Signs and Struggles

When I sit down to think about the ways to explain some of MJ’s issues it is hard to know where to begin. You may hear or read some Autism “signs” and think to yourself “well my kid does that sometimes – it’s not unusual” (a common reaction). I understand what you are saying but this is different. All of us have a characteristic or behavior that could be in the description of a child with Autism – perhaps we even have two. What makes it Autism is the number of issues, levels or severity, and patterns in which they occur. I don’t know how to explain what we know about our son without you living in our shoes and experiencing it daily.

Ellen Notbohm (an Award-winning author and mother of sons with ADHD and autism) writes it beautifully in her article “Ten Things Every Child with Autism Wishes You Knew”. Below I have borrowed Ellen’s words to explain to you specifically some of the struggles MJ deals with on a daily basis.

My senses are out of sync.

This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belliger­ent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me.

My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.

And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.


Distinguish between won’t (I choose not to) and can’t (I am not able to).

It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear “*&^%$#@, Jordan. #$%^*&^%amp;*.” Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.


I’m a concrete thinker. I interpret language literally.

You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.”

Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.


Listen to all the ways I’m trying to communicate.

It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.

Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not under­stand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.


Picture this! I’m visually oriented.

Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn.

Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations.

I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and informa­tion presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.


Help me with social interactions.

It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”


Identify what triggers my meltdowns.

Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented.

Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me.

My behavior may have a physical cause. Food allergies and sensi­tivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.


Love me unconditionally.

I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.

Three words we both need to live by: Patience. Patience. Patience.

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people?

I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.

These are just some of the things that we have discovered in MJ and we live with daily in our home. It’s not everything – but it’s a great start and I love the way she wrote it from the child’s perspective. So can I ask you a favor? Next time you are in a grocery store or a park and you see a parent struggling with a child – can you say a little prayer for them?…they just might be struggling like MJ and our family. 

If you are interested in the article “Ten Things Every Child with Autism Wishes You Knew” by Ellen Notbohm in its entirety it can be found here.

Intervention & Understanding

When we first started noticing things with MJ before he turned 3 years old we were told by many that he was “quirky” and just a bit “different”. Finally after so long I realized that although these people had good intentions and were trying to be encouraging – I needed to follow my mother’s intuition that God gave me. So, when MJ was 3 ½ we took him to see his pediatrician to discuss our concerns. This doctor had not even known MJ that long due to MJ’s previous doctor leaving the practice a few months prior and he stepping in to take her place. He asked us a few questions and talked to us about the different possibilities of issues/diagnosis. The doctor was actually able to observe some of MJ’s odd behavior in the office.

I will never forget that day in the exam room over a year ago in June 2011. The doctor was very sensitive to our concerns, and cautious about what he said and how he worded things. I can still remember crystal clear the doctor watching MJ out of the corner of his eye while speaking with us. It was written all over his face – he was concerned – even looked a bit heartbroken for us knowing what the future could hold. Ultimately he completely validated our concerns and recommended MJ be evaluated by a Development Pediatrician for an Autism Spectrum Disorder. Something else that stuck with me was his words in an attempt to be encouraging “Kudos to you as parents for catching it so early. Most kids don’t get diagnosed or the help they need until they are a few years into school. You guys are great parents for being so tuned in to him. Early intervention is key”. Knowing what I know now – sometimes I have to wonder are children slipping through without help due to their parents “not noticing” or is it because the parents hit brick walls and their concerns are dismissed, cast off, or even convinced they are bad parents? No one knows their child better than the parent and I find it hard to believe that so many children are diagnosed at a later age simply because “it wasn’t noticed”.

Autism can progress as children get older and the earlier they can get help – the better off they are for a good future. I almost scoff at the term “early intervention” knowing what I know now over a year later. The experts say early intervention is key to helping an autistic child - but yet it takes over a year on a waiting list to be evaluated for a diagnosis. The experts say early intervention is key – but they make you jump through 20+ hoops to get the help your child needs. The experts say early intervention is key – but they severely limit what they do for your child and refer you around in circles trying to cast you off on someone else’s organization trying to save their own time and budget. I don’t want to sound ungrateful or resentful – for goodness sakes our family is still towards the beginning of this process. All I am saying is that my eyes have been unbelievably opened to the issues and gaps our system has with taking care of these precious kids. It breaks my heart.

We have learned in so many different ways how early intervention is key. Unfortunately we have learned through hearing of others struggles. God has placed people in our lives recently to share their stories with us. Most of them did not get early intervention for their kids, either due to late diagnosis, or the services just were not readily available. There are stories of two particular precious children that really engraved on my heart recently. One of them completely slipped through the system and didn’t get the help he needed – and now as a young adult he struggles with drugs, wrong crowds, and is in and out of jail – all because he was not offered the services he needed to help him learn the tools to cope with his condition to get through life. The other sweet child barely got help in time. Now a young teenager – he slipped through the system and got a late diagnosis a few years after he was in school. His parents struggled for months and years to get him the help he needed – and at one point this child even considered suicide.

There are so many instances where a parent may share a concern or explain to a loved one what is going on with a child and it gets dismissed. Some of my favorites (sarcasm) that are personal experiences I had sharing my concerns about MJ – “But he is so smart” – “But he is so happy and fun” – “But he talks so well”. The tired, frustrated, and end-of-my rope mother in me is left thinking “so people think in order to be on the Autism spectrum a child must be dumb, or sad / depressed all of the time, or non-verbal”. It leaves you feeling sad for your child, misunderstood, and completely and utterly alone. Listen – I know people love our family and love our children and want nothing but the best for us. I understand that people want to be encouraging, or possibly caution others from falling into the horrible trap of “hypochondriac” mode of self-diagnosing or self-treating and over-reacting. I get it, and I appreciate it. I once was the mother on the other side who didn’t understand why all of these parents felt they had to be such “advocates” for their children. Now I totally get it. I get both sides – and I see the gap.

That is why I am sharing MJ’s story. That is why I write what I write. Autism needs a voice. I want to bridge that gap between the mother who’s been there advocating for her precious child and the mother who looks from the outside going “what in the world is she doing all of this for I don’t get it”? What better way to learn and find out then to read about the personal experiences of a family who is there?

My goal is to write more frequently. I want to promise a set schedule of posts but in all honestly our lives are not in a place where I can do that yet. We are still finding our balance. I don’t want to write so often that you lose interest in my posts because it takes up too much of your time – but I need to write often enough that you do keep interest in our story – so hopefully it can touch the life of you or someone else you know.

This week you will see posts about some of the typical struggles of children with Autism and why they are often disguised. I will also share with you some exciting things that we are experimenting with that may help MJ with one of his daily struggles. We’ll give you updates and news as it comes in hopes that our story will help others somehow, some way, for some reason. Finally – we will share with you how our faith gets us through – because with God in our lives we can find direction, peace, and even joy in these circumstances.

Stay tuned…and God Bless.

BIG Meetings

I am so grateful for all of the resources and support that is available to children and families affected by autism. I do have to say though that the amount of information, appointments, testing, evaluations, conversations, applications, waiting, contacting multiple agencies, and red tape you go through is absolutely nerve racking and exhausting.

MJ was in a private preschool last year, and although he made great improvements in his language – we felt our concerns were not being addressed and we made the decision that the school we had him in was not the place to get him what he needs. Since MJ is 4 ½ years old we were encouraged to request early intervention through our public school district rather than waiting until he qualifies for kindergarten (the age limit for kindergarten is 5 yrs old by 9/1 – MJ will be 5 in Dec.). We’ve been told by several parents who have been through the process that you must advocate for your child and be very intentional about making sure they get what they need, which will take a lot of energy, educating yourself, and seeking people resources to support you and advocate for your child through these processes. We want to do whatever we can, but being so new to “the process” it seems like we are at the base of a mountain ten miles high…and we don’t have our hiking gear.

I don’t have time to get into how early intervention works or all of the details right now (sorry!) but I plan to blog about that soon! To put it simply MJ should be eligible to receive early intervention education to get him on the right track for success when he gets to “official” school age. The Buckeye School District has a preschool that could provide him what he needs. There is a lot of red tape, appointments, and specialists through the school district, meetings, and evaluations that are a part of the process. We have been in the process since late July and it is nerve racking and exhausting. One time MJ had 3 different evaluations by 3 different specialists in one week. We are at the point in this process where we have had our first parent meeting with the school district and various school specialists, and MJ has been through all of the evaluations by each school specialist including psychologist, occupational therapy, and speech therapy. BIG Meeting #1 – Tuesday (9/18) at 11:00am is the “BIG” meeting where we get together with the school district and all of the school specialists to “discuss” their opinions on MJ’s needs and hear what they recommend in terms of special education.

We have also had a pile of parent evaluations regarding MJ’s behaviors and abilities that we have filled out for the Dr. the past couple of months. Along with that MJ has had blood work done including genetic testing. Due to lengthy waiting lists (11+ months we were on the list) MJ had seen the Nurse Practitioner to get our foot in the door in July. BIG Meeting #2 - We have an appointment Tuesday (9/18) at 3:30pm with the actual Dr. at Phoenix Children’s hospital for more evaluations and observations – and to go over MJ’s diagnosis in detail.  

To an outsider meetings like this probably sound encouraging – like there should be some sort of relief knowing that your child is on the cusp of beginning to get the services he needs. Believe me that is the way I want to feel right now – but in all honesty I don’t. I am a nervous wreck. When it comes to HFA (High Functioning Autism) specifically, each child can be affected so differently and there are days that can be drastically better, and drastically worse than others.  These specialists spend such a minute window of time with your child that it is hard to feel confident that they can get an accurate grasp of his difficulties and his needs. The particular days MJ had his evaluations ended up being “good” days. Normally we would celebrate such days – but when an evaluator looks at you and says that he is doing such a “great” job and this must be a “good” day it puts a lump in your throat. You want your child to have good days, but you want them to get the help they need because 70%-80% of the days are not good. No amount of test or survey, or evaluation, or observation can fully grasp my child’s issues in my opinion. I know it is not possible – but a week in our shoes is what I wish they could do. A week where they can see the obsessiveness, the anxiety, the repetition, the melt downs, the craziness that we live on a daily basis just trying to maintain some form of normalcy in our household. What if they miss something? What if they think we are embellishing? What if the school doesn’t want to help him because he is “high functioning”? All of those thoughts go through your mind.

MJ has had a very bad week – it is wearing on all of us and Dan and I try daily to figure out how to help him. I had a mini-breakdown earlier today because of this. I am weary because we don’t know what to do on a daily basis to help him and it seems the older MJ gets the harder his issues are to handle. I am sad for my son that he has to go through what he does. Can you imagine what goes through that little mind when he literally cannot function without repetition and routine? What do I mean? He had a meltdown last night because in the hustle of our bedtime routine he didn’t “fix his friends” as we call it – he has stuffed animals with him on the bed and he has to straighten them and put them in their exact place before he can lay down – even if they are already in their place – he HAS to touch them – each one. And if he misses one – he has to start over. His mind cannot function – cannot relax if he does not do that every single night. Can you imagine your mind doing that to you? I am sad that we can’t help him yet. I am scared that Dan and I won’t get the help we need to help MJ. These meetings terrify me – how are we supposed to hike that 10 mile mountain with if we don’t get the hiking gear?!!

I was a mess this afternoon with all of that going through my mind and my heart. Then my sweet husband looks at me – the amazing spiritual leader of our home just looks at me with great conviction – “God has this. We have to trust Him.” It’s amazing how easy it is to let yourself turn into a mess – and how wonderfully comforting it can be to hear those words and know their truth. (Repeating to myself) God’s got this. God has this. MJ is in the palm of God’s hand. He will guide us. He will lead us. Thank you Lord. Thank you.

 Joshua 1:9 (NKJV)
⁹ Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.”

 

Daddy's Prayer

There was a time we did not know if we could have kids (story here). ((Sigh)) God’s ways are so mysterious… 

Psalm 127:3-5

 ³ Children are a heritage from the LORD,
   offspring a reward from him.
⁴ Like arrows in the hands of a warrior
   are children born in one’s youth.
⁵ Blessed is the man
   whose quiver is full of them.
They will not be put to shame

 

We thank the Lord we were blessed with children. We named our first child for the meaning - “gift of God” in Hebrew. It definitely puzzles or confuses me that we could come to the place we are at now that he is 4 ½ years old. The child we consider God’s gift is also one with autism. Allowing myself to go through the emotions my instinct is to be angry and wonder how God can give such an amazing gift as our child but give him this curse? Why Lord?

As a father I am having such difficulty following where God is leading us on this road. I guess I could say I am having trouble trusting God in all of this. Just like the man in Mark 9:24 who said “I do believe; help me overcome my unbelief!” I am similar with my trust in God. I just need to remember

Proverbs 14:26

 

 ²⁶ Whoever fears the LORD has a secure fortress,
   and for their children it will be a refuge.

Philippians 4:6-7

⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Sometimes I get upset and sometimes I don’t feel it – but in my heart I know why. M.J. is a very special person God has placed in our lives to teach us more about Him.

 
Lord give us strength and peace. We know that you alone are God and you will not forsake us. We ask that you help us to be strong for our children, be brave through the trials, and help us find Your light shining through these little lives. Praying that not only will M.J.’s life teach our family, but teach many others about Your love Lord.

What now?

I know when someone gives me news about their life that isn’t the best news, sometimes it is hard to know how to react. You want to encourage, you want to know if they need anything – but then you think should I give them space? Am I meddling if I ask how everything is going? Will I get them upset if I ask questions or should I just not make them talk about it? Those are difficult things to know and many times you can come to the conclusion it may be best to just leave things alone rather than take the risk of doing something wrong or upsetting them.

Can I tell you something from the other side? From our personal perspective – We would rather be overwhelmed with good intentioned people wanting to love on us – then feel alone when no one reaches out for fear of not knowing what to do to help. Does that make sense?

Relationships can be difficult – and supporting a person through a struggle in their life that you have no experience or knowledge about can be discomforting. I totally get that.

So I wanted to list some things that would be helpful to our family and MJ as we travel this new journey with his diagnosis of HFA (HighFunctioning Autism).

All we ask is a few things from you...

1.       Please give us permission and time to grieve through this. We know you all want to be encouraging. We know there is a lot of help and programs and “God can do anything”. But we deal with and see daily struggles in our son that no one knows and sometimes more than anything we just need permission to be emotional and sad about our son and our family having to struggle through this.

2.       Please forgive us if our emotions sometimes get in the way of our communication. We want to be careful how we speak – how we write – and how we deal with our relationships. But there may be times where our emotions get the best of us and our communication may not come out as good as we wanted it to.

3.       Please ask questions. We want to share with you. We want to help people understand and we want to let you into our lives and know our story. We are more than willing to answer questions about MJ himself or how our family is dealing with things.

4.       I know this goes without saying – but if you are in a position in his life where you have a relationship with MJ, please don’t feel the need to treat him differently. If you are in a position of leadership or teaching in his life we will be communicating and working directly with you on his special needs as we continue to discover them.  

5.       Please read our blog and feel free to share it with others. Writing and sharing our story through the blog helps give MJ’s situation purpose. Reading the blog and sharing with others will help us touch other’s lives and hopefully inform, encourage, and inspire.

6.       Please follow your heart. So many times all of us dismiss the urge to say something or give a hug when we felt led. Please don’t ignore that. Please follow what God places in your heart if you feel led to encourage us (or anyone) in any way.

7.       Please pray for us. Many of you have been praying already when I have asked and you didn’t even know why. From the bottom of our hearts we thank you. We absolutely felt your prayers and would love it if you are willing to continue.

This is a huge step that we feel we are taking opening up our lives and MJ’s life and sharing so much with everyone. It is a step in vulnerability that is uncomfortable, and foreign to us. However we know without a doubt that God has put this in our lives for a reason, and is leading us to be completely open and share this story for His greater purpose.

Psalm 59:17 (NIV)
You are my strength, I sing praise to you; you, God, are my fortress, my God on whom I can rely.

MJ's Story

When you dream of being a parent and that day finally comes you are overflowing with excitement, anticipation, and dreams for the little miracle you created. That perfect little child with ten fingers and ten toes is full of amazing potential to live an incredible life. As a parent you have dreams of watching the milestones, nurturing their growth and helping them experience the joys of this world.

It doesn’t always turn out the way you think it will. Sometimes it is better…sometimes it’s not. We all go through the adjustments of sleepless nights and periodic fevers; the realization that your life is no longer about you – but truly all about them. In the moment those things may seem overwhelming, and maybe not the greatest part of being a parent. Then we all look back and realize how special those moments really are. Those are not the “not so great” moments I am talking about. I am talking about moments that (thank God) not every parent has to go through... moments when you realize the road you thought you were headed has suddenly taken a left turn, and it looks like it is even more of a jagged road ahead.

This is our story. This is our oldest son MJ’s story.

It was a little over a year ago in the summer of 2011 when my mother’s instinct came bubbling to the surface like a volcano that had been churning for months. I will never forget that day. Prayer after prayer for our 3 ½ year old child and we felt lost – we felt helpless. Then the day came that God whispered in my ear “you are right, something is wrong”. There was no doubt in my mind it was God. That is the day I came to the realization that no amount of excuses, explanations, or dismissal from others could change what was going on. As a mother I couldn’t be in denial any longer – I HAD to do something. Something wasn’t right. Our child needed help – we needed help to figure out how to help him.

From that moment I had a fire in me like you wouldn’t believe. But we had no idea where to begin or what it even was – so we prayed – and He answered. God led the way. He led me to a person that understood and had been through what we were going through. It gave us a direction – a place to start. When I researched and read (from reliable sources) it hit me like a brick wall. So many of the things that we never would have linked together suddenly all fit together like a perfect puzzle. The picture in that puzzle was scary. The picture in that puzzle was devastating. The picture in that puzzle… was our son.

It was a little over a year ago we started the journey of finding answers. It was a little over a month ago we started getting (official) answers. Since the day we had an appointment set with a specialist Dan and I asked ourselves how would we handle the results? What would we do? What would be best for MJ? It didn’t take us long to know that God had a bigger plan to use MJ’s story for others. How that looks we don’t know yet but one thing is for sure – God made MJ very special – and we will honor Him for that!

Dan and I both knew immediately we needed to share our story, and continue to openly share our journey from this point on. Trouble is the past month since our appointment I just haven’t been able to get myself to do that. I have struggled with opening up, and struggled with “outing” MJ. I have just prayed and prayed on what to do...how to do it.

My hesitation has been that what MJ has is something that is often misunderstood – to some even controversial. The few people we have shared it with have sometimes been skeptical, confused, and even turned away. All I can tell you is that we have probably at some point been in all of their shoes so we don’t blame them. Now we are on the other side and we realize until you have been there – until you have had first-hand experience or a close personal relationship with an individual who suffers from this - it is impossible to understand or to know what a family goes through. We have suffered through struggles in silence this past year and it is time for us to start sharing.

MJ is being diagnosed with High-functioning Autism – “HFA” for short. Most people who don’t know anyone with Autism think of individuals who have severe symptoms when they hear that diagnosis. My explanation to you in one sentence is this: Autism has several different levels of severity, with several different symptoms, and it can affect every child differently.  It is a very mysterious, confusing, frustrating, and heart breaking disorder.

Those of you who have met MJ may be even more confused by this diagnosis. Trust me - we have been in your shoes – we know – and we don’t expect you to understand, we don’t blame you if you don’t know what to do either. I feel part of our mission as a family is to use MJ’s story to help people understand – to educate. God put this in our lives for a reason and we will honor that – we will honor Him. So we will share MJ’s story – we will share our journey. You will walk with us step by step – and we will learn and grow together.

Please look at our next post about what you can do for MJ, our family, and other’s affected by Autism.

Blessings in raindrops

I’ve struggled the past few days on whether to write and share with all of you something our family has been going through this week. We received some potentially bad news last Friday, and we are in the process of waiting for answers. My first instinct over the weekend after the news was to pull away, close myself off, and to retreat into a puddle of sorrow. Then Dan reminded me that it was Satan working. He encouraged me that in the midst of trials is when you need to surround yourself with people that can love and support you. So why is it so easy and natural to want to just run away and hide? I know... I can feel it, and I have to fight it. I know that if I run away and hide and isolate myself that the enemy will use all of the negative feelings about my situation to instill a fear, bitterness, and resentment in me. I can’t let that happen.

Isaiah 41:10 (NIV)
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

As hard as it may be, and as much as I want to close myself off, I need to share this with you. I need to find the strength and courage to be real, and to be authentic – just as I promised to you that this is what our blog would be. Totally and completely authentic and transparent.  

I received a call on Friday from my doctor with some test results. I was expecting the call, but not the results she gave me. I just remember getting off of the phone and thinking this can’t be. I think it honestly took a few hours to sink in, it was so surreal. You see I have had my share of health problems, but thankfully nothing ever too serious. I have a couple of minor conditions that I have learned to manage, and they are very manageable.  I went in last week for what I thought was a minor medication adjustment. I was having what felt like some very typical side effects and wanted to talk to the doctor about adjusting my meds. So she ordered some routine blood work, and she gave me a prescription for a different med in anticipation of the blood test results showing nothing.

 Then I got that call on Friday. Twenty four hours after I had done the blood test my doctor was calling to tell me that my white blood cell count was up and she was concerned. I knew why as soon as she said it. You see, normally a white blood count could be something as simple as a basic infection in your body; it is the way your body fights things off. What made my situation unique and alarming was this was the third time in four months my blood test has shown an elevated white blood count. Back in January I went for my routine annual physical exam and my results came back then with the higher white count. I was having some minor sinus issues at the time, so we both went with the idea that it could be a sinus infection. I got a round of antibiotics, went back to get re-tested in 2 weeks….and my white count had gone down slightly, but was still elevated. At the time we left it at the thought that there was just something working through my system and I agreed to call her if I had any other symptoms.

I had been dealing with a lot of physical oddities the past few months, but our lives have also been going through a lot of major changes as well. I attributed many of the things I was feeling and going through as stress related, and plain and simple being out of shape and not taking care of myself right (I know I need to get better at that). It wasn’t until the last 3 weeks that things really started intensifying and adding up for me that made me realize I needed to talk to the doctor (Dan’s concern was also encouraging me to g get checked), but even still I totally thought it would just be a routine medication adjustment.  Not so much.

It turns out that with the symptoms I am having, and my blood test results – It is pointing to a diagnosis of an immune disorder. I won’t get into the names of them until we know for sure. What I will tell you though is that there are 2 specific conditions that I am showing signs of. Each one of them your body creates antibodies against the good cells in your body. Essentially your body is attacking itself, trying to kill off the good cells thinking they are diseased. Both conditions can affect your body differently, and different parts/systems of your body. Both disorders cause fatigue and pain, among other things. There is no cure for either disorder.

I have a family history of one of the disorders. In a way I knew that there was a good chance this day could come. I never thought I could be this young when it hit me. Over the last few days I remember looking at Dan one evening in tears and just asking him – Why does there always have to be something in our lives to test our faith? Like we haven’t shown our trust, and our faith, and submission to God the last few years with everything that has gone on in our lives? Why does it always have to be something? Yes, I was angry. Yes, I was thinking “Why God?!”

But I knew the answer. And at the end of the day after the angry emotions subside and you realize that you know the only way you do get through these things is to reach out to Him. He is the answer.

Psalm 46:1 (NIV)
God is our refuge and strength, an ever-present help in trouble.

Our family has gone through some hard times the last few years {our story here}. No matter what we have gone through Dan and I know without a doubt we will always seek Him, we will always praise Him, and we will always honor Him. You know what? God has brought us through those trials beautifully and even given us blessings through them.

So as I sit here waiting for my newest test results that I took yesterday thinking about the possibilities – I know that in some way, as scary as it may seem now, that God is going to turn those trials into honor and glory for Him. It is our job to seek Him, and follow Him, so that through these things we can bless others in His name.

My mother gave me a card at a very difficult time in my life in my early twenties. I remember like it was yesterday, and I still have it stashed away. It said “Remember – After the rain, there is a rainbow”. So here I sit waiting, and I trust that there will not only be a rainbow after the rain, but there will even be blessings through those raindrops.  

Everything works together

When you are unemployed for a long period of time you learn very quickly (if you didn’t have it figured out before) that EVERYTHING is in God’s hands (the good AND what you would think is “bad”).

When I have looked for employment I have tried to have realistic expectations of the application process. I know there are many candidates to compete with and my resume may never get to the “top” of the pile simply because there were so many candidates/applications. So the times I got an interview I was confident and excited because I felt like the hard part (just getting your resume chosen) was over.

When I started (finally!) getting calls for interviews I had the mindset of “I have never been turned down once I get an interview! No problem! Smooth sailing!”…Yes…before this stint of unemployment, I have never been turned down for a position that I have interviewed for…never! Speaking to people and selling myself must come naturally to me (don’t ask me how because overall I can be quite shy!). I have a good resume and written recommendations from previous (high level) supervisors and coworkers.

Yet, despite my efforts, the past few months I have gotten turned down by 4-5 companies after an interview. The first couple of rejections were extremely hard on me, and probably a bit of an ego check. I just didn’t get it. Of course naturally I had to rationalize their decision to make myself feel better...and usually I came to the conclusion “I am probably over-qualified or they just don’t think they can afford me or that I will stick around.”...Whoa… ego check. In order to deal with the rejection I really started praying and asking God why. Why would He put me through these interviews and the false hope and the embarrassment? Why would He tease me with the hope of getting out of our tough economic situation (like dangling a carrot in front of a horse and pulling it away).

Then my prayers and my heart started changing. Why wouldn’t God put me through these interviews and rejections?

Isaiah 55:8-9 (NKJV)

8 “For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD. 9 “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts


Even if things are happening that I may at first perceive as “bad” or negative, does that mean God isn’t working in my life? Absolutely not! There are many times that God uses things in our life that are not what we would consider the greatest, so that we can grow ourselves, as well as grow closer to Him. So, I began to ask God (like I have in the past, but seem to forget) “What can I learn from this Lord? What can I get out of this Lord?” I realized that even though these rejections after interviews may have at first seemed like a disappointment, I could see where God was helping me brush up on my skills and preparing me for bigger things. Suddenly a weight was lifted off of my shoulders.

Romans 8:28 (NKJV)

28 And we know that all things work together for good to those who love God, to those who are the called according to His purpose.


So here I am after months of rejections and confusion, at my old company American Express as a contractor. I just completed a final interview for an Executive Assistant position as a full time permanent employee. This is the same/similar role I was in when I was laid off exactly 3 years ago.

Funny how in hindsight you can see where if God didn’t allow things to happen in a certain way, you wouldn’t be where you are today. I love being able to look back and see all of the dots of God’s handiwork suddenly connect! It WAS in His hands. It IS in His hands. It has ALWAYS been in His hands. So I needed to hand it all over to Him, and trust in that.

Has the journey to get here been easy? No. Does God have a bigger plan? Yes. It is my job to trust in that, and know that God will always do things for the good of those that love him. It may be tough love, but that is what makes it Agape Love!



God of Wonders

What helps you feel connected to God? Is it music? Spending time with family or friends? Spending time out in nature? What gives you a comfort and peace by reminding you of God’s love? It could be anything. Usually it relates to the way your mind and spirit work; in other words, your personality.

For me, there are two things that I have known for a long time that helps me feel closer to God than anything.  One of those things is music. There is something about the way music conveys emotions beyond what any word or gesture can come close to. The other thing that I know always helps me feel close to God is nature: whether it is the trees, the desert, a beautiful blue sky, or a cloudy day with a rainbow. I love being able to just look around me and see God’s amazing wonders that He created so majestic and so beautiful.   

Today for lunch I went into a break room I have never been in before.  The room’s window is facing another building with a small courtyard in the middle of the two buildings. Since it is a Friday the office was fairly quiet and I was the only one in the room. I was reflecting on my first week and thanking God for helping our family through the transition and holding my hand through these changes. Then I looked up, and to my surprise, as you look out the window just to the northwest is a silhouette of palm trees from the courtyard, a beautiful blue sky with an amazing background of gorgeous Arizona mountains. It immediately reminded me of God’s might, wonder, presence, and love. He was right there, still with me, still listening. I had the most beautiful lunch today to end a great week with my Lord. 

God Time

My commute to work is about 45 minutes each way. It has been 3 days and I am not only beginning to somewhat enjoy my time in the car now; I am beginning to look forward to it. I forgot how nice it can be to be trapped in a car and forced to have nothing to do (besides drive of course)...And I will tell you why I say that. I remember years ago I always looked forward to my car time being my quiet time. Most of the time I would be singing my heart out, usually on the way to the church office (when I helped out years ago) or when I was on my way to choir/worship team practice. It was my quiet time.  It was my God time.

Sound funny? It does a little bit, doesn’t it? God time in the car? Let me ask you, do you take time out of your day every day to just be in the presence of the Lord? I don’t necessarily mean read the bible, study a devotional, or say our mealtime prayers. Those are all wonderful things of course. But what I am talking about is talking to God, praying, worshipping, practicing His presence, and just being still.

Psalm 89:15 (TNIV)
¹⁵ Blessed are those who have learned to acclaim you, who walk in the light of your presence, LORD.

I find the times I am most connected with God, and feel the best presence of Him in my life is when I take that quiet time to connect and be in His presence. Sometimes I lay my troubles on him, sometimes praise Him and worship Him in song (yes I literally sing in the car); sometimes I just thank Him for all of the small blessings that He gave me throughout the day. Whatever it is, I know He is there, and I know He is listening. Sometimes I get an immediate connection, other times I feel the need to reflect on my thoughts and my heart and pray for guidance (so I can “get” the connection).

Today I was disappointed that I hadn’t gotten that “it” thing for the day. You know the totally obvious knock you over the head, that was totally a “God thing” thing? Then I just had to laugh at myself. God isn’t some vending machine. I can’t expect the “wow” factor every day.

But when He needs to, he reveals Himself. As long as I trust in that, and I am open to that, I won’t miss it when it comes….and I didn’t miss it tonight either.

 Psalm 27:14 (NLT)
¹⁴ Wait patiently for the Lord. Be brave and courageous.Yes, wait patiently for the Lord.

He gave me the most beautiful sunset on the way home, and it was as if He was saying to me right there, “you get it”…

Matthew 25:21

²¹ His lord said to him, ‘Well done, good and faithful servant...
…”You get it”.

Transition

Day 2 of the new/temporary job. Last night was wonderful coming home to 2 excited little boys and a wonderful husband. They missed me, and it felt wonderful to be so loved. Even the goodbye this morning was not bad. Pretty much “routine” like yesterday. I was grateful that the “transition” seems to be going so well. It helps me to cope knowing the boys are doing okay. I posted that [verse] on my phone and I was so grateful for feeling God’s presence all day yesterday as well.

Then you get in the car… and you get alone with your thoughts. Could it really be THIS easy? Could it all blow up in a few days when the boys realize that mommy leaving is an everyday thing? Will this role reversal really work? Could this really be the answer? What happens if nothing comes up before this temporary position is over? ((Sigh)) Your mind just wanders and wanders.

Then… it happens again…without my mind even being in the right place God just immediately pulls me in with this (pic below). It is like he literally took my chin, pointed it in that direction and said “look my child at what I can create, and just take it in”.

Psalm 19:1 (NLT)

1 The heavens proclaim the glory of God. The skies display his craftsmanship.

Within a few seconds He draws my attention to the song on the radio. “You make everything Glorious. You make everything Glorious. You make everything Glorious…and I AM YOURS!!”

Here He is again, right on time, right on cue, with exactly what I needed! Yes Lord, you do make everything Glorious! Even my life that sometimes seems messy is glorious through You. I am YOURS!

New Beginning

At risk of sounding cliché…today was the first day of the rest of our lives. Today was the beginning of a new era. The new Hope! ….and I was scared out of my mind.

I started my job today. I am not scared of the job itself, I have done it before and I enjoy it. I was scared of the transition for our family and my boys. Could it really work with me being the working mom while my husband was the stay at home dad? As of right now what is getting me through it is the fact that somehow in the back of my mind I have comforted myself in the thought that “this is only a temporary position”. I told myself - “Maybe I will just work these 3 or 4 months, pay bills, get ahead again, and then get another short break to be home with the boys before something permanent comes along.” Now I know that me having time off after this temporary position is not necessarily the best thing for our family. However, just the thought still brought me a form of comfort knowing this wasn’t the end-all be-all of our situation. Who knew what could happen in 3 or 4 months, God can do anything right?

One blessing today is that I was able to say goodbye to the boys this morning. They are usually early risers anyway and I don’t have to leave until 7:00am. They are used to me leaving for ministry events, or running errands, so the goodbye was routine to them; happy hugs and kisses. A happy departure: Such a blessing!

It wasn’t until I got in the car down the road, and of course heard a song that made me think too much about leaving them that I began the fight of emotions. I had the radio on in the car and the Christian morning show was having a discussion that morning about the job market. They were touching all sides of the subject including job searches, new career paths, new family roles, and the emotions that can be involved. I thought to myself: This is it. This is really happening. Then I got mad and didn’t want to put myself through the emotions so I turned it off of Christian radio to something else…or at least… I tried. I couldn’t even get through one song, I needed any connection to God I could get; I HAD to turn it back to Christian radio. So I did, and I just prayed.

Deuteronomy 31:6 (NLT)

6 So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you.”

Throughout this morning I had already fought back tears a few times already. I prayed for strength. Then something happened. The radio show had an expert giving advice on job searching, but they were also taking calls from listeners. Most listeners were asking advice or giving testimonies, but one particular lady just called to offer something that had been laid on her heart in her personal bible study the night before. She said “I am not having job issues, and I don’t have any questions. I just wanted to call and offer something that God put on my heart for those that are out there going through these hard times (and she shared this verse):

Isaiah 41:13 (NIV)

13 For I am the LORD your God who takes hold of your right hand and says to you, Do not fear;  I will help you.

Remember I turned away from the Christian radio and felt the NEED to turn back just a few moments before this call. There is no doubt in my mind that the Lord used that lady to make sure I heard His message and received His comfort when I needed it. He was right there, holding my hand, just like I had asked. Thank you Lord!

Good, Right...Scary!

Remember our “celebration” a few weeks ago? I gave a very short blog about it [here] with intentional lack of details. I mentioned that we had received some news just a few days before Christmas that helped Dan and I feel relieved and optimistic for the first time in a long time. I didn’t share the specifics of the news in that post for several reasons. One of the main reasons is because I hadn’t TRULY processed the news myself yet. How could I write about something when I wasn’t even sure what I was feeling? There were so many emotions to process I just went numb to it all. It was the only emotion I could handle in order to enjoy the holidays: Numbness (to the news). Have you ever felt that way? Overwhelmed and confused when you received some much anticipated news?

Psalm 94:19 (NLT)

19 When doubts filled my mind, your comfort gave me renewed hope and cheer.

This is the time where God really can reveal himself to you…

I remember Dan being so excited when I got off the phone that day in December and told him the news, yet all I could think of was how scared I was. Is this really what God had for us? Would this even follow through and happen? What about the boys? What about Dan? Can this really work?....

That day I got the call I was requested to take a temporary position (in January) at my old company (to cover a maternity leave). It is a day and a phone call we will never forget. After both of us being home with no (full-time) employment for 3 years - This signifies the beginning of a new era of our lives…a new hope….a NEW beginning. Yes, the position is temporary, but it was the first symbol of God working in this area in our lives that we had felt was truly tangible. It was a paycheck, a shoe in the door, it was HOPE!

Those thoughts were the logical positives I have had to remind myself as I have gone through the emotional process and facing the fear of the unknown. Do you know the old saying “be careful what you ask for”? Yup. That thought crossed my mind. The time has come where logically I know the right and good thing to do for our family is to get a full time job, but emotionally I don’t want to leave my boys and give up the time I have with them. Both sides of the emotions are playing against each other as I have been processing all of it, and all I can do is just ask God to hold my hand through it. There is literally no other way for me to cope, no other way I know how to cope. I know He can and will give me the desire to follow His lead, the wisdom to make good choices, and the strength to get through such a huge change in our lives.

Joshua 1:9 (NLT)

9 This is my command—be strong and courageous! Do not be afraid or discouraged. For the LORD your God is with you wherever you go.”

I received a call this weekend confirming the position is going through and I start on Tuesday 1/10. God has lead us to this path….Dan is going to be a stay at home dad (even if temporarily), and I will be the working mom…..Trust. That is all I have, and all I want to do is Trust in Him. I know no amount of time, or love, or “good” decisions will get us through…get ME through this process of such a HUGE transition.

TRUST. I get it Lord. It’s ALL in your hands. You would not have brought us down this path if it was not in your will and you didn’t plan to carry us through it. I get it, and I TRUST you!

Psalm 138:8 (NLT)

8 The LORD will work out his plans for my life—

for your faithful love, O LORD, endures forever.

Don’t abandon me, for you made me.