What a Friend Did That Meant The World to Me

My son was born by emergency c-section (his heart rate was in the 70s) pretty much as I walked into the hospital in labor. 

After his chaotic delivery, the Dr let me know that his birth was one she would always remember, that the line of him being born alive or not making it through the birth was so thin that had we waited any longer to come in we would have lost him.

 I’m so glad we came in when we did, despite having a huge argument right before about of all things, some relaxation music I wanted to bring with to keep things calm as I labored.

Calm and my son’s birth are definitly not synonomous. 

When he was handed to me in the recovery room, he began choking. He was drinking formula to help his blood sugar, which was dangerously low, and as he looked at me in excited recognition (those seconds were beautiful) he turned blue, choked, and was grabbed from my arms.

 Doors flung open and the nurse tending to me ran out with him. He was resucitated in the NICU and remained there. 

It was chaotic, scary, and I instictively knew we were about to embark on a journey that would bring a new depth into our lives like nothing else could.

The next day a kindhearted cariologist came into my hospital room and drew us a picture (I later learned cardiologists are notrouious for drawing pictures :-))  The picture depicted the four things wrong with the way my son’s heart had formed, signifying the congential heart defect known as Tetraloy of Fallot, a condition requiring open heart surgery.

We were devastated and afraid. This was only our second day as parents and we had only even held our son for mere seconds.

I honestly wouldn’t have been able to pick him out of a line up of babies, our initial meeting was that brief.

And yet here we were, preparing our minds and hearts that our precious baby boy would be needing open heart surgery in the coming months.

It was overwhelming. So overwhelming.

When we let family and friends know, they were genuine in showing their concern, asked us questions and wanted to learn all that they could from us about what our son was facing – and I truly appreciated the support.

However, as I was struggling as a first time new mom, with a medically fragile child, answering the same questions over and over began to really take a toll on me.  The more I talked about it, the more overwhelmed and fearful I became.

I grew weay, began to withdraw and was having a hard time articulating the effect continuing to to provide information was having on me.

Then one evening a good friend stopped by and we started talking about my son and his upcoming surgery.


As I was talking about it she didn’t ask questions.

She wasn’t curious about the condition or needing any information, she just listened.

And I found myself feeling refreshed and encouraged as I talked with her.

What was so different about my time spent with her?

When this particular friend learned that our son had a heart condition, she began researching and learning all about the condition herself.

By doing that, she unkowningly lifted the burden of information bearer off my shoulders.

She was able to help me process the magnitude of what our son was facing, dialogue with me about what I had learned (because she had read a lot of the same information), and most importantly, she was able to just listen to my worries and fears.

Did our other friends do anything wrong? Absolutely not! I want to be very clear on that.

I appreciated alll our friends and family showing their support and taking a very genuine interest in learning about the challenges we were suddenly facing.

This particular friend though, went above and beyond in a way that I didn’t even know I needed.

As soon as I learned what she had done, it meant the world to me.

Looking for a way to help a family member or friend who just found out their child has special needs?

For the parents of a child with special needs, especially when just learning about it themselves, the news of a child’s diagnosis is overwhelming. For some parents, like myself,  to keep providing the same information over and over only adds to the overwhelmingness of it all.

A great way to be a support to a family member or friend in that position is to learn all you can about the diagnosis yourself. By learning about it yourself you will be able to provide a different level of support for your loved one.

If your family member or friend chooses to give you the information about it themselves, great!  But if not, if its too much for them, you’ll be educated yourself and be able to provide the listening ear and  support that they really need.

If you are the parent of a child with special needs and are feeling overwhelmed about keeping family and friends updated on how your son or daughter is doing, a caring bridge page, blog, or a private facebook page or group is a great way to keep your support system informed, ONLY if it doesn’t add more to your already full plate.

And if you are a family member or friend following along on a family’s medical journey, I encourage you to make every effort to learn what you can about any new procedures, tests, diagnosis, therapies or treatments  the family is facing.

I guarantee you, it will mean the world to them!

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My very slow and simple way I am hoping to break the habit of eating out way too much

We have eaten out far too much for far too long.

If I am completely open and honest about our eating out habits (which I am going to be) it has been a couple of years, probably at least 3 years plus, where we have bought food out every single night and a lot of times breakfast and lunch in addition to dinner.

We hardly ever actually go out to eat in the sense of going to a restaurant and sitting down to eat, but every single night for the past couple of years my husband has been stopping on his way home from work and buying us dinner.  He usually buys lunch out as well and for a long time he was also bringing me lunches at home on his lunch break.

How we picked up this bad habit and why we need to change it

I have never been the most efficient at consistently cooking but once I had my son my efficiency in this area plummeted to almost non-existent. And in some ways eating out has been a life saver when we were in extreme crisis mode and all my time was spent justifiably elsewhere.

However for some time now we have been adjusted to our “new normal” of life and don’t spend quite so much time in crisis mode the way we used to. But some bad habits have carried over to this season where things are more stable and steady, and eating out every single day for pretty much every single meal is one of those habits.

And this habit needs to change for very obvious reasons.

We are literally eating our income. Literally. Eating out all the time has definitely affected our budget and bottom line and not in the healthiest way.

And speaking of health, eating out has definitely taken a toll on both my husband and I healthwise as well.

We have gained weight, we lack energy (and five plus years of sleep deprivation isn’t helping us in the energy department), and we generally just don’t feel as good as we could.

As a result we don’t always cope with the challenges we face as a family in the best ways.

So for the sake of both our health and our budget, now that we are in a season where eating out is no longer a life saving option that we’re grateful for, but instead a bad habit that we’re struggling to rid ourselves of, I am hoping to slowly and steadily kick this bad habit to the curb. (null)

Enter No Cook Freezer Meals

I have long loved the concept of having meals all ready to go in the freezer. However, I don’t have large chunks of time (or energy) to carve out to actually spend hours cooking meals from start to finish in advance and freezing them. (And cooking a meal from start to finish each day just isn’t an option time wise right now either).

So when I came across the idea of no cook freezer meals I was really intrigued. Basically the idea is that you prep all the ingredients for a meal and freeze them in a Ziploc bag all prepped and ready to go. Then all you have to do is thaw it out and throw it in the Crockpot or cook it the day you want to eat it.

I knew this was the way for me to break this bad eating out habit of ours. It requires some time and energy up front but not as much as doing a complete start to finish freezer cooking session. For the pay out I feel the amount of time and energy it requires is worth it.

My Plan

This past weekend I finally got around to it and set out to do my first no cook freezer session.

I chose two Crockpot meals I have made before and know that we like. I only chose two because I want to start small, be able to see some impact from it but not overwhelm myself to where I’m exhausted, get nothing else done and give up and go right back to buying out all the time.

I know from my previous failed attempts to quickly change bad habits that slow and steady is the way to go and the way to ensure that the bad habits stay away and remain replaced by the habit I desire to have instead.

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My goal moving forward is to just prep and freeze two meals on the weekend (or during the week if some time happens to come free) for the next four weeks.

After those four weeks I plan on bumping it up from two meals to three meals prepped and frozen at a time. After four weeks of doing three meals I’ll bump it up to four meals and so on till I get to five meals prepped, frozen and ready to be cooked throughout the week.

This will leave room for leftovers one night and then a night of buying out as a treat (or for very hectic days). As far as the recipes I’m using I plan on using ones I’m familiar with and only adding two new recipes a month, every other week.

Going into the week I’m pretty excited to have two meals completely ready to go and all I have to do is thaw them out and pop them in the Crockpot. And I feel good that it wasn’t too overwhelming prepping the two meals, I wasn’t so exhausted from it that I wasn’t able to do anything else, and the cleanup wasn’t that bad.

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I’m actually looking forward to doing two more meals next week. I have a feeling this “No cook freezer method” and increasing the amount of meals I do per week very slowly, and slowly adding new recipes to the mix is going to work very well for our family.

I will keep you updated on how it all goes!

Here’s the recipes I used this go around:

Print Recipe

Vegetarian Chili

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Adapted from: Crock-Pot® The Original Slow Cooker Recipe Collection

Serves: 4

Ingredients

  • 1 chopped onion
  • 1 chopped red bell pepper
  • 1 tbsp minced jalapeno pepper
  • 2 cloves garlic minced
  • 1 (28 oz) can crushed tomatoes
  • 1 (15 oz) can black beans rinsed and drained
  • 1 (15 oz) can chickpeas rinsed and drained
  • 1 (15 oz) can corn rinsed and drained
  • 1 tsp sugar
  • 1 tsp ground cumin
  • 1 tsp dried basil
  • 1 tsp chili powder
  • 1/4 tsp black pepper
  • sour cream optional
  • shredded cheese optional
  • croutons optional

Directions

    1. Combine all ingredients except sour cream, cheese, and croutons in crockpot.
    2. Mix thoroughly and cover.
    3. Cook on low for 4-5 hours.
    4. Enjoy with sour cream, cheese, and croutons (optional).

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Italian Chicken

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Adapted from: Crock-Pot® The Original Slow Cooker Recipe Collection

Serves: 4

Ingredients

  • 2.5 lb or so chicken breast tenders
  • 8 ounces canned mushrooms sliced
  • 1 medium green bell pepper chopped
  • 1 medium zucchini diced
  • 1 medium onion chopped
  • 1 (26 ounce) jar pasta sauce
  • box of whole grain or quinoa spaghetti

Directions

    1. Mix all ingredients, except spaghetti, in crockpot and cover.
    2. Cook on LOW for 6 to 8 hours. When chicken is tender it is done.
    3.  Serve over cooked spaghetti.

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Let’s Talk:  What are your strategies for getting meals on the table?

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My Heart Cried This Valentine’s Day

My heart cried tonight.

It cried really really hard. It cried big gulping soul wracking sobs.

Sobs that left my heart aching. Sobs that left my heart feeling like it had shattered into pieces. Sobs that reminded me that the fragile dull heart breaking pain that has lived inside of me since learning of Tyler’s diagnosis is still very much there.

A pain that seems to just lurk there dormant deep down till random moments come along that awaken it and bring it to the surface with such intensity that I feel like I am just receiving the news of Tyler’s diagnosis all over again instead of five years having gone by.

This soul wracking, heart breaking pain made its presence known tonight.

It showed up as I was prepping for Tyler’s Valentines celebration at school. As I sat there signing Tyler’s name on the cards for him to give to his classmates, I realized how sad I am that he’s not yet able to fill the cards out himself.

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Recently I had seen a picture of a friends son the same age as Tyler making Valentine’s Day cards for his classmates and at that moment that picture floated thru my mind. It made me think of how wide the gap between Tyler and his peers is becoming and that many of Tyler’s classmates will be signing their own names or even making their own cards this year.

It made me think of how helpless Tyler is.

And not helpless in a “I pity him shame on me for saying that” way, but helpless in a “I am his mom and his main caregiver and I know intimately how much assistance he needs for even the simplest of tasks necessary to life, not to mention extras like filling out Valentines Day cards.”

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It breaks my heart to really honestly acknowledge his helplessness and to allow myself to really face it.

I feel sometimes like I’m not supposed to say how sad I feel about him not being able to do so much, but it honestly breaks my heart.

I’m so sad he has such extreme disabilities and I so wish he didn’t. It’s so hard to watch him try to do things or want to do things that his body just doesn’t allow him to do.

I feel it’s frowned upon and not necessarily very politically correct to admit these feeling but this is honestly just how I feel.

Feeling this way and acknowledging it doesn’t mean I don’t love Tyler or that I’m not grateful to be his mom or that he doesn’t also bring me a lot of joy. And it certainly doesn’t mean he’s less valuable than any other person.

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It means it’s hard to watch your child experience these challenges every single day and not feel any sadness about it and not wish you could change it for them.

So tonight as the magnitude of the challenges he faces hit me, my heart just cried, trying so hard to rid itself of a heart break that really no amount of tears can ever wash away.

The Lord is near to the broken hearted and saves the crushed in spirit. Psalm 34:18

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My Daughter Started Crawling and How I Felt About It

I was standing in the kitchen prepping Tyler’s g tube feed when I heard the rhythmic sound of determined little hands slapping the floor, steadily making progress towards their desired destination.

I held my breath as the slapping stopped and a decision needed to be made. At a crossroads she sat, either go straight to discover the fun at the end of the hallway or veer to the right and find mommy.

My daughter just started crawling.

This was her third day at it and the first time she had ventured beyond the comfort and safety of the family room. I was thrilled to look down and see that while sitting at that crossroads she chose the path that led to me. I kneeled down to snap her picture and sat on the floor clapping with her and letting her know how glad I was to see her.

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It was a bittersweet moment. These past few days since this new found skill of hers has taken off have been filled with bittersweet moments.

This was the first time one of my children have been able to come to me on their own.

Tyler is quite the snuggler and loves to be held and kissed but even when I know he wants to be close to me I am the one who goes to him. The fact that my daughter intentionally sought me out and made her way to me was a moment I treasured.

But it in the midst of enjoying that moment with her, there was the stark realization of what I have missed in these moments that I have longed to have with Tyler.

When Cassady started crawling I was not prepared for how emotional it would be seeing her be able to move from one point to another all on her own. It was a mixture of joy and sadness, joy for Cassady and her newfound freedom to enjoy and explore the world around her and renewed sadness that Tyler is still waiting for that freedom.

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I spoke with several other moms whose family makeup mirrors my own and found I am not alone in having such a wide range of emotions as milestones are met by one child while prayers are still waiting to be answered for the other child.

As times goes on and we adjust to our “new normal” of having a child who is mobile, I am sure these bittersweet feelings will not continue to hit me so hard.

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In the meantime I am seeking to make the most of these firsts with my daughter and savor them as I continue to treasure and enjoy the beautiful moments that I have had and will have with my son as well.

I am finding these moments with both of them will look very different, but I want to make sure I treasure them all just the same.

Let’s Talk:  Anyone else feel or have felt the same way when their first has challenges that the second one doesn’t?  Whether you have a child with special needs or not do you remember how you felt when your child first found you on their own?  What are some of your favorite memories with your little ones?

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Making it Work

I’ve been away from blogging for quite some time now and I honestly really miss it.

We went through a very busy season where I needed to find extra time. So I stopped blogging. Looking back I’m not sure blogging should’ve been one of the things I cut out.

I think some tougher seasons we’ve gone through since I’ve regularly posted here would have been made easier by having this very therapeutic way of processing and coping with challenges.

But, alas, what’s done is done. Enough about my regrets.

Making blogging work

Moving forward I am really excited about getting back into blogging! I am excited about connecting with other moms whose experiences mirror my own.

I am excited about having a safe place to get stuff off my chest. A place where I can be transparent without fear and without being misunderstood. A place to be very honest about the challenges as well as the beautiful moments of life as a mom to a child with special needs.

There is something so comforting, so beautiful and cathartic about reaching and being reached by other moms who completely get it.

So I’m making blogging a huge priority and I’m pumped up about getting back to it! But I’m making some changes to how I approach blogging so it can remain the priority I want it t be and not be something I become burnt out on.

There were some things I previously thought I “had” to do as a blogger. Several of those things took the fun out of it for me and made it more time consuming than it needed to be.

Here’s some changes I’m making and how I’m approaching it this go around:


1) Link Ups: I am only doing link ups I am genuinely interested in. I am not going to do ones that are for the sole purpose of promoting my own blog or just because someone asked me to.

If you do link ups the right way you are supposed to read and comment on a few other blogs that have also linked up. When I did link ups I wasn’t genuinely interested in and were for the sole purpose of getting my own blog out there, I found it draining and time consuming. I would spend way too much time trying to come up with a thoughtful comment when I didn’t really have anything to offer to that particular niche.

I have found some great blogs from link ups, but only found myself continuing to follow them from the link ups that were regarding topics that really spoke to me. So as I get back into blogging my policy on link ups will be to only do ones where the topic genuinely interests me and I genuinely have something to offer.

2) Blog Reading: This time around I am not going to read someone else’s blog just because they read mine, or leave a comment asking me to read theirs, unless their blog genuinely speaks to me.

There are so many awesome voices in the blogging realm, but just because someone has a great blog if it doesn’t speak to me and add to my life in someway than its not a good use of my time to read it. Just like there are people’s blogs I read regularly but they don’t read mine because my blog doesn’t necessarily speak to their life situation, there will be people who read my blog who have a blog of their own and their blog doesn’t necessarily speak to the season I’m in. And that’s totally ok, it’s great that there are so many voices out there to reach so many different unique interests and life situations!

I want to be intentional with my time and one way of doing that is to make sure time spent reading blogs is edifying and inspiring to me in the season and life situation I’m in and not something I feel I “have” to or “should” do.

3) Pictures: Finding the perfect picture for my posts was something I spent way too much time on. Way way way too much time, longer sometimes than I actually spent on writing.

This go around I’m not going to sweat the pictures as much. Previously I would spend hours searching the Internet for pictures to use, editing it and making sure I gave the photographer the proper credit. This go around pictures will still be present but for the most part will just be ones I take myself. And if I don’t have a picture that adds to the post I’m not going to let that stop me from posting.

My passion is writing, not photography. Therefore I want to spend the time I do have for blogging writing since that’s the whole thing about blogging that rejuvenates me.

And since blogging is something I’m choosing to do and not something I have to do I want to make sure it’s as rejuvenating as it can be!


So with those changes being made I’m looking forward to blogging regularly and just making it work!

Before I go here’s a couple of posts that inspired me to get back to it and  make blogging work in my life:

On Breaking the Blogging Rules

Excuses and Updates

Thanks for reading! “See” you soon!

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Reflecting and Reevaluating

I know a new year doesn’t guarantee a change but I do think it’s a great time to reflect and reevaluate things. As I reflect on this past year I realized I wasted A LOT of time on I don’t even know what.

For example I spent literally weeks and days and hours researching and agonizing over essential oil diffusers thinking they would be the cure all for my son’s frequent colds and the chaos that occurs when he is sick. I finally bought two and have literally used them for less time then the time I spent researching them. Turns out they didn’t make life easier and cure everything like I thought they would. Even when I did use them my son still kept getting sick and the chaos keeps going on.

Same thing with these amber necklaces to help my daughter teeth and me get rid of systemic inflammation. I spent so much time researching and trying to decide which ones to get and we don’t even wear them. Turns out I’m going to have to eat healthy and exercise to get healthy and my daughter is going to drool and have pain while she teeths, no matter what necklaces we wear.

The list of things like this could go on and on this past year, wasting time trying to escape reality, neglecting the people I care about while trying to find ways to protect myself from things being hard and always trying to find some elusive way to have complete control of everything. All while forsaking the things that will really help and bring about change.

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Moving into 2015 I really want to spend this time I’ve been blessed with wisely. I know it sounds frivolous with diffusers and necklaces but based on the amount of time I wasted and the stake I was putting into these things to make things easier I realized there’s a lot more going on in my heart than what was meeting the eye.

My prayer is that this year will be a year of finding true contentment in what is, freedom from fear of what “could” happen, and a year where some of mine and my husbands innermost hopes and dreams come true.

I hope everyone who reads this has a blessed New Year and that 2015 will be a year full of positive changes and progress!

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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.
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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 :-)

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