I’m Back…and What We’ve Been Up To

It’s been a long time since I’ve written here.  A whole lot has happened since my last post.

Here’s a bit about what we’ve been up too :-)

First thing, Champion turned four years old! This means he has doubled the length his life was predicted by doctors to be, and I know he has many more years of birthdays to celebrate.

In addition to reaching four years of age he has also accomplished another huge milestone. He is now officially a nose picker and I could not be more proud of him!

The amount of effort and coordination it takes for him to break muscle tone at his elbow, isolate his pointer finger, bring his hand to his nose, accurately find his nostril, insert his finger and keep it there is something I didn’t think we’d ever have to deal with with him.

Celebrating the little things definitely keeps me from being sad about some of the bigger things.  And of course prayer helps with that too :-)

Four years old Miller Dieker Syndrome prayer works

In addition to turning  four and becoming a nose picker, Champion officially became a preschooler.  A preschooler in a general ed class to be exact!

Having him in school has been an amazing experience.  We’ve seen jumps in his development since starting  and we are really happy with the services he’s receiving.

We are also thrilled with the staff who are working with him.  He qualified for a one on one aid and I feel so comfortable dropping him off knowing that she’s there with him helping him along throughout the day.  School has been a really good experience (except the whole germs and lots of colds part of it.)

It’s really been quite busy these past several months since I last sat down to write here. It’s actually been about nine months I think since my last post.  Wow a lot can happen in nine months.  I mean nine months is the amount of time it takes to grow and birth a baby.

Oh wait,  that’s the other thing that happened while this blog has been quiet!  In addition to turning four, learning to pick his nose, and starting school, Champion became a big brother!  That’s right, we had a baby!

This past April we excitedly welcomed a baby girl into our family!  She came suddenly, very suddenly, a few weeks early and landed in the NICU.  She is now home and doing wonderfully. It has been an amazing experience to watch Champion fall in love with his little sister.  He is such a good big brother and we are excited to watch their relationship grow and develop as the years go on.

Whew, these past few months have definitely given us lots to be grateful for.  I’ve really missed writing here in the midst of all our changes.  It feels good to be back.

I look forward to continuing to share more regularly about our journey as we raise our miracle in the making son and now his adorable sister (with her own miracle story!) as well :-)

Thanks for reading!  See you soon :-)

Why and How I’m Making Exercise a Priority: Part 2 & A Giveaway

This post contains my affiliate link. I only recommend things I really like and I like what I’m recommending today so much I’m also giving away five of them.  Just leave a comment at the end of this post to be entered in the giveaway!  (Read Disclosure Policy here.)

This is the “How” part.  Read the “Why” part here.

I know exercise is good for me.

I know it helps with energy, mood, sleep, weight, general overall health, pretty much all the areas I could use some help in.

I know this, but actually putting what I know into practice–yeah that wasn’t happening for more than a few days out of the month, if that.

Until, I came across this book: “Do What You Can” Plan: 21 Days to Making Any Area of Your Life Better

Within the first chapter Holly Gerth, the author of the “Do What You Can” Plan , asks the reader to choose a goal to work towards. I chose exercise. She then encourages the reader to take that goal, think of the minimum amount that you want to do and then cut that in half.

What?” I thought to myself.  “I want to do 15 minutes as my minimum, half is 7.5 minutes which is like nothing.  How is that going to even be beneficial?”

But the more I thought about it the more sense it made. I really want exercise to be a life long habit and not something I start and can’t (or won’t) keep up with.

So I decided to give it a try to do ten minutes most days.  I can find ten minutes a day.

We have a treadmill in our bedroom (we bought the floor model from our local Sears and got an amazing deal on in it) so I really have no excuse.  So now I  put on some work-out clothes, stretch a bit and get to walking.

I don’t worry about a shower after, that will add to much time and I’m not working up that much of a sweat in my ten minutes.  (However if I did go longer and got really sweaty I simply use a cotton swab with rubbing alcohol on it under my armpits, it does a wonderful job getting rid of sweat smell,  then change clothes and I’m good to go).

Making it as simple and un-time consuming as possible has been key for me.

I plan to increase the time frame in the coming months to where I’m really getting the full benefits from it, but for now I’m making it a priority without making it impossible for me to do.

Surf Shelf, special needs parenting, exercise

(SurfShelf on Treadmill.  A great way to turn a treadmill into a “walking desk”. Walk while you read, type, or watch a program)

Four simple ways  to get started with exercise:

1. Pick three of your favorite upbeat songs.  Play them and dance along!  This is a great, fun, mood-lifting way to get exercise in.  Kids can participate too (or you can do it in the privacy of your bedroom and really go all out!)

2. Take a walk outside.  (I was very inspired by this comment from Brigid to do this more often).  It doesn’t have to be super long, just enough to get that heart rate going as you’re starting out.

3. Walk in place for ten minutes.  This can be done anywhere, while cooking, doing dishes, watching TV etc.  This is a good way to get the blood flowing and your heart rate up without having to do too much preparation.

4. If you’re at a strip mall (like grocery store etc) park far away from the store and before you go in the store walk up and down the strip for about ten minutes.  Then do your shopping.

Additional Tips:

  • Whatever you choose to do, make it fun.  If it’s not fun and you dread it, you most likely won’t keep up with it.  Make it fun and keep it short at first.
  • Start slow.  Don’t try to jump into a five days a week, hardcore thirty minute program.  Work your way up to it.  Start small and make it a habit.  As you see the benefits and you’re keeping up with it on a regular basis then start increasing the time as you can manage.
  • Slowly work it into your schedule.   As you exercise your energy will increase and your sleep will get better, which will make managing all you have to do easier.  As you see the benefits and you have more energy, start increasing the time and rearrange your routine as necessary to make room for it.

Giveaway Has Ended! 

And finally, I really recommend “Do What You Can” Plan: 21 Days to Making Any Area of Your Life Better by Holly Gerth.  It was a quick but very impactful read for me and really helped me to get jump started in the exercise arena. I plan on re-reading it in the future to help me establish some habits in other areas and reach some other goals of mine.

Does The “Do What You Can” Plan sound like something you’d want to read?  If the answers yes, just leave a comment on this post and you’ll be entered for a chance to win ONE OF FIVE copies I’m giving away.  (I always think it’s super fun to win a little something so be sure to enter and be blessed by this serious gem of a book :-)!)

Giveaway ends Tuesday August 27th at 11:59 PM, Pacific Time.  I’ll update this post by Thursday August 29th with the winners.  The book will be in kindle e-book form.  (If you don’t have an eReader you can download the kindle reading app for your phone, tablet, or computer from Amazon.)  I will also email the winners and if I don’t hear back in 24 hours another winner will be chosen.  

If you’re reading this by email or in a feed reader click here to come to the site and enter for your chance to win!

 Debra Lee, Brigid and Wani, I hope you enjoy the book!  You should have received an email with a link to download it!  Enjoy :-)!

This book is definitely one of my favorites, I hope you enjoy it too!

*A doctor should be consulted prior to beginning any exercise regimen.

Why and How I’m Making Exercise a Priority: Part 1

“We are going to have you change your diet and exercise but in the meantime you need to take one aspirin every day. You are at a high risk for a stroke or a heart attack.”

I was shocked when I got that report from my doctor.  An aspirin regimen?   High risk for a stroke or heart attack?  Wow… I had no idea my health was in that type of shape.

special needs parenting, exercise

Yes, I could stand to lose a few pounds, especially around the middle area, but I had never gone above an average size in clothing. I was very athletic as a teenager and hadn’t been to terribly inactive in my adult years. Yeah my diet could have been improved but it wasn’t too bad. I didn’t think I had let my health go to much…but according to this test I had.

But then I realized that I wasn’t factoring in the fact that I am a mom to a child with special needs.  And the added stress and tax on my body parenting a special needs child brings.

I firmly believe that it was the numerous sleepless nights, the stress of trying to get my child to gain weight, him constantly throwing up, the numerous appointments, the pressure to do “therapy” with Champion every waking moment, the phone calls, and the list could go on and on that put my health in the shape it was in.

Those things and the fact that in the thick of it all I wasn’t paying my health the attention it needs.

As a mom to a child with special needs, we know that our health is important. We know it, but in the midst of the health needs of our children, our own health is so often overlooked. And understandably so.

The amount of care our children can require of us can push us past physical, mental, and emotional limits.

Finding time to take care of ourselves is challenging in and of itself, but then having the energy to do something about it in the time we do find, even more challenging.

special needs parenting, exercise

But as moms of children with special needs we have got to make our own health a priority.

Because our children really need us to be healthy for them. They need us to live a long life and be there to take care of them. They need us to have energy to spend on their needs. They need us to be able to meet their needs. And unless we are healthy ourselves we can’t do or be all that they need us to be.

So much easier said then done though.

Even after I got the report from my doctor, actually taking care of myself still was not one of my priorities. I knew it needed to be and on paper it was a priority, but in reality in our day-to-day lives it just wasn’t happening.

When I did have a few minutes to myself expending additional energy exercising was not the way I wanted to spend it.

Cooking a healthy home cooked meal, not something I was going to try to do when I was absolutely exhausted from a sleepless night, running around to therapy and doctors appointments, and struggling with g tube feeds.  No way, take out it was again and again and again.

special needs parenting, exercise

Recently though it clicked, and I realized that making sure that I take time to take care of myself is a form of taking care of Champion.  And that has motivated me.

So lately I have been making sure that exercise is more than just a priority on paper and that it is actually something I am following through with doing on a regular basis.  And I am seeing benefits from it.  And so is my family.  And it’s making a big difference in how I feel.  

I’d love for you to come back next week  for Part 2 where I am going to share in more details how I am actually making exercise happen and some strategies to get started and keep it up.

But before I go today, I just want to encourage every mom of a child with special needs (and any moms period) who are reading this..Please please, if you are not doing so already, do what you need to do to care of your own health.

You are so valuable to your family. You deserve to have energy and to feel good physically.

Life is so much better, even with the day-to-day challenges I know you face, when you just plain feel better. This is new for me, making sure I am healthy, but I am seeing so many benefits. And I desperately want other moms like me to experience these benefits also.

I look forward to seeing you next time and us getting healthy together!

Let’s Talk:  What barriers do you find keep you from exercising?  If you do exercise regularly what has been your motivation to get started and keep up with it?  

Adaptive Bike: Yes! {Or Maybe Not}

The sun shone brilliantly as its rays danced warmly across our skin.

A soft breeze gently blew the fresh fragrance of fully bloomed flowers our way, bringing the delightful scent to our attention. The hum of children joyfully playing caressed our ears, evidence of the happiness around us.

We looked lovingly at each other as Champion eagerly awaited his turn, excitement mounting in us all as his opportunity to fulfill this childhood dream danced before us. The excitement in the air crescendoed as it became his turn.

We watched eagerly, wrought with anticipation as Champion gripped the handlebars and took off pedaling, joy radiating from his face as he deftly maneuvered around obstacles, peals of laughter coming from him and all of us as we watched him in triumph.


Here’s what really happened.

This past Saturday we had the awesome opportunity to have Champion try out an adaptive bike. We had heard that another family had put together an event for families to come demo bikes.

adaptive bike, special needs

I thought, “How awesome, that sounds like a lot of fun”.

Normally I would have said no since it was last minute but since I’m working on throwing off discouragement and getting out and about more, and since we recently decluttered and organized, making getting out and about easier, I eagerly called and set up a time for us to stop by and have Champion give a bike a try.

We woke up early that morning, took Champion to an appointment to get his braces adjusted and then headed to the park for the event. We had a great time interacting with and meeting some amazing families as we waited for Champion’s turn.

We were already brainstorming how we could creatively finance the purchase of one of the bikes because we just knew he was going to love it.

adaptive bike, special needs

Finally his turn came and we eagerly set him on the bike, anticipating the fun he was going to have riding around.

He instantly started crying.

And not just whimpering a little bit, but full on crocodile tears with screams overpowering the sound of kids playing in the playground next to us.

My husband and I started clapping for him and cheering him on, telling him he could do it, that it was fun. The other parents took their cue from us and cheered him on too.

adaptive bike, special needs

We tried him on three different bikes all with the same reaction.

We tried with braces and without braces. We tried pushing him from behind, forcing his legs to pedal. We held his hands to the handle bars with our hands over his, forcing him to hold on. We used styrofoam between his legs, forcing them open thinking that would make him more comfortable.

And then finally, we stopped.

It dawned on us that this was something that was supposed to be fun for him, something we wanted him to enjoy, and he clearly wasn’t and he was trying to let us know but we weren’t listening.

We’ve grown so accustomed to forcing him to do things from years of therapy that we had trouble recognizing that we were trying to force him to enjoy something that he just wasn’t.

We took him off the bike and let the vendor know we weren’t interested at this time. We left with a quote and the knowledge that he was actually a couple of inches to small for even the smallest of the bikes so it wouldn’t have worked anyway.

But we also left with the knowledge that we really need to learn to listen to Champion.

We were projecting onto him what would be enjoyable for us as parents to watch him do, and not taking into account how challenging it would be for him. Because of course what child doesn’t enjoy riding a bike? Never mind the fact this was his first time ever even seeing one.

We were so busy trying to make the experience like the scene at the beginning of this post that it took awhile for us to grasp the fact that reality just wasn’t lining up with our vision and that that was okay. And that us trying to make it that way wasn’t the way to go.

So for now we’re holding off on the adaptive bike. Its definitely something we want to explore for him in the future when he’s the right size and when he shows an interest in it.

But for now we learned a good lesson and we’re going to work on finding recreational activities that he enjoys and looks forward to doing.

I think he thinks that’s a good idea.

special needs blog, Jesus Heals

Let’s Talk: Any similar situations?  How do you handle it when reality doesn’t line up with your vision of something? 

Linked with: Pour Your Heart Out,  Special Needs Blogger Weekend Link Up

Decluttering Fest: An Annual Occurrence

This past week was my annual (sometimes semi-annual) decluttering fest. About every six months to a year I get an itch  to go through our entire place and toss toss toss (really we donate it, but you get the idea).

Being organized is something that is really important to me, but its something that I have to work really hard at.  It doesn’t come naturally to me at all, therefore I have learned to take advantage of the times when I do feel the urge to purge (sorry couldn’t help it :-) ) and make as much headway as I can.

In the past I have tried to set a schedule such as every May and October to declutter but that just didn’t work. I’ve learned to just rely on myself to become overwhelmed at some point within the year (year after year it happens) and then I’m motivated to just get it done.

When I declutter and organize my focus is always functionality first, aesthetics a distant second.   In other words, the outcome may not always look the best, but it’s always what works the best for us.

Here’s a few before and after pictures from my most recent decluttering venture.

We live in a two bedroom one bath converted condo. It’s the perfect size for us, but not for having an abundance of stuff.  We had car seats and bases stored in both bedrooms, a crib mattress in the middle of one of the bedrooms and other stuff sitting unused and taking up precious space throughout.

decluttering, organizing

Our biggest project was clearing out our pretty good sized storage closet and packing up all of Champion’s baby things (that we have high hopes of eventually being able to use for another baby or two or three.)

We got rid of a good amount of things that we just knew we weren’t going to use and were able to fit what we’re keeping in the storage closet. This instantly freed up space in the bedrooms, making them feel more organized as well.

Here’s our storage closet now.

decluttering, organizing, special needs

Another problem area that we tackled was our entryway.

This is what greeted us (and any guests who came by) each time we came home.

decluttering, organizing, launch pad

We like to have a “launch pad/area” where we keep items that we take with us whenever we leave the house and items that we don’t want to forget (think library books, dishes to return etc.)

Before we were just keeping it there laying carelessly on the floor but now we have some very functional little cubbies and a freed up end table to use as our launch pad. This helps tremendously in getting us out the house in a more orderly fashion and also with continually forgetting items.

Picture  of Launch Pad now:

Decluttering, launch pad, organzing

I don’t have any before pictures of the kitchen  because by the time I got there I was in a pretty good groove and forgot I was going to blog about it. Here’s an after picture.

Decluttering, organizing

I’m not able to get completely clear counter space but its functional therefore its good enough.

With our space more organized my mind is more free, my heart is more open to others, I feel more creative and frankly more motivated to enjoy life. I’m satisfied with it for now but I guarantee within six months to a year the itch will come back and I’ll take advantage of that motivated time to free us up even more.

(*Another reason I make it a point to periodically de-clutter is I have found the less “stuff” we have, the easier it is for the items we do use  to find their way back to their place, which makes maintaining an organized state much easier. Plus it allows this little one more room to explore :-) )
g tube, special needs, organizing


(*These are affiliate links:  Read Disclosure here.  I only link to and recommend resources I use and love!)

My hands down absolutely favorite book on organizing is:  Making Your Home a Haven: Strategies for the Domestically Challenged. This was the book that got me on the organized track.

A couple other good books are:

The Get Yourself Organized Project  (I’m reading this one right now)  This is currently $1.11 for the Kindle Version, as of this posting.  Be sure to check price before purchasing as they change often.

The Money Saving Mom’s Budget: Slash Your Spending, Pay Down Your Debt, Streamline Your Life, and Save Thousands a Year.  This book deals mostly with budgeting but emphasizes the importance of being organized to save money.  (Special Needs = Need to save money. The price on anything labeled special needs= ridiculous) Crystal Paine, the author of this book has an outstanding blog with some really good tips on living intentionally, decluttering, money saving, etc.  A great one to check out.

Let’s Talk:  Are you naturally organized or is it something you have to work at?  Any organizing tips to share?

Refusing Discouragement and Choosing Life With A Cherry On Top

For a good portion of Champion’s life, I’ve allowed discouragement to reign when it comes to getting out and enjoying life with him.

It’s a lot of work to get places with him (Meghan gave a very good picture of what its like here) and  sleep deprivation has always been my go to excuse.

The past few weeks though sleep has been getting better around here, which means I have more energy to actually do fun things, things outside of going to  therapies and doctor appointments.

For a long time now I’ve told myself that once I started getting more sleep we’d go enjoy life a bit more.  Well now that sleep has somewhat returned to our house,  I still find myself  making excuses.

Refusing Discouragement Special Needs

For too long I’ve been stuck in this place with a discouraged mindset.

Discouraged by Champion’s diagnosis, discouraged by how hard it is to go places with him, discouraged by not having very many friends to enjoy life with (somewhat self-inflicted isolation has been happening here).  I’ve been living discouraged  by whatever excuse I can come up with at that moment, as I continually decide to let life pass right on by.

Then last week Paula left this comment on my post about special needs parenting being hard.  And I couldn’t get these five words of hers out of my head, “I refuse to feel guilty.”

Those words stuck with me.  The more that I mulled them over, the more I began to hear them as  “I refuse to be discouraged” , the thing that has been holding me back, the thing I need to refuse.

I need to refuse to continue  to allow my view of  Champion’s diagnosis and the very real limitations that are a part of our lives to dominate and deflate our family’s ability to have fun.  I need to refuse to allow discouragement to steal Champion’s childhood from him, and from me.  I need to  refuse to allow discouragement about the energy and effort having a little fun will drain and take from me to be the deciding factor in  my decisions to not participate fully in life.

I need to refuse discouragement.

So this is my new resolve:   I refuse to be discouraged.

We will have fun, enjoy life, and get out and about in spite of.  We will make good memories together as a family.  We will not let life pass us by.

Sure it might take a good amount of effort to get going. Sure, its hard to come out of isolation and build new friendships. Sure it’s easier for me to keep coming up with excuses as to why we can’t  than it is to just go and do.

But I’m ready.  I’m ready to refuse discouragement, to cast it down every single day till refusing it becomes a part of me, just like deciding to accept discouragement made it a part of me over the last few years.

I’m ready to get out and really enjoy life with this beautiful son that I’ve been incredibly blessed to mother.

This past Sunday evening we had our first successful, unplanned, spontaneous outing as a family.  Champion was on a break from his feeding so we jumped in the car and got a yummy decadent treat of frozen yogurt.  It was really fun and invigorating I must say.

Even though it was just a trip to get some yogurt, it felt like more than that.  It felt like it was the beginning of us throwing off the weight of discouragement that we have been allowing to rule us for so long and instead we were saying yes to enjoying life.
Choosing Life Special Needs

(I really liked this sign and wanted to fit the cherry on top concept in some way so I tried, but this last line is all I could do :-) )

So here’s to refusing discouragement and instead choosing life with all the sweetness of a cherry on top!

Let’s Talk:  What thoughts, attitudes etc do you find yourself needing to refuse?  How have you dealt with discouragement? 

Linking up with: Pour Your Heart Out

Why I’ve Been So Weary In My Soul

I’ve been physically tired for quite a while now. Emotionally I’ve been pretty drained too. But, it hasn’t been till the last few months that my soul and spirit has been so drained and exhausted and weary.

And I know exactly why.

Its been ages since I prayed. Its been ages since I poured my heart out honestly to God. It’s been ages since my Bible has been opened.

Its been ages since we have set foot inside a church service. Its been ages since my mind and heart have been refreshed and rejuvenated and strengthened from spending quiet one on one time with God.

It’s been ages since I’ve spoken the promises of Jesus over my family. Its been ages since I’ve really relied on those promises.

Jesus, Special Needs Parenting

I don’t think I realized how sustaining a thriving relationship with God is, until I let mine lapse.

I can pinpoint that for me becoming more and more drained and weary in my soul and spirit coincide with becoming less and less preoccupied with praying, reading my bible, and God in general.

For me the correlation is glaringly obvious and I need to do something about it.  Because this special needs parenting thing is very hard and I need help.  I cannot do it alone.

So very slowly, I am returning to God, to bringing my wounded, exhausted soul to him for healing and rejuvenation and restoration and rest.

I am making His Word a priority in my life again. I am choosing to believe His promises for Champion and my family. I am choosing to saturate my day with positive, mind renewing thoughts of how great God’s love is.

I am choosing to believe again in a good God, a God I can trust, a God who did not inflict my son with a disability to teach me a lesson, but a God who loves my son, who wants to do miracles in him, and who loves him more than I ever could.

Miller Dieker, Special Needs

I am choosing to rely on a God who I know will equip me with everything I need for this journey I am on as a special needs parent. I am choosing to allow Him to relieve my exhausted and weary soul from trying to do this without Him.

And I am clinging to this promise from Jesus: 

“Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls.” -Matthew 11:28-29 NASB

Let’s Talk: Special needs parent or not, how is your soul feeling? Do you find yourself refreshed and rejuvenated or exhausted and weary? What do you find helps you to be rejuvenated and what do you notice is going on when you’re more on the drained, exhausted, weary side?

A Bit About Our Journey to A G-Tube Blenderized Diet

**This post is not meant to be medical advice in any way.  Every person is different and a Doctor must be consulted prior to changing a GTube Diet.**  

Champion’s feeding has definitely been one of the more saltier challenges of our journey thus far. 

At one point when he first got his tube at 5 months old, he was on a very broken down elemental formula called Elecare.  He was on that formula for about a year but he could not tolerate it and he barely grew while on it.

We would feed him and feed him for literally hours and hours through his tube each day, only to have most of it come back up.  During that time period we ended up having to get rid of a rug and rocking chair because they just got to soiled from him not keeping his feeds down.   Doctors  kept telling us, “Oh,  it happens with g tube fed kids, there’s nothing we can really do, he’s already on a broken down, allergen free formula, don’t worry its normal.”

We just didn’t feel that it was ok or normal for Champion to spend his days with his formula coming back after almost every single feed.  He was so uncomfortable, so small, and cleaning it up all the time was dreadful.  We knew there  had to be a solution.

So I did what has helped me through so many challenges as a special needs parent, and that is to search the internet to see what other moms and dads are doing and learn from them.  

While searching for a solution, I came across forums and groups and websites dedicated to parents feeding their children,through their g tube, real food that had been all blended up.  The idea was so foreign to me, no doctors had ever suggested it as a solution, but after reading about other parents success with it I was hooked on the idea.

I eagerly ordered the Homemade Blenderized Formula Handbook from MealTime Notions.  When it arrived I read the whole thing in about two days, crying while I read it.  I fell in love with the idea that I could actually make Champion’s food for him and move him off the formulas that just weren’t working for him.

 Homemade Blended Formula, Special Needs, G Tube, Blended Diet

That idea that I could make food for my son and choose what went into his tiny stomach, despite him being tube fed…it resonated deeply in the maternal instinct part of my soul.  I hadn’t realized how sad I was that I hadn’t been able to  cook for Champion or even choose what he was eating,  until I learned there was the chance that I could still do those things.

So very slowly, we  began adding small amounts of baby food to his formula. When we saw that he was tolerating it well we began the process of replacing all of his calories from his formula with real, honest to goodness food.  It felt so good to do.

Blended Diet G Tube Feeding

His throwing up was drastically reduced by him being on a blended diet.  We were shocked when he began growing and seemed to be so much more comfortable.  We knew the blended diet was the right choice for him.

He’s been on the blended diet for over two years now.  However, even on the blended diet we still have some trouble with Champion growing at a slower rate (but at least now he’s growing) and occasionally we still have trouble with him throwing up (he’s got a pretty bad case of acid reflux).  But nothing like it was on the formula.   And we now have an amazing Doctor and Dietician who support his blended diet and are  helping us make sure he’s getting all the right nutrition and calories that he needs.

Despite our success with the blended diet,  Champion’s feeding tube has still cost us a lot of sleep. 

We have recently changed up Champion’s blend to have less volume hoping we’ll be able to go to bed earlier.  We think we’re going in the right direction with it and hopefully soon we’ll be settled on a diet that is a happy medium of him growing, feeling full, and me being able to go to bed at a decent time.  (I explain here why his feeding affects what time I go to sleep).

Homemade Blended Formula, Special Needs, G Tube, Blended Diet

His current amount that we have high hopes for. He gets one bottle of water then one bottle of food, repeated four times throughout the day. (Its quite a bit of water but about a year and a half ago he was hospitalized for SIX days for constipation, so we hydrate, hydrate, hydrate!)

This is just a little bit about Champion’s G Tube journey.  I plan on sharing in the future more specifics about his diet and a bit more about the ins and outs of how we do his blended diet (and how he came to even have a g tube in the first place.)

For now though we’re hoping, really really hoping, that we can find a good diet that works for him in the growth department and works for me in the sleep department.  Hopefully I’ll have a positive update on this soon :-)

Special Needs, Having Fun

Still on the small side but definitely full of energy!

Let’s Talk:  Any tube feeding moms reading this?  If so what has been the most challenging thing about tube feeding for you?  Anyone had success with weaning their child from the g tube?  And tube related or non tube related, special needs related or not, any encouraging sleep stories???

Linked Up At:  Special Needs Blogger Weekend Link Up

Seven Years and Going Strong

Last week, my husband and I celebrated seven years of marriage.

When I say celebrated I don’t mean we halfheartedly acknowledged the passing of our anniversary like celebrating it meant the past few years. No, this year we actually celebrated it, as in got out of the house together and went on a date celebrated it.

And we had a really good time!

A  year ago we moved but hadn’t gotten around to really exploring the fun stuff in our town.  Trip to the local Children’s Hospital and driving by Champion’s new place of therapy, that was done prior to us even signing our lease.  Fun places, not so much, they were mere mentions on our “Oh we should go there one day” list.

Well finally one day came!

With Champion happy and safe in the care of Grandma and Grandpa, we headed off to the local mall that we heard had a lot to offer. We were not disappointed.

We had a delicious, healthy lunch at a veggie grill place. It was surprisingly filling. I enjoyed my selection a little more than my husband. We’re trying to switch how we eat and are sort of still learning by trial and error what we like that’s healthy.

This time I scored and Hubby had an error.  He didn’t like his so much but mine was pretty good.

Special needs, marriage, anniversary

 My delicious and surprisingly very flavorful Portobello mushroom sandwich. Oh yeah, I did have a bit of an error, the Quinoa Pasta Mac n’ Cheese didn’t really hit the spot.

Candy store, special needs, marriage, date night

 Our Next Stop.  Healthy Eating: We’re trying, we really are.

After getting somewhat filled up, and making a pit stop for Hubby into the candy store right next to the veggie grill place, we set out walking through the mall.

Exciting huh? It actually was.

It’s a beautiful outdoor mall with various offshoots complete with decorative fountains and cushioned chairs placed strategically outside the stores.  Perfect for one to relax while the other one shops.  Except we both just relaxed.


Isn’t this fountain beautiful…sigh…and yes that is my finger in the corner.  

Fountains, special needs parenting, date night

 We didn’t even go into any stores, except Target. Oh yeah and one clothing store chain I had been wanting to go in for the past several years, there was a really cute dress I had seen in the window a couple of years ago.

I don’t know what made me think the dress would still be there, but I walked out quickly when I realized that apparently the eighties styles are back in?  Somehow in my preoccupation with therapies, doctors appointments, and most of my interaction being with people dressed in scrubs, I completely missed that one.  Yikes.

Anyway, we spent the afternoon walking around, sitting occasionally, getting Hubby’s finger sized to replace his lost wedding ring and just enjoying being out and about.  It had been awhile since we’d had a whole afternoon out together.

Ferris Wheel, Date Night, Special Needs Parenting

 We rode the Ferris wheel and finished off the night having a delicious dinner at Cheesecake Factory complete with rich filling cheesecakes and conversation, going back and forth between light and easy topics and deeper more meaningful things that needed to be said.

Happy Anniversary, Special Needs Parenting

It was a very happy anniversary. Our seven years of marriage has been a bit bumpy. Not bumps necessarily in our relationship, but some of the things we have faced.

We’ve held each others hands as we handed our four-month old son over for open heart surgery. We sat side by side as we were told we shouldn’t expect our son to ever walk, talk, or live very long.

Together we fought off doctors dismal and hopeless predictions for our son’s life. Together we went to God for hope and miracles for our son. Together we’ve seen quite a few miracles and expect to see even more.

We shared together the excitement of two more pregnancies and dreams of our family growing.  We wept together when we lost both of those babies to miscarriage.

We’ve had lots of happy moments too.

But it’s been the more difficult moments that have defined our marriage and shaped it to be what it is today; strong, healthy, and happy.

That’s what conclusion we came to this year. We’re still happy we married each other and despite some of the challenges we have faced, life together is good.

And I know it’s cliché but we’ve also learned that when life hands you lemons, the best thing to do with them is make some lemonade.  And that is what we have been doing.

When Life Hands You Lemons, Make some Lemonade

Here’s to many more years together!

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

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. If I didn’t change him he would be soiled all day. 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.

Saying parenting a child with Special Needs is challenging doesn't mean you're downing your child, or that they're not a blessing or a gift.  Parenting a child with Special Needs is challenging, and its ok to say it is. www.thesweetandthesalty.com

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

Related Posts Plugin for WordPress, Blogger...
Simple Meal Planning - Plan to Eat