The Sweet and The Salty

Special Needs Parenting Is Hard, and Its Ok to Say So

By Jody July 1, 2013

I am exhausted. I am weary. I am tired.

Champion is a couple of months shy of turning four years old.

It has been four years since I have gotten a full, uninterrupted nights sleep. Its been four years since I’ve gotten to lay down before midnight. Its been four years since I’ve gotten more than a few hours of sleep at a time.

I am so very tired.

Parenting a child with special needs is challenging stuff.

It is hard to explain to others who aren’t in it the nuances that occur that disrupt almost every aspect of life.

It’s hard to explain to family and friends how difficult it is to go without sleep for this long and still try to be very present for an inquisitive almost four-year old who needs me to do and be everything for him. I am an extension of his hands, his feet, his legs. I am his voice.

If I didn’t feed him he wouldn’t be able to eat. If I didn’t get him out of bed he wouldn’t be able to get up. Right now, as things stand, if I don’t do something for him, there’s no way he could do it on his own.

Day in and day out I, along with countless other parents of children with special needs who are doing the same for their children, am my son’s everything.

It is bone chillingly exhausting.

Yes there are many many many beautiful rewarding moments as Champion’s mom. Just as being his mom has exhausted me to my core, being his mom has also changed me and my view of life for the better at the core.

Being Champion’s mom has defined me and refined me as a person more than any other experience. I could go on and on about how much being his mom is a blessing and a gift.

However, and this is a big however, as much as a gift it is being a parent to a child with special needs, if not careful, this role can become dangerously draining and it needs to be okay to talk openly and honestly about how challenging it is.

Awhile ago I participated in a small group bible study at a church. It was a very good small group where we were able to talk and share about the challenges we were facing in life. I really enjoyed the group and it turned out to be very therapeutic.

However, at the beginning when I began sharing about Champion and some of the harder things I face as his mom, one of the other women responded and said “Yeah but isn’t he just a blessing and aren’t you learning so much as his mom?”

And the answer to that question is yes, he is. Yes, the majority of parents who have a child with special needs would say that their child has changed them for the better, that their child teaches them about life and love and that they are blessings.

But, with that, parents of children with special needs need to be able to express and be understood that It. Is. Not. Easy. And that when we talk about how uneasy it is, that we are not downing our child, that we’re not ungrateful to be their parent, and that we’re not unhappy with the child we’ve been blessed with.

We are simply saying: This is hard, I need someone to understand that, and I need help.

Let’s Talk: What situations do you find yourself in that are hard to articulate to others how much of a challenge it is? How do you handle expressing to others that you need help? Is it easy or difficult for you to ask for help?

Photo Credit: La Melodie

Linked at : Pour Your Heart Out, Fellowship Fridays, Love That Max: Special Needs Blogger LinkUp

From My BookShelf: May 2013

By Jody June 25, 2013

From My BookShelf: May 2013 A Monthly Feature on www.thesweetandthesalty.com Come find some new books and share some of your favorites

Welcome to From My BookShelf for the month of May 2013. From My BookShelf is a monthly feature where I share the books I read during the month and a short review of each book. My prayer is that you will find some great reads from my list and in return that you’ll share some of your favorites with me 🙂

**The links in the post are my affiliate links. All reviews and recommendations will always be 100% my honest opinion. For more information please see my disclosure policy. **

Books I Read In May

This month I read seven books. It was a glorious month of reading for me as my love for reading was re-kindled as I spent less time on Facebook.

Coincidently (or not so coincidently) one of the first books I read this month was: Unfriend Yourself: Three Days to Detox, Discern, and Decide About Social Media by Kyle Tennant.

Description

The book is designed to be read over a three day period during which the reader stays logged out of all social media sites. The purpose is to give the reader a chance to re-think their relationship with social media and others. At the end of each chapter is a “challenge” to do, involving more face to face, real life interaction.The book examines social media in the context of Christian Theology and Doctrine.

Review

I found it to be a really interesting read and it affected me more than I realized. I have spent drastically less time on Facebook since reading this little gem and in turn have seen some great benefits from it. In the end I decided not to completely forgo social media as it is a great way to stay connected to people I normally wouldn’t have the means to keep up with, however this book did help me to spend a healthier amount of time (which for me means way less) time on Facebook.

I recommend this book as a quick, thought provoking read. I believe it is useful to help one examine their use of social media in the grand scheme of life.

The next book I read was Every Secret Thing (Legacy Series) By Ann Tatlock.

Description

Every Secret Thing is a Christian Fiction book about a woman returning as a teacher to the preperatory school she attended as a girl. She returns to an old love, memories, and a mystery surrounding one of her former teachers that was never resolved for her when she was a student. She also forms a friendship with one of her students and they both learn some lessons from each other.

Review

I enjoyed this book, however it wasn’t a complete page turner for me. I did, however, always look forward to picking it back up when I had a few moments to spare. I think this is a good read if you’re looking for something with a good message and intriguing story that is on the lighter side. (The subject matter dealt with in the book is a heavy topic, however the way the author has written it, it has a lighter feel to it.)

A few months ago I read A Room of My Own (Historical Fiction Best Sellers) by Ann Tatlock, the same author, and that one was a major page turner for me. It’s a coming of age story that takes place during the Great Depression. Definitely recommend that one.

I also read Tiny Titan – One Small Gift (Journey of Hope) by Ann Yurcek

Description

Tiny Titan is the story of the Yurcek family as their world was turned upside down when their daughter Becca was born with a very rare genetic syndrome called Nooman Syndrome. The book chronicles Ann Yurcek, Becca’s mom, as she comes to grip with her daughter’s diagnosis, becomes her greatest advocate, and as the family plunges into poverty and back out again. The effects on the family as a result of Becca’s special needs, as well as the effects on their finances and faith are all discussed and shared candidly

Review

Reading books written by moms of children with Special Needs is always a moving experience for me. I can feel the pain expressed from the heart of the authoring mom as they write of the beginning of their journey. That pain and anguish of soul is a familiar one to me. In this book Ann Yurcek did a beautiful job expressing what finding out her child has a life altering diagnosis was like. Throughout the book Ann continues to return to the theme that she started out as “just a mom” and how that definition of being a mom grew for her as she struggled with the challenges her family faced as a result of her daughter’s extreme needs. This book spoke to my heart and soul as a fellow mom of a child with a rare genetic syndrome and it was hard for me to put it down.

I highly recommend this book. Its a memoir but reads like a novel. This family’s perserverence is very inspiring and moving.

I ended the month reading the Chronicles of the Kings Series by Lynn Austin.

(Technically I finished the last book of the series in June but included it this month since it fits with the others)

Description

The Chronicles of the Kings Series tells the story of King Hezekiah and his son Manasseh. The first three books share how Hezekiah came to be king, the incredible losses and victories he faced and the journey of his faith. The final two books share the story of King Manasseh and chronicles his reign as King of Judah. The books, considered biblical historical fiction, stay very close to the books in the Bible from which the series is derived. The prophet Isaiah, as well as Elikiam, King Hezekiah’s right hand man, and his son Joshua are all characters in the series as well.

Review

These books are among some of the best I have ever read. For me, they helped the Old Testament of the Bible to come alive as truths hidden in history were unlocked. Historical fiction is one of my favorites and biblical historical fiction is icing on the cake. These books are well written too. Lynn Austin is one of my absolute favorite authors. I always feel inspired after finishing her books and this series was no different. She stuck very close to the story as told in the Bible and she has also done her homework, having done extensive research on the customs and way of life during the time period this series takes place.

Reading this series was a transforming, transporting experience and I highly recommend these books!

The majority of my reading is done on my Kindle Paperwhite, which I love! I get A LOT of free kindle books by getting daily updates from ereadergirl.com. Don’t have an ereader? You can also download the Kindle Reading app for your PC, tablet, or phone from Amazon.

Let’s Talk! What are some of your favorite books? What good books have you read recently and recommend? What are your favorite types of books to read? I’d love to hear your answers in the comments!

Linked Up at: Fellowship Fridays, Twitterature

Spring, A Re-Kindled Love, and Facebook

By Jody June 3, 2013

Spring is normally my favorite time of the year.

I love the clear skies, the wispy clouds, the beginning of warm nights and waking up to the smell of freshly cut grass, one of my favorite scents.

I love going from wearing pants to capris and skirts, from wearing sneakers to sandals and flip-flops.

I love the anticipation in the air of new beginnings as school years come to a close, graduations mark the beginning of new paths in life, and times of rest and rejuvenation are around the corner.

Spring is a beautiful season.

This spring though is not one that goes down in my book as one of my favorites.

It began with a miscarriage, crescendoed with Champion being denied his feeding therapy, and is tapering off with Champion recovering from a minor surgery and working on sleep issues.

I’m still in pants because I haven’t shaved my legs, still in sneakers as my toenails need some tending too, and haven’t been outside much to enjoy the warm nights or the freshly cut grass smell.

But...in the midst of those challenges this spring did re-introduce me to a long-lost love of mine.

And it feels like I’ve rediscovered a lost part of my soul as this love of mine has been re-kindled.

Special Needs Blogging

And that love, my friends, is a love for reading.

And not just reading but READING, like get lost in a book, characters become my friends, don’t know what to do with myself when the book ends READING.

And it has seriously helped me to relax more. To sleep better. To have a true break for my heart and my mind without even leaving the house.

I have fallen completely, deeply, profoundly back in love with reading and the power that stories and well-developed characters have. And I am not letting it go this time.

How do I find time to read? Good question.

I used to think that I didn’t have the time, so I just didn’t do it.

But then I realized that I was spending time doing something every single day that was not rejuvenating me, seemed to be draining me more, and was not giving me the break my heart and mind needed.

So during the month of May I took a break from this thing that has become unhealthy for me, and in return I read seven books.

I almost hesitate to admit what it is that I swapped out reading for, because A) I’m embarrassed to admit I spent seven books worth of time doing this and B) I know some people are not negatively affected by this activity but for some reason I really am.

The way I found time to read was by reading the times that I would normally go on Facebook.

Yep that’s right, I was spending seven books worth of time looking at what other people were doing, trying to come up with something about my day to share, and then eagerly waiting for interaction.

By not spending my time doing the above and instead filling that time with reading, I feel so much more refreshed, less anxious about life, and just healthier in general.

So as spring comes to a close and summer is approaching, I am looking forward to continuing on this trend of reading more and Facebooking way less (like hardly at all).

And I am looking forward to sharing with you some of my favorites books I have recently found! (And hearing suggestions from you on some books to check out.)

Let’s Talk: Do you enjoy reading? If so what are some of your favorite types of books to read? What barriers have you had to overcome to make time for reading? As far as social media, how do you use it (or not use it) in a way that is healthy for you?

Photo Credit: Promanex, Douglas R Witt, YLev

Linked at: Pour Your Heart Out, Fellowship Fridays, Love That Max