance move and starts shaking so much the car actually moves or the foundation of the house appears to be at risk of cracking.
- Tiara is the one who burps in your face, smiles and then says “I burp,” followed by a laugh.
- Tiara is the one who runs around the house in sheer shirts with no bra and a diaper with flesh everywhere, smiling and laughing as if she was a cover model. Her overwhelming love of herself is contagious. It reminds the girls that you don’t have to have perfect teeth, a perfect body, perfect skin, perfect clothes, etc… to love yourself. Tiara is obese, has chipped front teeth, tumors on her skin, wears crazy un-matching outfits that she thinks are “hot” and yet she knows she is great and her sisters think she is adorable and beautiful. Plus, they are actually jealous of how photogenic she is!
- Tiara is the one who runs up to them when they seem sad and gives them a hug followed by the words “sad”.
- Tiara is the one who always says thank you for absolutely everything, reminding them to always be appreciative.
- Tiara is the one they can tell a story to about a boy, a friend, or something that happened at school and she will match their emotions and not make any negative comments. If they are happy, she is happy for them. If they are over the top thrilled, Tiara will start running the house in circles, screaming “yay, yay, happy, happy.” Her behavior just reinforces their mood and makes Tabitha and Trinity feel really understood and cared about. They are both always telling her about their day whether they think she “gets it or not.” She loves listening to them talk and they love having someone who always wants to hear their stories.
- Tiara is the only one who will let Tabitha clean her ears. Tabitha has an obsession with cleaning people’s ears and almost everyday, Tiara will lay down and let Tabitha get to work.
So, yes living with Tiara can be hard, exhausting, frustrating and a challenge especially in social situations but her sisters would never trade her for a “healthy, normal” sister. A “normal” sister may make for an easier life, but would it better? I don’t know, but what I do know is they get unconditional love from Tiara. That is a gift which is hard to come by.
I would also like to point out the fact that I do not spent 99% of my time focused on Tiara. Yes she gets more time than the other two, but because I know that, I am hyper-vigilant about the other two and their lives. I do absolutely everything I can in my power to make sure they get all the emotional love and support they need. Plus, because I am always home with Tiara, they always know where to find me. I am not off lunching, working outside the home, working out at the gym, doing dinner dates, attending galas, going to fundraisers, etc. I am home, waiting for them to hear about their day.
So, I am guessing I may have lost a reader by responding to her comment publicly but I am grateful she made the comment because, had she not, I wouldn’t have realized I was being short-sided in my presentation of our family life. As one reader once told me “your blog is like a reality show but a reality blog.” I loved his comment but now I have to remind myself to show all aspects of our life on my reality blog, not just the crappy stuff.
Happy Tuesday!
xoxo tiffani
You can download my blog onto your kindle!
Don’t forget to check out my sponsor, Prasad Photography!
Well said BF!!!!!! Anyone who knows you and your family, understands the special gift that TT brings to your lives. Love ya xoxo
YOU GO WOMAN! YOU ARE PHENOMENAL! They all know it… and WE all know it! Thank you for enlightening MY life too! XO
Good Morning Tiff,
You know I have to comment on this one….lol
As you indirectly communicate all the time in your writing, we are all souls here on earth to love and learn. That’s it. We aren’t here to earn big money or have a “perfect life”- not unless it will bring us more love and learning of course. And sometimes those things, or the loss of those things can bring about big life lessons for people. But what I love about your blog is it depicts a beautiful and soulful life: one filled with love and learning. You can see the bigger picture, and then you write about it. You can be a teacher of sorts for people like the one who wrote in regarding institutionalizing TT. Poor thing, she has a lot to learn……
And huge props to you for taking her comment as a catalyst for something good!!! WOW, you never cease to amaze me.
Here’s to you and TT and what you have accomplished locally, within your own family, and globally with your blog. ESPECIALLY after reading the last few posts in your Journey series, I realize all that you have been through to be where you are today. I’m excited about whats ahead for TT and the whole family.
Thanks for sharing all the good news in todays post. LOVED IT!
With love,
Marcy
I started reading your blog this morning and had to stop because I was so upset by the first few sentences. Clearly this reader does not know you or your family! After a few cups of coffee and some hugs from my kids I read on,Wow! Tiara brings all of what you expressed and more to your family life and she has done the same to mine. Whenever Tiara hangs around my kids they are better for it…always!!! I know first hand what an incredible job you do with this difficult balancing act. Trinity and Tabitha are each unique, witty, creative, and smart individuals who are full of compassion and empathy. A winning combination that will take them far in life and I believe they would attribute to living with Tiara 🙂
You amaze me with every post. I don’t think I could of responded so eloquently to such a harsh statement. As you have stated before you have become more compationate and understanding to unruley children, obesity, and ofcoarse people with all disablities. Don’t think for a second that your 2 other girls haven’t been taught that incredible valuable gift from you, your husband and ofcoarse Tiara. Blog on……
I am glad you wrote about this subject. Having 3 girls myself and a reader of your blog, I have imagined what it would be like to have a child with special needs and the effects on the other children, especially the youngest. I am sure many people have contemplated this and I think it was brave of your reader to put it out there.
Every family operates differently, one way or another, and has its own set of challenges. If your home and hearts are filled with love than the rest of it is just life…the good and/or bad. You ALWAYS seem to make the best of everything that comes your way.
And besides, it is the differences that make life interesting. If we were all the same it would be dull, dull, dull. I have to remind myself of that fact…it seems the older I get, the more ridged and set in my old ways I become 😉
I love that you made a list of some of the things that Tiara does for your family’s happiness. It behooves me that some people would presume to know better than you but you are a very STRONG woman and you are amazing at what you accomplish for ALL your daughters!
Lanaya
http://www.raising-reagan.com
Tiffani,
As always, wonderful post. You did a beautiful job at writing that response so eloquently! I enjoy reading the good, the bad and the ugly. I recall reading about your other daughters, as well. So maybe that reader only read your Monday posts? Anyway, keep doing what you do. It’s your blog. Your creative outlet. Have a great week and don’t let other’s discourage you. Stacie xo
This makes me so sick I actually have to calm down before I can respond. I’ll be back later.
Your other two girls are learning patience and unconditional love. They are learning that each family looks different from others. They are learning that joy can come in unexpected ways.
You are a wonderful mother. I feel bad for the other lady. Her comments are small minded. She doesn’t see the beauty and joy standing right in front of her.
What struck me by the post was the “financial language”…’investment’ ‘deposit’ etc. I applaud your being able to step back and take the comment in a positive fashion. But, I myself will say that I have not ever gotten the feeling there was something lacking for the other children. If I recall correctly, Trinity is in volleyball, does Jr. lifeguard and you are there to pick her up everyday, with Subway. Tabitha, appears to do exactly what most children her age do, flit in and out, hang out with their friends, neglect their cars and bedrooms haha. The balance of life/love/learning/nurturing of your ENTIRE family is in the posts, it just may not be so obvious. I know myself, if I had to write each day about my life, you probably wouldn’t get posts filled with “I walked by the rosebush and in the middle of all the spent blooms was one perfect rose,” but more OMG YESTERDAY! the second printer arrived and althought this one actually came out of the box working, it wouldn’t format with the computer..
Your blogs actually make me a better person AND MOTHER…and if it does that in a short paragraph or two for me each day, I cannot imagine what a wonderful impact you have on your oldest and youngest children…I cannot imagine the daily gifts they receive from having you in their lives and you as a mother.
I find the comment from your reader to be short sighted and hugely offensive. It is very easy to sit back and judge someone when you do not have to walk in their shoes. Having a child with tuberous sclerosis myself and two children who do not have TS, I can only say your reader has lost the forest for the trees. Has she considered the compassion the healthy children learn from having a sick sibling? In a world focused on me, myself and I, it is refreshing and amazing when you find young people who care about more than what they want at any given moment. What about the problem of bullying? My children will never treat someone differently just because they don’t fit somebody else’s ideal. They have learned to value each person by what makes them individually unique. What about motivating people to help? I know a family who had a child severely affected by an unknown ailment. Her brother grew up and chose to become a doctor to help find a cure for his sister. What if that family had institutionalized his sister? The loss would not only have been for the family, but as it turns out for the world.
Character is forged when we walk difficult paths and come out better at the end. I believe that my daughter, like Tiara, is a gift given to our family. To mold and shape us into better people than we would have been without her. Is it difficult at times? Yes. Do we wish she didn’t have to endure all she has to endure? Absolutely! But we would never trade her for anything. Nor would we ever abandon her to an institution. And neither will Tiffany.
“I cannot imagine institutionalizing a child but when I see the reality that is the life of your other daughters and your marriage, I cannot imagine not institutionalizing.”
I am the reader who made that comment. I am also a mother, a wife, a daughter. And I am a sister in a family of 4 siblings, one of whom – the eldest, TJ – has Tuberous Sclerosis. My brother was never institutionalized. We didn’t even know (nor did the doctors diagnose) he had TSC until he was in his teens. Infantile spasms led way for a variety of other seizures and life-long hospitalizations ensued. He was diagnosed with severe epilepsy and, later, autism.
Growing up, there were difficult times. Rarely were both of our parents at the same function and there is a sadness a child feels – a resentment even – at that reality. Yet our lives were enriched by my brother in ways you have similarly illustrated. We were a far more understanding, accepting and flexible family and, as children, we learned compassion by living with him. When my other brother married, TJ was his best man. When I married TJ asked “me the man?” and my husband and I yelled “YOU BET!!!” and he was the co-best-man, along with my husband’s brother. Now that my parents are older and we’re in our 30’s and 40’s, TJ shares months with each of us at a clip because we adore him and he’s brought an infinite amount of love, purity of spirit and joy to our lives. Any of your special needs children should be so lucky to have siblings as committed and loving well into adulthood.
HOWEVER, TJ has NEVER in his entire life exhibited an ounce of violence towards anyone, not even a spider. Not a shred. He is kind and gentle as the day is long. Even when my toddler would relentlessly hang on him and be utterly obnoxious, he would say “no-no-hurt-hurt” and we’d peel her off, but never expressed the slightest bit of violence.
And THAT – and ONLY that – is why I commented as I did.
The extreme violence you’ve described to come from Tiara on a daily basis is what makes me sad for your family and the direct and indirect ways in which that affects the lives of your other two daughters. Understandably, their friends cannot come to your home for their own safety. And the day will come when their own children cannot spend a weekend with their grandparents because the potential for their physical harm is too great. Most striking is Tiara’s strength and the quickly escalating level of violence. And regardless of the immediate needs of your other children, everyone must engage and react the moment you give word or endure the unimaginable wrath that is Tiara’s explosive violence. During a neurology visit, you were attacked twice in close succession with brutal force and violence; your head pulled to the ground, held in place and repeatedly kicked while you were choked and had it not been for the fortunate intervention of office staff, it could have been far worse. That same attack would be disastrous on Trinity. There is also the request from your own husband to cut your hair so short that she cannot grab it and pull your head at will throughout the house, in the car, anywhere – and, of course, the signature of TJ’s relentless scratches on your body.
All of that is troubling and a blaring alarm of what’s to come and it’s what inspired my comment. Ironically, my substantiated words were defined as outrageous and harsh by your other readers – yet not the violence you and your other daughters endure daily. Strange.
Worst of all are the reactionary, predictably narrow-minded comments admonishing the idea of institutionalization and describing it as heartless abandonment which will bear a great deal of weight on loving parents who feel no other choice, for their own safety and that of the rest of their family.
As if they haven’t struggled enough.
Thank you for explaining your story and the reasoning behind your comment. I guess most people including myself have issues with institutionalization based on what we have seen in movies and read about in the newspapers. I will have you know that I once spoke to her case worker prior to the brain surgery asking about the possibility of placement for Tiara if things got worse. Do you know that she told me, she didn’t think Tiara could be placed! There are some really nice group homes in our area that some of my friends have considered for their children and one Mom has actually put her son there because of violence. Yet their children do not have the same medical issues as Tiara and they are both potty trained.
Either way, we can both agree to disagree and I appreciate your honesty and caring enough about my other children to take the time to comment!
You are so awesome!
Inspiring…
OMG ~ a follow up comment from the commenter. Impressive. I give her props for that and although as you said you can agree to disagree you are both very passionate about certain issues and no one can be faulted for that.
Thank you so much for linking your favorite post this week to the Raising Imperfection Sunday Link Up.
Please come back Friday to see if you were featured.
Lanaya
http://www.raising-reagan.com
Okay, I’m finally going to comment on this because it’s National Rare Disease Day and I seem to be on a roll today!
First of all, you are a great Mom and I’m very sorry you had to open your email one morning and read that comment. Second, I would love to know what makes ANYONE think they have the right to make suggestions on how you parent, or where one of your children lives! I’ll get to the I word in a second.
First:
“make virtually no difference in her life”
This is the year 2013. We live in a world where recovery is possible from all sorts of conditions and happens every single day. I’m sure it’s easy as pie to give up hope on someone else’s child. I’m guessing we wouldn’t be hearing the same words if she was talking about her own child. I did read the follow up comment and still never read she has the personal experience with her own child.
I personally am finding new things, simple things, every day that seem to be helping some of my daughters symptoms. Nothing is ever a waste of time. This is your child. You gave her the very breath she takes. Everything you do for her might eventually make a difference.
As for the institutionalizing comment—-
If you had a child with Cancer and the drugs they were taking made them irrational, angry, moody, aggressive or any other unpleasant scenario…..
Would you even consider them living anywhere except with you???
I’m guessing not.
As I said in today’s blog in regards to passing judgment:
“Tread carefully with this one. Just because someone has a child that requires special care doesn’t mean she lost her sense of smell for judgment the day the child was born. EVERY parent makes mistakes regardless of the health status of their child. Remember NO ONE is perfect and no one wants to get good old Karma involved. She may make you walk a day in those shoes. It takes years of practice to build the stamina required for this particular type of battle. An inexperienced person could easily be dead in the first hour!
Am i narrow minded about institutionalizing my child. Yes, I am. I’m narrow minded when it comes to ALL THREE of my children because I love each one of them EXACTLY the same. As their Mother it is my job to NEVER give up!
As for the violence:
I truly believe if you dig really hard you could figure out what might be causing that. I have thousands of articles on various topics and would be glad to offer those, my friendship, and a listening ear to help in any way I can. Sometimes it can be something so simple. It is never too late to figure out something new. Look at our situation. It took us ten years to find out she has some deficiencies and overages in her blood in the areas of minerals, metals, vitamins etc. THAT is causing a problem with her amino acids.
She is improving. Small steps but nonetheless, improving. We have some other things going on medically as well as you know but, in the last 3 months she has started reading.
YOU are those children’s Mother. Not anyone else. You should never have to explain yourself to ANYONE. Isn’t it God’s job to do that?
My children learn something from Thing 3 every single day. She is a human just like them and deserves to be treated exactly the same.
One more thing before I go:
When my older two are in their 30’s and 40’s I’m sure they will have to help out with their sister. I’m not sure either one of them would have it any other way but, if I EVER catch them trying to get recognition for keeping their baby sister safe I will personally go straight to their house and whip their little tails. That child is their family. She’s blood. Plain and simple. They should WANT to help her not do it because they want kudos. Family sticks together no matter what the medical condition someone has. I also can not imagine either one of them (even now at 12 & 17) being “resentful” They are both fully aware of how much easier their life is compared to hers. Honestly, I think they are thankful they don’t have to struggle like her.
My husband and I are NEVER together at the same function. In 17 years I’ve never heard a peep from either of my kids. That’s because we started teaching them very early the true meaning of understanding and compassion.
Keep up the great work Tiffani. You are a wonderful Mother!
xoxo
Nikki
Wow! I can’t believe you commented on this post from last year, you promised you would come back to comment and you did. Boy, you are on a roll today lady and I love it!!!!! Thanks for helping others realize how we feel, you are very eloquent.
xoxo tiffani