Today I cried in front of Tiara’s neurologist as I described our life and Tiara’s current state.
Tiara is completely drugged most of the day, but not a good drugged. She is drowsy, irritated and frustrated and can’t stop eating. She has gained 30 pounds since April and crawls most of the time because getting up to walk is too much of an effort. Her blood pressure is elevated and she now officially weighs more than her Dad.
I desperately want to lower her medications but the doctor says it is not safe for me or her to do so at this time. She is only having 2 or so seizures a day but she is still very violent when the drugs start to wear off at the end of the day. Despite the lethargy her doctor doesn’t want to see an increase in seizures which would only make everything worse.
I can’t take her anywhere without a caretaker to help me. This depresses me beyond anything. I can no longer care my for child outside our home by myself.
I tried taking her for a walk on Saturday and she was so heavy in her wheelchair I couldn’t get it up on the curb. I was determined to make it happen and then a sweet woman offered to help as I was clearly struggling. I accepted her help even though that was really hard for me. I only took her 2 miles but I was sweating as if I ran a half marathon and she was ready to be done and almost injured me. So again, I can’t really even take her for walks anymore.
Her quality of life has declined significantly and it breaks my heart, but what breaks my heart more is the fact that I don’t feel safe leaving her for even a moment with Trinity or Tabitha unattended. I have instructed them both not to try and help her or play with her, it’s not safe. Let me help her, not them. Even when she hurts them, their natural instinct is to help her minutes later. I am so proud of them and their ability to love and not blame and yet it scares me. They know she can’t control herself and yet the pain she causes is real. So what are our options?
It appears after talking to her team, the options are limited. Change behavior medications and get more help to watch her in our home. That’s it. No one, including myself can come up with any other ideas. I know we are not alone in this struggle because there are lots of families dealing with these exact same issues as us, you just don’t know them. Our kids are struggling medically and emotionally and there is no answer but drugs and they don’t always work. It is heart breaking for everyone involved. The child, the family, the extended family and all those who know and love us. Not being able to help, not knowing how to offer support, everyone is affected.
So, no I haven’t been blogging, or walking or unpacking or doing much of anything except feeding everyone and surviving.
I have heard from some people that they don’t always understand why I continue to do what I do with Tiara and am I seeking the help that I need?
So here are a few things I may not have conveyed to you in the past but I assumed you knew, but you probably didn’t.
Tiara feels remorse after she hurts someone in our family. She can’t control herself and yet she feels horrible after an episode and apologizes over and over again.
I am in constant contact with her neurologist and psychiatrist via email and or phone.
She receives support from the Regional Center and IHHS and they always help us in anyway they can. Her caseworkers are amazing.
Tiara’s doctors at UCLA do research in Tuberous Sclerosis, her neurologist runs the TSC clinic and both are experts in the field. She has the best doctors on the West Coast.
So there you have it. Life isn’t great and because I try and stay positive, I haven’t really been in the mood to tell you how crappy things are around here. Despite all the bad stuff, we love our new house, Tabi is happy at her new place, I still love my husband and Trinity is growing like a weed. She is 5 foot 5 at 12 years old and I suspect will be the tallest of the Goff girls.
xoxo tiffani
Aww, Tiffani the end did make me smile and saw you shining through as always. I once again can’t even imagine all you do go through and wouldn’t even try to or give advice. Just want to say, you are in my thoughts quite often and as much as you may not want to hear or believe it, you are hero to me and many others around here. Hugs!!! xoxo 🙂
I really admire all you do for your family. You’re a GREAT mom!
Oh Tiffani… you always try to find the blessing in the storm… but sometimes even with that the waves can overwhelm. Please know there are many of us here, standing by you as silent sentries, hoping for the best… praying for the best… and we hurt when you hurt and rejoice when you rejoice…
You remain in my thoughts and prayers. I am always amazed when I see your beautiful, smiling face and I cannot even imagine the pain you carry inside. You are so strong, loving and determined. Prayers continue…xo
This makese sad, and amazed at the same time. So sorry there is not a better solution!!! Give her my love!! Miss Shelley
praying for you.
I am just so sad for you. When your world becomes so small and consumed, it really wears on a person. You look for the light at the end of the tunnel and it looks black. Is there any sort of inpatient respite care you can get to give yourself a break? Stupid question, huh, I’m sure you have explored all of your options. We put keypad locks on our pantry and paddle locks on our fridge as our guy was nearing 300 pounds. I get ‘taken out’ every time I open either one, as he is like a scavenger now!! Such a helpless feeling! The caretaker part of me wants to be able to fix this for you, the realist part of me knows it is so hard! I will pray for peace and strength in your family. You are all amazing people! Thank you for blogging. It gives others a sense of not being alone in this crazy world called TS. Big Hug from Minnesota!
You are such a great mom, exhausting your resources and yourself for the sake of all your children. I admire you and lift you up in prayer. May you get some relief for yourself and your strong TSC warrior. Us moms of TSC kiddos can only take life literally ONE second at a time. Enjoy those great seconds, drudge through some of the worst seconds and be strong the entire time. Be strong my fellow TSC mom, we got this!
You’re an awesome mom!
Tiff – Sad there is no easy solution here. I wish I had some solid advice to give you but you always amaze me by enduring the worse of storms. I can only hope and pray that things get better soon. Hang in there.
Oh Tiffani I don’t know what to say except that I’m so sorry. I’m sure you are all heartbroken! I wish I could help somehow. For what it’s worth, I’ll be praying that this is just a blip and life will get better for you all very soon,
Believe it or not sometimes tears give me strength to keep fighting!
I love you and your family with all my heart.
It’s okay to cry…
❤️
So sorry that life is sucking right now. wish there was a magic fix for TT. Glad you are in your new home but its obvious you are depressed and exhausted, You need a get away but you have a child that no one else could manage. my heart feels so bad for you because I know you are pushing as hard as you can and you just want TT back. God bless and I am praying she will calm down. Love u all xx
Tiffani, you are a strong women with a wonderfully soft heart. You inspire me with your journey. I pray for you guys and hope that there is some sort of answer lurking in the clouds that will help bring you all some peace. Please let me know if I can help in any way! xo
Oh Tiff! I am so sorry about what is happening! I know that Tiara is loving and can be so much fun and it is sad that you are not seeing that part of her very often right now. I pray for you all the time and don’t know how you can do a better job than you are doing already. You are such a patient, kind and loving person. I wish I was there to give you a hug. I love you! Mara
Very sorry for what you’re going through. I know I’ve mentioned this in the past and while I’m sure it’s met with a wince and even shock, I don’t know that restraining Tiara would be a bad thing. Because you and the family are breaking down and what good is that? Tiara herself shouldn’t have to feel the guilt that comes after her violence. You all, including Tiara, need to be protected. Why not simply arm restraints that allow her freedom/range to use her beloved iPad and to eat while not giving her the range of motion to flail those arms with force against her family. I know it sounds so politically incorrect, yet what do you think happens in a mental health facility when a patient is a danger to themselves and others? It’s not punishment, it’s restraint – to keep everyone safe. Regarding her eating, I don’t know that you could – or should – do anything there. Giving her less food will likely increase her frustration and anger and it some ways, it’s all she has that brings her enormous pleasure. Not saying that’s good or healthy but it’s certainly a minor point to the violence. And…just wondering…you know those motorized wheelchairs? I wonder if you couldn’t find one with controls that are either on the back of it or that can be adapted to the back of it (so you can run them)? I’m sure she’d qualify and it would open your world up so you can still have those fabulous walks and get some fresh air.
Tiffani, you came to mind out walking the dog today. I’ve been so busy and had some children drama that I hadn’t checked in with you for a while. I am so, so sorry and Tiara’s decline. I don’t know what else to say but that I will keep thinking of you and your girls (and hubby) praying for wisdom and strength and peace.
I know you must be emotionally exhausted. Hugs.
And new house? I’ll have to search back to find out about that. Love
Checking beauty. Hope you are okay.