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.
 

Of chocolate fudge brownies, ice cream, and friendship {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.

Today's prompt:  FRIEND

                                                                        
GO

The shock of the news punched me in the gut.  Hurt sliced through my heart like never before and my body ached with grief.

Because wounds afflicted in anger cut deep.

In one brief moment our lives had changed and the securities we had assumed as guaranteed had been yanked out from beneath us.  After sharing the news with our parents, there was no question who I’d call next.

As I struggled to speak through my tears she patiently listened before speaking the words she knew we needed to hear.

“Come over.”

Arriving to their house was like coming home after a long journey.  The lights from their house spilled out through their back door, inviting Rudy and me to step inside. As we walked through the kitchen into the dining room, the smell of warm chocolate wafted through the air.

The menu from dinner has faded in my memory, but I’ll never forget the dessert.

The homemade chocolate glaze perfectly complemented the warm fudgy brownies topped with a hearty scoop of mint-chocolate chip ice cream towering high above the bowl.   It was comfort food in highest form.

To this day I can’t eat a brownie without that night crossing my mind, but it isn’t the painful news I remember.

It’s my friend.

Because gifts offered in kindness and love heal deeper.

And friendship is one of the greatest gifts of all.

STOP

Your Journey:  What small act of kindness from a friend was huge to you?  Feel free to share your story about it in the comments! 

Photo credit: chocolate-covered Katie

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 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. 

Source: lifeafternicu.com via Aimee on Pinterest

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

 

A guest post, link love, and a youtube video {This Journey Our Life around the web}

As I mentioned, I enjoyed a much needed break during the week of Spring Break, but I'll be honest I'm having a hard time getting back into the routine of writing and blogging.

Currently, I have several posts in the works and looking forward to sharing them with you once they're ready.   In the meantime, I thought I'd share the recent places you can find This Journey Our Life around the web.  

A guest post 

I guest post regularly for one of my favorite websites, Different Dream, a gathering place for parents of children with special needs. This post shares a recent victory for Cami, allowing her to make another stride towards independence.  

Link love 

 My friend, Laine at It's Just Laine, shared my 100 Ways You Know You're A Special Needs Mom post as part of her recent favorites list. I appreciate the kind words she had to say about it and I know as a mom to both a child with complex heart defects as well as former preemie she relates to much of it.  

I am honored that another friend, Erin at Naturally Erin, also shared the list as part of her Best of the Web post . I loved hearing her thoughts on it and am thankful for her kind words.

A Youtube video 

Recently, Cami had a field trip to the Kennedy Center and since then has repeatedly requested to hear Fanfare for the Common Man (Copland). On Sunday, she she kept trying to play her version of it on the piano (focusing mostly on the percussion parts) so Rudy decided to help her out by playing the brass lines. Below is a video of their impromptu performance of the song:




Having trouble viewing it?  See it here.

Thanks for taking time to read (or watch!) This Journey Our Life around the web!

when raising your {special needs} child seems mundane

It's been kind of quiet around here because I was enjoying our Spring Break!   We spent a week visiting family in North Carolina while enjoying a much needed time of relaxation. 

It was refreshing.

Well, except for the trip to the emergency room. 

Surprisingly, it wasn't one of my children this time...it was me.   A CT scan confirmed the source of my severe pain was from what we had suspected: a kidney stone. 

As I lay on the hospital bed writhing in pain, I couldn't help but think of all the families whose lives are affected daily by a loved one's chronic pain or the parents whose child is hospitalized indefinitely.

Thankfully, after only 3 1/2 hours I was able to head home armed with a prescription for pain medication for any future episodes along with an invaluable lesson.

One trip to the ER made me realize how much I had begun to take for granted. Though Cami has her fair share of struggles, these days the majority of them don't directly affect her health or require urgent medical care. Because she hasn't had to be hospitalized in several year I've grown comfortable, assuming that we're past that stage of life.   

I had forgotten what a gift the ordinary days are, allowing myself to consider them mundane.

But that day in the ER caused me to remember the prayers I'd whispered long ago, when I'd said I'd give anything for an ordinary, uneventful day.
 
And every day we live such one--

sublime.

Your Journey:  What is something that has helped you avoid taking ordinary days for granted? Feel free to share your heart in the comments!

100 Ways You Know You're A {Special Needs} Mom

This past September, I got a good laugh out of Lisa-Jo Baker's 100 Ways You Know You're A Mom (not to mention I had personally experienced #8, #44, #71, and #80 on her list).

I am blessed with the privilege of being Mommy to three beautiful children, each of whom I love more than words can adequately express. Much of the space on this blog is dedicated to sharing about my journey of raising a child with special needs, my oldest.

Because the day I was ushered into the world of motherhood, it was as a special needs mom.

Inspired by Lisa-Jo's post, I began writing down ways I know I'm a {special needs} mom.  I had come up with a fairly lengthy list on my own, but I wanted to make sure I included other mom's perspectives.

I wondered what being a special needs mom looked like for them.

As it turns out, it looks the same for us all.

Whether you're a special needs mom or someone who'd like a peek into what life is like for those who are, I'd love for you to take the time to read through all 100 Ways You Know You're A {Special Needs} Mom.

  

1.You’re on a first name basis with everyone in your insurance billing department.
2. The pediatrician's office keeps your child's file at the front desk for easy access.
3.You love when people ask you questions.
4.You hate when people ask you questions.
5.Trips to the doctor have become more frequent than trips to the mall.
6.The only thing constant in your life is change.
7. You wish you had the power to read minds, because then you’d read hers.
8.You haven’t had a full night of rest since….
9.(You don’t know because you’re too tired to remember.)
10. Some days you want your mom.
11.Your heart is so filled with love it could burst.
12.You believe strongly that your child has taught you more than you’ve taught them.
13.You’ve created an alter ego for important meetings and appointments.
14. You struggle with feelings of guilt.
15. You’re braver than you ever dreamed possible.
16.  Your eyes still well up with tears when your child gets on the bus
17.  You despise when people call it the short bus, especially because it’s not.
18.  At follow-up visits to the hospital, you have a growing fear your child will be re-admitted to the NICU.
19.  Your life can be categorized into two segments: before your child’s diagnosis and after.
20.  You’ve vowed never to take the ordinary days for granted.
21.  Some days you do.
22.  You launch into detailed explanations of your child’s diagnosis in response to being asked their age.
23. You have personal fans and cheerleaders, otherwise known as family and dear friends.
24. You never underestimate your gut feeling and have come to respect it.
25.  You own at least one mascara-stained pillow case.
26.  You can recite the name, dosage, and frequency of medications in your sleep.
27.  You gauge your child’s moods by their breathing patterns on the trach.
28.  You quote a verse every morning while waiting for the school bus .
29.  The smell of hand sanitizer causes the most vivid flashbacks from your child’s hospital stay.
30. You color code notes based on each individual therapists, doctors, specialists, and appointments.
31. One brief moment of eye contact from your child speaks to you louder than if they’d screamed, and you know they were saying,  "I love you, I trust you, and you’re my best friend”.
32. You notice the panic on the faces of other parents watching your child play at the park.
33. Getting an uninterrupted night of sleep causes you to become alarmingly frantic in the morning!
34. You don't go anywhere without your three ring binder of referrals, records and insurance paperwork.
35. You’ve learned the strongest fighters come in the smallest packages.
36. The therapists and teachers working with your child know more about what’s going on in your life than your friends do.
37. You have panic-driven thoughts of being hit by a bus and immediately go into overdrive to make sure others are competent to care for your child by writing detailed care notebooks.
38.  The phrase “Good job using your words” has become your standard response in conversation with anyone.
39.  You know enough special education laws to pass the bar exam.
40.  You’ve learned to see beauty in the simple.
41.  You realize the danger of comparison.
42.  You’re most embarrassing situation involves over-explaining your child's unique, heightened sense of smell while assuring the person they don’t stink at all.
43.  A thorough search through your purse produces gauze, feeding tube extensions, syringes, medical tape and a host of other medical supplies...but still no keys.
44.  You couldn't be more proud of what he said about his sister.
45.  You try to predict your child’s occupation based upon their current fixation/obsession.
46. You have prayed your child through being able to live, breathe, drink, eat, see, hear, sit, crawl, stand, walk, run, speak... and a million other things!
47. It hurts every time you hear someone complain their child won’t stop talking.
48. You’re fluent in reading acronyms such as OT, PT, SPT, SID, ASD, EOE, CP, PDD, TBI, IEP, O&M, or EA/TEF (just to name a few).
49.  You have a love-hate relationship with Google.
50.  You have the pharmacy number on speed dial.
51.  You pause to watch the sweet young lady with down syndrome who lives in your neighborhood get off the bus, wondering what the future holds for your child.
52.  Somehow you always end up carrying your daughter’s cane more than she does.
53.  Your life revolves around your child’s nap schedule.
54.  Calming your child during their public meltdown in Target while curious onlookers observe, elevates your heart rate and causes you to sweat more than a Zumba workout.
55.  You wonder what your life would be like unaffected by special needs.
56.  Due to an extended period of creatively dealing with your child’s sleep issues, your children now refer to Tums as “sleeping pills”.
57.  Your medical expenses regularly surpass your mortgage.
58.  The movies Temple Grandin, The Brooke Ellison Story, and Autistic-Like inspire you to never give up.
59.  You drive the absolute longest way to church (even if you are late) to avoid a meltdown over a change in routine.
60.  You celebrate your child saying "NO" simply because it means they’ve voiced words.
61. You think your child is braver than you.
62.  You dread homework more than your child does.
63.  Your creativity and adaptability surprises you.
64.  You couldn’t do any of it without his help.
65.  Seasons at your house are: Summer, Fall, Winter and IEP meeting.
66.  You don’t laugh at jokes people tell about Braille being on drive-through ATM’s.
67. You second-guess your decisions
68. You readily admit to using bribes.
69.  You wear the titles of teacher, advocate, mediator, therapist, nurse, and translator.
70.  Mom is your proudest one.
71.  “She loves toys with music and lights” is the one statement you regret saying most.
72.  You buy enough batteries to personally keep Radio Shack in business (see #71).
73.  You are your child’s voice.
74. You’ve been asked countless times by others if you’re a nurse because of your medical knowledge.
75. You take it personally when someone says the "R" word.
76. You notice every time someone stares.
77.  Your biggest fear is double-booking appointments and missing one as a result.
78. You’ve witnessed strength in your own child that is stronger than your own
79.  You dream about the day you’ll be able to return all of the help you’ve been given, already planning what you’d do.
80. This dad’s writing makes you cry.
81. You know more medical terms and jargon than a third-year medical student.
82. You’re convinced that IQ is a meaningless number.
83.Your first thought after hearing a screaming child in a store is, "Maybe they’re autistic?"
84. You feel like a walking medical dictionary.
85. You pray daily hourly for strength.
86. You wouldn’t wish this life on anyone.
87. You wouldn’t trade it for the world.
88. You meet every challenge with firm resolve and determination.
89. You’re elated when your child proves doctors wrong.
90.  You hear Him whisper softly.
91. You glare at the men in the booth at IHOP for making fun of the adults seated in their dining section  who are all residents of a group home for the disabled.
92. You regret not having the courage to say something instead.
93. You celebrate different.
94.  You relish hand-squeezes.
95. You’re thankful that your stubbornness and persistence have finally found a use.
96. You’re guilty of underestimating your child’s capabilities and abilities.
97. You've lost count of the number of x-rays, CT scans and MRI's, each with enough reports to wallpaper your whole house, garage and barn.
98.  You get a sick feeling in the pit of your stomach when the number of your child’s school flashes across the caller I.D.
99. Today you feel like giving up.
100. Tomorrow you’ll get up and do it all again.

Your Journey:  See anything you think should be added to this list?  If so, let me know...I'd love to hear!   

The preceding list includes some of what real-life special needs moms shared with me, in addition to my own thoughts and ideas, all based on actual events. To protect their privacy I'm not sharing any names, but I do appreciate each of the ladies who helped to contribute.  

Disclaimer:  Some affiliate links were used in this post, providing you the opportunity to purchase some of my favorite products.

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