Let's Get Real
Life isn't always all butterflies and happy songs. Like most people, our life can get ugly and we don't always show that side of ourselves to others. I read an article yesterday about "fakebooking" and the refreshing truth it discussed how we all, from time to time, edit the "suckage" from our lives and act like we have it all together.
Most days I am happy and I do appreciate life and what has come my way. I share with others the good that I see and how much I try to take it all in and make the most of everything. We know we are lucky in so many ways but let's get real, we're human, we get angry, ticked off, frustrated, hurt, and overwhelmed too.
Today's a good day and those are the days a therapist once told me are the times we see things most clearly and the time we should use to make the most of things because we aren't in crisis mode. So, I'm taking the time to tell it like it is, with a clear mind.
I read a message from another mom that said she was so over all the frustrations that came with having a child with special needs. It's not the child that frustrates us, of course, it's the other day after day ridiculousness that becomes a part of our lives. In the end, we always fight through these endless tasks, because we know it's what is best for our children. But in the midst of it all, we HATE it sometimes.
For instance, I can't stand the cost of diapers for people who have outgrown the "Pampers" kind and changing them over and over again, especially in the middle of the night when I can't keep my eyes open. I especially can't stand that insurance won't cover them, deeming them "medically unnecessary" and that they are so cheaply made. I can't tell you how many I have ripped over the years.
I can't stand the cost of medications and how many Livy has to take. Her med and feeding schedule is better than what it has been in the past but it's still absurd. It starts at 6:30am and goes on every few hours throughout the day until 10:30 at night. It is constantly there to keep us thinking and planning and worrying. Never mind trying to remember which meds are up for refill and trying to figure out where to get them and at what cost.
I'm forever changed because of all the lifting. The damage had already been done long before we got smart and got a lift and wheelchair van. Sweet child will only continue to get bigger and it drives me crazy that I can't pick her up and hold her as easily as I once did. I dread the day I won't be able to do it anymore.
Equipment. It's taking over our house and we rearrange our furniture to accommodate. It's in closets, in drawers, in corners, in the middle of our family room. And this stuff isn't small and easily movable. I'm talking stander, gait trainer, lift, AFOs, wheelchair, splints, immobilizers, braces, floor mats, syringes, tubing. It is an endless array of extra stuff. Necessary stuff but not typical have around your house kind of stuff.
Then there is the staring. I mostly look past it. I get it. We all look at the things that intrigue and those things we don't understand or see very often. I do it too. It's just that it gets to you, ya know. Day after day. At the store, at the park, at the library. We know people are looking. I just like to think to myself, yeah, they're looking at those cool hubcaps.
Handicap parking. Where do I begin. Well, I have to admit, before Livy, I didn't think much of it. I just knew it was a spot that I wanted, because it was closer and available. But now, it's a part of our every day life. I love taking Livy out to the store with me. It's good for her and for me too. But I can't tell you how many times I can't find an available handicap spot. Our van has a ramp and we can't just park anywhere. I need that extra space to put the ramp down so that I can get Livy's wheelchair out. So many times I have taken her with me only to circle over and over and finally give up because a spot isn't available. And don't get me started on people who abuse handicap spaces.
Endless decision making about what medications to start, to wean, to end. Jon and I have had more talks that I can count about what would be best for Livy. Let me just say that Jon and I see eye to eye on most things, but when it comes to medications, we don't always agree. I suppose it's a good thing because it allows for two different perspectives. But it has caused some serious discussions and frustrations between us. Let me just say it again, I can't stand the medications.
I'm really just beginning here...
Insurance. There really isn't much to say except that it is a love hate relationship. I can't imagine what the total cost of Livy's medical bills would be at this point. I think in her first year or two alone she hit the max. I thanked my lucky stars then for insurance. But also, I hate them. They deny Livy her right to coverage that she deserves. I don't know who they think they are telling us what is medically necessary for our daughter. Especially when we have the approval of her doctors, people who have actually met her and know her medical history. I am sick of writing appeals, waiting on hold, being denied, over and over and over again.
Sleep. I need it so badly. Jon and I both are so sleep deprived sometimes it's ridiculous. It's like we've had a newborn for years. Eight years. Poor Livy can't help it. We are convinced the medications and/or the simple design of her brain steal her ability to get decent sleep. It is so rare to get a full night around here. It kills us to have to try to sleep knowing she is wide awake in her bed most nights. We try so hard to lay with her and calm her. On so many occasions we have had to say, "I am so sorry Livy, but I have to go to bed and have enough energy tomorrow to get through another day". And we will try to go back to sleep in our own bed, but it ain't easy when we know she is just lying there.
And then there is the constant worry and fear and on your toes feeling we have most days. Epilepsy is the worst because it's like a ticking time bomb. You never know when it's going to go off. We know Livy so well that even the tiniest change in her facial expression or behavior puts us on guard. Well, me more than Jon. He has it so much more together when it comes to this. I just never know what the day will hold and how Livy is going to be when she wakes up. I've gotten better about it but all it takes is one strange stare or twitch to get me psyched out.
Sometimes I would just like to have a day of freedom. Freedom from the worry, the responsibility and the constant schedule. I want to just jump in the car without worrying about what I need to bring, where I am going to go, and how long I'm going to be there. I want to just grab my purse and my kids and go.
Alright, that's enough, I'm over it. I just wanted to share that behind the day after day of great postings, which most times are the reality, there is the dark side too. I just don't want it to take me over.
Here is the link to that great "fakebooking" story for when you have more time to read it. Sorry I just sucked up all your time to read it now. Thanks for listening and letting this momma get it out.
I read the other article and laughed my way through it. I read yours and felt pain for all you are going through. I'm so glad you were able to put everything into understandable feelings. Would imagine that putting it on paper was cathartic. Love you for your honesty and bravery. Long distance hugs to all of you.
YOU and your whole family are so strong. Livy couldn't be in better hands. God was looking for all of you when he put your family together. I can only imagine the day-to-day routines you have to live by and we know that is the reality of your life....the good, bad, and ugly...it's all there. We are all only human and there are days you can scream, cry, and hate the world and you deserve to be able to express that. You will make a difference not only in Livy's life but for all of us too who know you and respect you. You are one of the strongest people I know and you have a couple of lucky little girls!! HUGS
Wow. Even though we know Livy's story pretty well, I don't think most of us have any idea how much you go through every day. Thanks for letting your guard down and sharing your feelings in such an honest way. Please let us know if Betsy & I can do anything for you guys, anytime.
This is most well written "real" piece of writing I have read in a long long time. What courage to put into words the real, daily, relentless struggles parents of special needs children deal with. Not to mention the toll on your own health, marriage, social life and the fact you have another child with needs of her own. Thank you so much for this. You aren't alone in your frustrations and now I know I'm not either.
Just a quick thought while running out the door... here in Canada, Easter Seals covers the cost of diapers for children over age 3. I'm sure Easter Seals isn't a Canadian organization so maybe try browsing their website for information?
FunMumX3 - I did check in with Easter Seals right after I saw your comment and this was their response: "Thank you for your inquiry to Easter Seals Florida regarding diapers. Unfortunately, we do not have funds available to assist families with this very costly expense. We recommend that families reach out to Catholic Charities and Metropolitan Ministries. Both of these non-profits often have diapers donated that they provide to families. Sometimes food pantries also have diapers but not always consistently." It must not be something that is provided in the states. Thank you for your help! I will just keep searching Allison
First, I am so happy about Hailey's award. I voted for her every chance I got as I really felt she deserved the recognition! Second, my partner and I would really like to help in our own small way by purchasing some of the diapers that Livy needs. My partner worked in special education for many years and we both worked teaching aquatics to these loving children and adults. Please let me know how we can get these for Livy. All of us need to lean on others from time to time and we would be so honored to do this for all of you. Your family gives so much to others so we would like to give back to you. Feel free to vent any time, we are listening!
Thank you for sharing our honesty. I read every word and valued every word you said. You are so strong, every time I read your blog I just think that you are amazing and Livy is so blessed to have such a committed family- those feelings include what you expressed in the post. It is real, raw and honest. I can not relate at all but it helps me to understand even more what a day in the life of Livy is like (and that includes you obviously!) I still respect you more than anyone that I have ever met. Your dedication to Livy, Haley and your husband is just down right incrediable!
On a side note- check out the app/website : https://new.lowestmed.com/
this isn't an advertisement or anything but the app lowestmed helped me to fine a cheeper drug store for my medication! thought it couldn't hurt.
THANK YOU for being so real. People need to hear. Our son has autism but the needs are so different. I'm glad you took the time to share this.
Allison and Jon:
We do think about your struggles and we DO admire your family. I see Hailey in the hallways and my heart always overflows with joy. She reminds me of all the special days we spent together in the classroom, days Ivan and I will always remember. Your family will always have a special bond with us. Thank you for reminding us of your constant struggles. We know you have them-- but we are there to listen whenever you need to vent.....or whatever.
Thank you for being open and sharing your struggles. It helps your friends understand more about what challenges you face, and really bolsters our perception of just how strong and amazing you and Jon are. Livy and Hailey are so lucky to have you. Hang in there, and please call or write anytime you need to talk. We love you!