My Honest Feeding Story

Once a beautiful new baby is placed in your arms, life as a mom has arrived! Whether this new little bundle of joy is your 1st child or your 5th; the journey of loving a new little human, taking hundreds of baby photos, non-stop feedings, countless diapers, and sleepless nights has arrived!

Along with all of the love and excitement comes a new season of fears and doubts.

Am I doing this right?
Do I breastfeed or bottle feed?
Why is he crying?
I'm so tired, can I do this?

As a mom of 4 children who all survived the newborn months, let me just assure you...

You can do this!
You'll get sleep again one day!
You're not a failure!

The topic of how and what to feed your precious baby can be such a controversial one. Mothers can be found deep in debates about whether breast or formula is best and many aren't afraid to boldly share their opinion and choice.



When The Honest Company asked me to share my feeding story, I didn't quite know what I would say. With my first 3 children, I nursed for the first several months and then supplemented the final couple of months before they turned a year old with formula. Feeding each of my babies felt very typical and normal, and they grew as the doctor's growth charts said they should.

When our 4th kiddo burst into this world, nothing was typical or normal. Zachary's birth was the  start of a completely new journey. Our sweet Zachary is now a busy special needs 5 year old with quite a long list of doctors appointments to stay on track with his medically complex syndrome, Lowe Syndrome.

During the early newborn months, we had no idea about the complexity of Zachary's needs but we did know things weren't quite right. Zachary had 2 separate eye surgeries during his 2nd month of life. He was extremely small and struggled to grow.

I distinctly remember trying to nurse Zachary in the dark and quite hospital room following one of his eye surgeries. I was tired, lonely, and frustrated that Zachary seemed to not be able to eat as much as I would like and that he seemed to just not be growing. His body was so frail and small. The decision was made a week or so later that for whatever reason my breast milk was not enough and we started him on formula. I'd never had one of my babies started on formula so early on and I felt like a failure. Looking back, I wish I could tell my younger self that it was not at all my fault. Symptoms of Zachary's syndrome is just that - weight gain is and will always be a constant struggle.

When Zachary was 4 years old I felt those failure feelings surface all over again as I sat in the surgery waiting room while my son had a G-tube placed. From breast milk not being enough, to formula loaded with added calories not enough, to table food also not being enough to make my child grow, new extreme measures had to be taken. I felt like I hadn't tried hard enough.

Now 5 years old, Zachary's lifeline to nutrition and weight gain is formula fed through a G-tube going straight into his stomach. Sometimes breast isn't best, formula isn't best, and sometimes crazy surgical forms of feeding are best. And it's okay!

Remember those fears we feel with our newborns and the assurances I shared? Guess what! They still hold true!

Whether you breast feed your little one, mix and shake bottles of formula multiple times a day, or find yourself using tubes, syringes, and a pump to feed your little one. It's ALL okay!

You're not messing your little one up!
You're not a failure!
You can do this!

It's not about our preferences or personal opinions all the time.
Obviously more important is the health and safety of our precious little ones, who we wouldn't trade for anything in the world.

Be sure to visit The Honest Company for safe, eco-friendly, and affordable feeding options for your baby.

Follow our family's journey with Zachary on YouTube HERE.


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A Special Needs Daddy's Perspective / Patience & Time

As I began to formulate what I wanted to write about in this post, I asked myself “What virtues do special needs parents require in order to do what they do?”

It wasn’t difficult for me to come up with a long list. And as I ask this question, I’m sure that it would not take long for anyone who reads this to do the same thing - even with a little exasperation and a little mental thought of “You have no idea!”

There are 2 virtues that hung out in the front of my mind as I thought through the 5 years that we’ve had with Zachary so far. Patience and Time. 

Whether it was waiting nearly 3 years for a diagnosis, or our daily watching Zachary walk with his walker and wanting to yell “Dude, just let go and walk!” we have needed so much patience and time over the years.

The hard part for me about writing this is knowing that the amount of patience and time required of me is really nothing compared to what is required of my beautiful and awesome wife. And I know that our story pales in comparison to the many out there who are in far more difficult situations than us. (Serious high-fives to all of you!)

If you were to hang out in our house for a few hours here are some of the things you might hear. 

“Zach stop slamming doors!” 

“Zachary stop staring at the sun!” 

“It’s too quiet in here…Zachary where are you?!”

“Zach did you just poop again?”

“He’s throwing up again!”

I really can’t get mad at him - he’s just too cute!

Most weeks Zachary has at least one doctor appointment, if not multiple, in addition to his several therapy appointments a week. With these appointments come tests and test results. I think to a certain degree everyone knows how difficult it can be waiting for test results, especially when they can be life changing. So much patience is required while you sit by the phone waiting for the call with results. 

What we’ve learned is if they say 2 days, we try to lower our expectation automatically to a couple of weeks - keeping our anticipation down and irritation level at a minimum!

Lowering our expectations help with patience in many areas - such as trying to communicate with our mostly non-verbal child, waiting for him to learn to walk, the battles trying to get him to eat, the nightly time-consuming bed-time procedures, repetitiveness in playtime, and on and on. 

This doesn’t mean that we lower our expectation of him and how we push him to be better. It will always be our goal to improve communication and see him walk, it just takes a LOT of time!

On that note, that brings me to the other area I want to talk about, which is time. The amount of time that is required to take care of a special needs child is astronomical. For my wife and I it doesn’t seem to matter how much time we put in, it feels like we’ve not done enough. 

The natural reaction is to keep putting in more time with the hope we will improve his life. But somehow the only thing that happens is we seem to get more frazzled and our patience wears thin. There comes a point that the amount of time we put into our child begins to take away from other areas of our life that deserve our time. 

Here are some things that are hugely important when it comes to our time - areas that we’ve come to learn and can’t ignore.

1. Eating Properly: One of the first things that goes when time is lacking is eating properly. Not just eating, but getting the proper nutrition that our body requires. This not only helps us feel better, but adds energy to our life to accomplish the things that need to get done.

2. Sleep: This may simply mean breaking routine and getting extra sleep on nights we know we can, so we can be better prepared for those nights when we won’t get much sleep.

3. Quality time with the other kids: Kids have the incredible ability to adapt to any situation they are in, which makes it all the more important to set aside time where each of our kids can have our total focus.

4. Get-away time: Two things that have worked wonders for us are once a week date nights where we can focus on each other and relax, and once a year getaways to get a few extra nights of sleep and recharge.

We have found that when we intentionally try to maintain these areas of time not only does it improve our quality of life but it improves our patience with each other, with the kids, and with Zachary.

I do want to make it clear that we in no way think that we have it all together or that we can coast through life. We very much recognize that our journey with Zachary will always be an up-hill battle.

As I watch the Olympians, I see athletes dedicating their lives to their sport all for the chance at a medal, proving to the world that they are the best. For us, I see no medals or interviews about being the best in the world. Just a cute little boy who needs a lot of attention. 

As I take a step back, I smile. I hear on the TV about all the time and energy the athletes spend for those little medals. But those medals are really just going to sit around and collect dust and they will definitely never smile back! 

Our ultimate goals is to not be great in the world’s eyes but in the eyes of our Lord and Savior Jesus Christ who give us this promise...

“Whoever does it unto the least of these does it unto Me.” Matthew 25:40

-Peter

The Special Needs Journey - A Daddy's Perspective

I have a very special treat for you today. My husband Peter is breaking his online silence as it were and is sharing his special needs father's heart with you! As I read Peter's words and typed this post for him, I sat in our overstuffed recliner and wept. I'm SO excited for you to hear from Peter, my sweet Zachary's daddy.

If you were to have told me a number of years back that I was to one day be the father of a special needs child, I would have probably told you that I’m pretty sure that’s not a good idea. I most likely would have said that I’m not sure that’s something I could handle.

I remember many times growing up and coming across a handicapped or special needs person and feeling a bit awkward, not knowing how to interact or what to say. I’d instead find myself locating the nearest exit and high-tailing it out of there!

Now, however, things are very different. We were blessed with Zachary, a 5 year old boy born to us in 2011 with Lowe Syndrome. In short, Lowe Syndrome is a rare disease that affects only boys. Zachary has the mental capacity of a 1 or 2 year old with very little verbal skills and the physical frailty of an unhealthy 85 year old man. The chance of having a boy with Lowe Syndrome is about the same as winning the Powerball jackpot. But given the choice between having a half-billion dollars or Zachary, I would choose Zachary in a heartbeat even amidst the unknown difficulties - and even cleaning up his puke in the middle of writing this! Blah!

My reason for writing is to simply share with you some things that I have learned about being a father of a special needs child and why he is such a joy to Jessica and I and our family. These thoughts will in no way lead you to being the perfect special needs parent or provide you with more sleep at night, but maybe it will give you encouragement and make the times when you do sleep a little more peaceful!

I just told you I would choose Zachary over a half-billion dollars and you may have thought “of course you would! He’s your flesh and blood.” This is true, but this truth goes much deeper than the fact that he is my son. The truth is that God is all powerful and all knowing, that God is everywhere holding all things together including the heart beating in your chest, and that he is personal and nothing escapes his notice. So you and I must realize that God doesn’t make mistakes.

Let me say it again for my sake - God doesn’t make mistakes! Whether it’s something you see in the mirror or it’s your son or daughter suffering from something ugly that is out of your control and it breaks your heart, God doesn’t make mistakes. He doesn’t see Zachary as an “oops” or an “I didn’t see that one coming!” God sees Zachary as fearfully and wonderfully made. (Psalm 139:14)

I am reminded of the story from the book of John where we see two very contrasting views of a man born blind. (John 9) The disciples view was that it must be either because of his sins or his parents’ sins. Jesus’ view, however, was much different when he said “This happened so that the power of God could be seen in him.” This passage reveals to me that God doesn’t look at Zachary filled with regret at what He had made, but He sees Zachary as a portal through which His power can be seen! Not in this life will I really understand how this will all work or what God’s plan truly is. 

This also brings new light to Psalm 139 that God “knit together” not just the seemingly perfect human specimens of the world but also those who were born with sickness, disease, and disorders.

When I choose Zachary over all the treasure in the world, it’s not just because he is my son, but because it’s exactly how God wants him to be and God’s precious thoughts about him cannot be numbered. (Psalm 139:17)

It is my prayer for your family and ours that in the middle of difficult and hard to understand times, God would make known to you some of those precious thoughts that He has for you and your children. Knowing that in sickness, disease, and disorders, God’s power, whether we understand it or not, will be seen.

-Peter

Friends, this is just the beginning! Peter will be sharing his heart and what he's been learning as a special needs dad all throughout the month of August. I hope you'll come back!

Follow our family's stories in our daily vlogs on YouTube HERE!

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I Said Yes...

I am busy.  I get easily distracted.  I don't always take time to be with my kids.  Some days I could waste hours on the computer if I let myself.  

There.  I said it.  I'm human, and I've been realizing once again how quickly time flies.  This week I have been contemplating how I spend my time, and realizing how often I postpone things my kiddos ask.  I get tired, busy, and frequently answer "not now" or "maybe" and never really intend to follow through.  While this thought has been following me around this week, I read a post from Kristen at Little House Joy today.  Go ahead.  Read her thoughts, and then come back.  Has she been reading my mind?  Serious.  I couldn't believe what I was reading. That's exactly what I've been thinking about.  

I've frequently wondered lately "what will my kids remember me as when they look back on their years at home?"  Will they remember a mom who was too busy cleaning or on the computer and didn't have time to listen or play with them?  Oh how I hope not.  I do think though that I need to be more aware of this & focus on them.  While I still have them under my wing I want to make the most of every opportunity.

So today I said yes!  I was baking the most delicious muffins ever (more on that later this week!) and Daniel asked to help.  Oh how easy it is to say "not this time" and quick get them in the oven.  But I said yes and allowed him to help.  After the muffins were in the oven, he asked me to play a board game with him.  He asks this a LOT, and I usually say "later."  But later rarely comes.  So right then and there I said yes.  Before I knew it the older two were joining in.  And although the kitchen and dishes didn't get cleaned before the muffins came out of the oven, I don't regret saying yes at all.  

It's not always easy to say yes and I think it takes a daily effort to put my selfish wants and desires aside & put them first.  Lots to ponder. (of course this doesn't mean I'm going to give them everything they want and spoil them!)

And now just a little teaser.  I am so over the moon for these muffins that I need to gather my words & pictures to tell you about the little beauties.  They were wonderful.  Do you see that delicious glaze on top?   Yummo!

My eyes are ever on the Lord,
Jessica

My One and Only Goal This Week

I have a library book sitting on my end table called The Five Love Languages of Children.  I haven't read it yet, and the due date is approaching.  But tonight I realized I don't necessarily need to read it right now.  My daughter's love language of Quality Time popped it's head a few times this weekend. Talk about making a mom feel bad.  This is what she said at bedtime tonight.  "Mommy, sometime can you and I play with my toys together just the two of us?  When you're not busy with the little boys?"  Talk about twisting a knife in my chest.  Ouch!  Okay, I hear her.  Loud and clear.  I admit it.  Mommy gets busy.  Mommy is easily distracted. Mommy has to teach a lot of piano lessons to attempt to help pay all of the bills.  But this mommy, amidst all of my other responsibilities of the week, is setting one goal.

*Spend time with daughter.  Play together.

She doesn't need me to even spend money on her.  She just wants time and attention.  Of course I will.  And I'm sorry I don't do it as much as I should.

Goals for this week

Every week is different.  One week I am in my groove and the house stays super clean, I keep caught up on laundry, and my children behave.  I love those weeks.  Clean house and clean laundry make me happy!  But the reality is, those beautiful weeks can be followed up with a week where I don't have time or make time to clean the toilets or the shower, or even have the motivation to fold the laundry.  These weeks I find myself more irritable, less patient, distracted with internet and computer.  I'm learning I need to prioritize my time better and not get distracted by so many things.  I also get lazy some days.  It all comes down to how I spend my time.  Do I allow myself to sit and peek at facebook or twitter?  Or do I read a book to my 4 year old?  Do I how on my favorite blog?  Or do I fold and put away one basket of laundry?

Here's my time managing goals for this week to get what needs to be done, done - and also, in turn, allow time with my sweet kiddos who need time with Mommy this summer.  It's a day at a time for me.  One list a day.  I can do this!

• Wake up early.  I need my time in the morning.  I need my coffee, Bible, and a notebook and my time with God before everyone rises.
• Plan my day.  I will sit and plan my days this week.  When I plan ahead to do the laundry and clean the bathrooms I find I'm more likely to stay on track
• Take a nap.  With early rising, I've found I MUST rest for 30 minutes.  If not, mommy is GRUMPY by dinner time! :)  
• Stay offline.  I was lazy and lax last week with my 9 - 9 challenge.  I will, a day at a time, work on staying offline between the hours of 9:00am - 9:00pm.  This is hard for me but a true game changer when it comes to being available for my kids and home.
• Play.  My kids need me this summer.  The days and years go fast.  I'm going to try to stick on schedule and keep up with the housework but also create space for just being together.  Playing. For us this week it's going to be early afternoons of playing together, and I've set aside Thursdays as a day of fun as well.  For me this needs to typically be out of the house time.  I get distracted and start mopping when we should be playing or running around!  So bowling, trips to the park, these are Thursday fun.

Worn Down

Do you ever have one of those days when you feel like you can't even drum up energy to pick up the toys off the floor?  I have been doing so great with my new housekeeping schedule & my early morning routine.  I have done so well staying offline from 9 - 9 and focusing on my family and chores.  Today is the day where I can't focus on anything.  I'm exhausted.  I'm distracted.  I think I could sit on the couch and not move for hours.  Today is the last day of school for the kiddos.  They had a 1/2 day and I had big plans of doing something fun, but they're now enjoying a movie.  I just can't.  I feel bad and feel like a failure, but my husband reminds me "it's okay.  You don't have to have everything perfect."

So here's what I'm going to do.  The baby is sleeping and the older kids are quietly entertained.  I'm going to pray, and then I'm going to close my eyes and hopefully wake up refreshed to finish my responsibilities for the day.  I'm also going to thank God for the grace to get up and start over tomorrow.

What do you do to keep on keeping on as a mom?  Do you have a secret for grabbing the focus and energy when you need it?