A new season of life (and choosing to give some instead of none)

It’s hard to believe that an entire year has passed since I last posted! I’ve had a few posts sitting in the drafts folder yet somehow I never managed to press “publish” as often as I’d planned.  

I’d even delayed to write this post because it seemed impossible to catch up on what has taken place over the past year and picking things back up after taking such an extended break felt overwhelming. Even more puzzling was that I couldn’t pinpoint exactly what had caused me to quit blogging altogether.  It wasn’t until I read this post over at My Home Tableau, that I realized why.  I too am a procrastinating perfectionist who struggles with what Johanna accurately describes as, putting things off when I don’t feel I have the time to do it the way I feel it should be done or at least how I would like for it to be done”.   I could relate completely to what she was saying and the solutions and commitment she shared in her post made quite an impact on me.

Because I was struggling to put all the time that I’d like to into blogging, I had decided to neglect it completely. Because I was frustrated with its look and the hurdle of redoing it, I had decided to avoid it altogether, determining to post again only after the makeover was complete. Because the setting wasn’t ideal, I procrastinated.

But the following statement made me realize those reasons were silly. She said, I refuse to let the year go by without making some progress simply because I can’t put all the time into things that I’d like to.”

I didn’t want another year to pass without any progress in blogging (or any other area of my life for that matter!). Even though I can’t put all the time into blogging that I’d like to right now, some blogging is better than not blogging.  Even if the posts may not be against the aesthetic backdrop I’d prefer, each crafted word can still be used to paint a dazzling picture. But if I keep waiting for perfection I’ll never seize the opportunity to begin.

Johanna finished off her post by saying, I’m committed to believing that some is not just okay or good enough, but that it is just right for me in this season of life.”

This season of life.

That subject has been on my mind since October when the birth of our newest addition brought along plenty of changes, placing me in a different season of life than where I was even just four months ago!  We are thrilled to have Grace as part of our family.



Johanna’s post was certainly timely for me and just the encouragement I needed to jump back into blogging.  During this season of life I’m not committing to a certain number of posts per week on a specific number of days, but I am committing to some.

Your Journey: Are you a procrastinating perfectionist?  If so, what solutions have worked for you to overcome it? 












A letter to my daughter for her 4th birthday {Five Minute Friday}

It’s Five Minute Friday!* Where a group of us join together for five minutes of writing without worrying about if it’s just right or not, hosted by the lovely Lisa-Jo.

Because, “…often our perfectionism gets in the way of our words.”  -Lisa-Jo Baker
And I’m excited to jump back in again after my extended break (my previous Five Minute Friday post was last April!)

Today’s Prompt: SMALL
GO

Dear Sophia,

Your birthday is coming and you can’t wait but I wish that time could stand still. It’s flying by faster and faster and the rush of it can be overwhelming.
It seems like just yesterday that you were a tiny bundle I carried home with me. I was thrilled be cradling you as we exited those hospital lobby doors together, my prayers and dreams come true!  Even though bringing you home right away was much scarier than I realized it was sweeter than I could have ever imagined.

Today, the dimply curves of baby skin are slowly fading from your face and I wonder how it’s already been four years?

I love to watch the tiny fingers of your petite hand wrapped around a crayon, coloring a picture in your princess coloring book (and I find it adorable that you’re left handed like Daddy and big sister!).

Stay small sweet Sophia and climb into my lap, let’s read another story.

Because you’ve taught me it’s the smallest moments that make up the most beautiful memories and we have more pages to discover together.


I’m discovering the truth of what they say: some days do seem long but the years are much too short. So let the hours drag on and may time linger because I know I’ll blink and four more years will have passed. 

Stay small sweet Sophia and climb into my lap.


Love,

Mommy
STOP



One Word 2014 {A New Year’s Resolution}

Last year was my first time participating in OneWord 365.   Instead of making an entire list of New Year’s resolutions, the idea is to choose one word that will be a central theme or focus throughout the new year.

Last January, my word was a fairly easy choice because I knew that change was on the horizon for our family. With many unknowns before us, my spirit was growing restless in the waiting.

I desired to rest.  

Choosing my word for this year hasn’t been as easy.  This post was beginning to collect dust from sitting in the drafts folder, and I considered not participating at all.  

Sometimes words that are slowest to come are the ones you need the most.

I looked up synonym after synonym of words that I wanted to be the center of this year. Nothing jumped out at me. In one final attempt, I decided to look up an antonym for a specific word.

This word whispers lies, haunting the heart and mind with confusion. It raises suspicions, clouding thoughts with judgment or fear. Masquerading as a refuge, its walls hold many captive.

It asks more questions than it answers.

It’s a word I’ve carried around far too long, one that I don’t want to follow me into the new year.

Doubt.

This year, I’m choosing to replace the doubts.

With what?

Oxford Dictionaries defines confidence as: the feeling or belief that one can rely on someone or something; firm trust; the state of feeling certain about the truth of something.   God’s Word calls it hope.

I choose confidence…

 …in my relationship with Christ, believing His love and goodness toward me.

…in my marriage, obeying His example of love.

…in my parenting, leaning on Him for strength.

…in my relationships with others, fulfilling as He calls.

…in each moment, ignoring whispers of doubt.

…in every situation, fearing the Lord, not man.

…in every circumstance, remembering His promises to me

…in His provision, knowing He will make a way.

…in every opportunity, relying on His power alone.

…in His plans for our family, abiding in His grace.


This year I choose confidence in Him.











2013 Blogging Year in Review {This Journey Our Life}

As those of you following along here already know, I’ve only posted once since April. On this last day of 2013, it’s hard to believe it’s already time for the {Blogging} Year in Review.  It seems like just yesterday I was sharing the Top Ten Posts of 2012.

I’m thankful for readers who still check in when writing is sparse, for followers who still embrace every post shared. These top ten posts are based upon what each of you preferred reading here throughout this past year.

 Top Viewed Posts of 2013

10. For preemie parents.  An introductory post for Parents of Preemies Day 2013.  As parents of preemies there comes a time that we are celebrated in honor of all that we have mourned.

9.  Fear of Change {A Five Minute Friday post}This post was written for a Five Minute Friday in August of 2012.  Little did I know then how God was already working, already changing.  I’m thankful that “He has made a way in the wilderness and rivers in the desert.”

8.  Embarking on A Journey (the day I found out my daughter was blind).  On Day 2 of the 31 Days of Support Series, I shared the moment I first realized my daughter was blind.

7.  What mama did (the embracing).  This post was written for a Five Minute Friday, following a four-day series Lisa-Jo had on her blog entitled “What Mama Did.”

6.  Journey of FaithThis is the post in which I first shared the story of Cami’s premature birth; it also provided the inspiration for this blog and its name.

5.  A poem for parents of preemiesThis poem is dedicated to every parent of a preemie.  Whether you were blessed to bring your baby home, or your heart still aches with grief because you couldn’t; whether you’ve walked the NICU journey in years past or are currently trudging along its path. Today—every day—you’re celebrated. (It was also featured here on the Graham’s Foundation blog for their second annual Parents of Preemies Day.)

4Walking by Faith: Our journey continues.  The post in which I shared of our plan to move to South Carolina in order for Cami to attend the SCSDB (and the last post before my blogging hiatus). From Rudy’s job to Cami’s transition at school, the Lord has clearly guided every footstep, providing for every need along our path. 

3. A Father’s Day Poem for My HusbandThis poem was written as a gift for my husband for Father’s Day (2012) to express my gratitude for the man he is.  With the number of people brought to my blog via Google searches for “poem for husband” or “father’s day poem for husband” it is no mystery why this poem remains in the same spot as last year!   =)

2.  31 Days of Support for Your Special Needs Parenting Journey.  The most viewed post for 2012, this post is a compilation of the entire series that was written and blogged for my participation in the 31 Days challenge, hosted annually by the Nester.  

1.  100 Ways You Know You’re A {Special Needs} Mom.  Inspired by Lisa-Jo Baker’s 100 Ways You Know You’re A Mom, I asked fellow special needs moms what being a mom looked like for them.  It turns out that it looks similar for all of us!  This list  includes what real-life special needs moms shared with me, in addition to my own thoughts and ideas, all based on actual events. Take a moment to read and you’ll notice an extension of the list forming in the comments too!

This year has been one filled with change, during which time it was quiet around here. I appreciate your support along the journey, and I’m eager to share with each of you who continue following This Journey Our Life throughout 2014.




Singing for Joy

Much has taken place over the past several months of my blogging hiatus.  The break began unintentionally, but I’ve enjoyed a much needed time of rejuvenation.  I plan to return to writing here again, and I have much to share in the weeks ahead.  Today, I wanted to begin by sharing a brief update on Cami.

As many of you remember, we moved this summer in order for Cami to attend the South Carolina School for the Deaf and Blind (SCSDB). When she was accepted as a student in August, we learned of her exact placement  in the school (based upon her evaluations and testing).

She attends the special education program offered at the SCSDB.  It is still a part of the SCSDB, and just like each of the other separate schools (the School for the Blind and School for the Deaf) it is in a separate building on the campus. Within the school, classrooms are divided by those who are visually impaired and those who are deaf, with the majority of students having more than one disability.  This school offers more specialized instruction, and each class is taught by a special education teacher who is also a teacher of their respective field (blind or deaf). 

Cami has been thriving in this environment which is similar to her placement last school year, this time with a program and education more suitable and individually tailored to each of her specific needs.

In a recent re-evaluation meeting with her educators, we discussed giving her more opportunities to develop her skills, allowing her to grow and progress as much possible.  This was addressed mainly because  she is considered to be a high functioning student in her classroom setting, and they don’t want to restrict her potential.  They specifically mentioned giving her more opportunities to interact with students who attend the School for the Blind, its atmosphere more like a mainstream classroom setting.  

We agreed.

And today she embarked on this path of opportunity, taking a tiny first step toward a new direction.


For the first time, Cami will be participating in an extracurricular activity.


When her teacher contacted us to see if this would be something we’d be interested to have Cami involved in, there was no question in our minds that it would be a perfect fit for her.

Cami is now a singer in the chorus at the School for the Blind.

As a 4th grader, Cami is one of the youngest among the middle school through high school age participants, but we are excited to see her eagerly embrace this new challenge. Her teacher sat with her during today’s rehearsal and will work toward having Cami sit through future rehearsals independently.  

We continue to thank the Lord for allowing Cami to progress as much as she has, and we continue to receive assurance that she is right where she belongs.

Walking by Faith: Our journey continues…

Last year, after receiving the news of Cami’s more recent diagnosis we continued on with another search. Our goal was to find an educational environment that would allow Cami to develop to her fullest potential while providing the necessary tool and resources appropriate for her needs.  

Last week, I shared that Cami was placed in a resource room for the 2012-2013 school year.  This placement was simply the first step in implementing an important decision we had made regarding her education; it was a temporary solution until we determined what environment would best suit all of her needs.

In our quest to find the right school for Cami, we plunged into conducting our own research. We discussed options with specialists, read countless materials of information, researched online, visited several different schools, and spoke with a variety of people experienced in working with children who have needs similar to that of Cami’s. 
Each person that we talked with had no previous knowledge of what had been discussed in our separate conversations with others, yet a recurring suggestion continued to be made. As we weighed the information we had gathered against our own personal observations and first-hand experience, one fact continued to stand out above the rest. 
Though it’s undeniable that Cami has additional needs surrounding her more recent diagnoses, we had to acknowledge the fact that many of her struggles stem from a result of her primary disability.
Suddenly, the answer became clear.   

She needed to be in an educational setting that was able to provide the proper supports, tools and resources directly related to her vision impairment, while offering a learning atmosphere appropriate for the needs surrounding her secondary diagnoses as well.

We realized that recurring suggestion needed to become a reality. 
Throughout our quest for answers we asked the Lord for wisdom.
And He gave.
We asked him to clearly guide us.
And He led.
After much prayer, the Lord has confirmed to us that His will for the next step in our lives is to move to South Carolina in order to allow Cami the opportunity to attend the South Carolina School for the Blind as a non-residential student. We will be moving June 1.
We are stepping out in faith, trusting the Lord to meet our needs in providing a job for Rudy and we are excited to see how He will.  We ask that you’d pray for that along with us.
Please also pray for the overall transition into a new home and new school (for Cami).  If you’ve been reading along for any amount of time you know that she doesn’t handle a change of routine or changes in general very well.  We’ve already begun to prepare her as best we can but it’s hard to say how it’ll go until it happens.  Please also pray for Lucas and Sophia to adjust to all of the changes this will bring for them as well.
We rest in knowing the Lord has faithfully guided every footstep, clearly marking the path He wants us to take.  Placing one foot in front of the other in faith, we are thrilled to follow Him into the next phase on this journey, our life.
 

when the mainstream classroom wasn’t appropriate for my daughter {An update on Cami}




This time last year we were knee-deep in the trenches with a variety of struggles Cami was facing in almost every area of her life. Throughout her entire school year Cami struggled academically, socially, and emotionally (just to name a few!).    

We waded through each situation of each day with a feeling of helplessness. At night, we pillowed our heads in exhaustion from the amount of energy required in addressing and dealing with each struggle, not to mention the toll it was taking on our entire family.

Between her struggles, our research, extra appointments, and repeated, extended phone calls from her teachers it seemed to us that no end was in sight. We bathed each day in prayer, pleading for answers.

We were desperate for help.


Desperate for hope. 

Because at that time it seemed there were neither. 

One of our main concerns driving us to seek further answers was how far she was falling behind her fellow peers in school. We’d been under the impression that the gap between her and her schoolmates would begin to close more with each passing year, hopeful that it would.

Instead, that gap was widening.

She wasn’t making progress in any area.  She was at a standstill in her overall development, a fact further exacerbated by some new, emerging emotional and behavioral tendencies.  As a result, she had begun to take some steps backward.

It was clear to us that it wasn’t from lack of supports in place.  With the amount of her therapies totaling 21-22 hours of extra support, in addition to her having a one-to-one aide, there was no question in our minds that Cami was receiving excellent help.

We were puzzled.

The more frequently she displayed signs of exhaustion and anxiety, the more we realized that something needed to change.

But what?

Cami’s recent diagnosis provided another piece to the puzzle.  A puzzle we were desperately trying to piece together in order to understand the best method and approach through which to meet her unique needs. 

After spending an extended time voicing our concerns to the specialist and discussing Cami’s needs and strengths in detail, we finally felt that we had begun to receive an explanation behind much of her tendencies. This information helped us to better understand the importance of focusing on her strengths, confirming to us that Cami needed to be in a different educational setting.

We were certain that Cami would thrive in a more focused educational environment, one that could be tailored to her specific needs. It would need to be an environment that would enable her to learn necessary academic and social skills, but through instruction appropriate for her. It would need to be a place where she would be challenged to succeed and master skills, but not pushed or forced beyond her capabilities.  We took a step back to determine what environment would be the least restrictive for her learning needs.

It would have to be outside of the mainstream classroom.

At the beginning of this school year, Cami was placed in a Special Education Resource Room. She spends the majority of her school days in this room, but still participates with a general education third grade-level class, for non-academic subjects such as Music, Art, lunch, and (adapted) P.E.

The results have been incredible. 

Overall, Cami has made some significant strides in almost every area (many of which I plan to share in upcoming posts since I’d like to highlight each one individually, as well as the fact I don’t want to make this post too long!).

Did this magically fix every struggle she faces?

As much as I wish it did, it doesn’t.

There are still some aspects in her educational needs that we are concerned about, and we continue to pray for wisdom regarding those as well.

Does that mean from this point on she’ll accomplish every milestone we desire for her to meet?

As much as I wish it did, it doesn’t.

All we can do is provide the necessary support our daughter needs to take the next step—

today.

And by God’s grace we will.


 

 

 

 

 

 

 

what you need to know when your baby comes home from the NICU {Life After the NICU}

It’s Five Minute Friday!* Where a group of us join together for five minutes of writing without worrying about if it’s just right or not, hosted by the lovely Lisa-Jo.
 
For today’s Five Minute Friday I’m doing something a bit differently than my usual five minute writing exercise.  I’m using the five minutes to share about a wonderful resource since that is what first popped into my mind after reading today’s prompt

Today’s Prompt:  AFTER

GO


 It only takes a simple observation of watching Cami climb the steps to her school bus to trigger memories of her days in the NICU, reminding me of exactly how far she has come.  

We had no idea that the day we brought her home from the hospital was also the day we embarked on a different, longer path 

We we’re leaving behind the before and entering the after.

Because the NICU journey doesn’t end on discharge day.*

Life after NICU

 Life After NICU was founded in October 2011, by moms whose children were hospitalized at Rush-Copley Medical Center in Illinois.  Their site states that, “Life after NICU is a support group for parents at all stages of the NICU experience, from pre-delivery until long after heading home. Our site and online forum provide parents with a safe space in which to share personal stories, ask questions, find resources and information, and process emotions about their experience. We want others to know that they are not alone, and that they will get through it.”*


I wish that there had been such a resources around when we brought Cami home at the end of 2004 but I’m glad it’s available for other NICU parents to utilize today.

Whether you’re a NICU parent yourself or know someone who is I hope you’ll pass on this helpful resource.  Life After NICU would love for you to help spread the word about Life after NICU (support group) by repinning this picture. Their desire is to find more members of the NICU “club” to help them know that they are not alone. 


Go HERE to repin picture.
  
STOP

Your Journey:   Are you a NICU parent?  If so, what resources did you find most helpful after you brought your baby home from the hospital?  I’d love to hear what you have to share!

*quoted from the Life After NICU website