Welcome to Redefine Special!

Welcome! Whoever you are, and why ever you’re here, I’m glad that you found this spot.

I began writing years ago, sensing that it was important to chronicle my journey as the mom of a special needs child. That journaling, which began on a PC the size of an ATM machine, continued in spurts for many years.  A few years back I took a giant leap of publishing my experiences, one small blog post at a time. And just recently I published my first book, Bundle of Joy.

This site is titled Redefine Special, because that is where my journey took me.  After the initial highs and lows (and more lows) of having a special child, a great hope, joy and peace eventually broke through.  It broke out over everything in my life. I truly had an awakening to what Special is.  It’s not a burden to bear, a hardship to contend with, or even something to just accept. The definition of special has been changed by our society and put in “air quotes”  – to be used as a euphemism for less than, undesirable, or outcast.  My journey brought me  back to the original, true definition of the word: extraordinary and particularly valued.

My purpose for writing and speaking is to reach any other special mom out there, who thinks she just has to accept her struggle in life, and deal with it.  No sister!  Follow along with me and you will see, you are so exceptionally gifted in this life.  YOU, too, are special!

If you’re not that mom should you read on? Well, apparently YES! The most unexpected part of sharing my story has been the people who are affected by it.  Men, women, moms, dads, college kids.  People from every walk of life have taken a moment to tell me they are so touched, changed, or challenged by the posts.  Because it is a true story of God’s mercy and grace, it is an encouragement to all.

Browse through my blog posts, order my book and/or follow me on Facebook.  You can read the background story of my son’s diagnosis on the page called “Why I’m writing this blog.”  I would definitely suggest going back in time to my first few posts if you’re looking to find your own redefinition of something (start at the bottom of my list of posts).

Advertisements

Is you Special Needs parenting as outdated as my iPhone?

I’m not sure if this happens with your cell phone, but every so often I get notified that the latest “Update” is available.  Basically my iphone wants me to download a newer version of the iOS. It starts out subtle, but then my phone gets relentless in it’s request to be updated, like a 3-year-old who spies a full cookie jar on the kitchen counter. The issue I have with this update message is that my phone is working fine. I’m a little tech-oblivious (maybe more than a little) and so sometimes the thought of changing my iOS scares me a little.  What if it changes the way my favorite apps work, or my emails send, or my photos are organized?

Recently I ran into a brand-new special needs momma, and she reminded me that an iphone is a great illustration of our lives as special needs parents.  We all have a starting “software” that comes with the diagnosis. We have a certain way of processing the information, organizing our thoughts, communicating with others about our child, our lives and our needs.  We find a pattern that works. The new momma I met was so young and sweet. She tried to tell me her little one’s diagnosis, but she couldn’t quite remember the chromosomes that were affected, or if it was a deletion or an extra piece?   She reminded me of myself 18 years ago, with so many questions and hopes, and although she was being as casual as possible, she was desperately seeking someone to say “Oh yes, I know all about that, and here’s how it turns out in the end.”

I used my initial special needs “iOS” for a lot of years. The initial responses of fear, anxiety, defensiveness, disappointment and anger were my default.  When my pastor’s sermons suggested I “update” my thinking I was sure that didn’t apply to me. It took awhile for me to finally give way to a thought pattern “update” and I’ll tell you, just like the iphone update, it fixed a lot of the “bugs” in my heart and mind.

The Bible calls this the renewal of our minds.  And it tells us it is a daily practice. Just like my iphone, one update is not going to get me through this life.  As soon as I get comfortable with the new font they sent me with the last update, my phone is going to require another update that is probably going to change something else.  

My iphone research showed two schools of thought on the “update or don’t update” question.  There’s one school of thought that tells me not to bother. If it ain’t broke, don’t fix it.  That goes really well with my personality and keeps me in my comfort zone. This is how I parent my son – it works, leave it alone.  This is how I relate to my spouse – it works, leave it alone. This is how I pray and trust God – it works well enough.

The second school of thought says run every update the company sends you.  This philosophy is based on hidden fixes that you aren’t aware that you need. Most often these fixes address security issues. This is what I propose to you as the most successful way to function as a special needs parent.  We can get comfortable with doing life a certain way. Even though throughout the Bible we are encouraged to keep growing, keep running, and constantly be improving, we don’t always apply that to our parenting or our attitude towards the special needs journey.

The new mom I encountered had a newbie “iOS” and that’s ok for her.  For now. But if you’ve been doing this for a while you should be at a different level.  And should continue to grow, gain strength and hit strides as you go along. We do that by daily renewing our mind.  Being open to hear a new thing, accept a new way and take on a new challenge.

Where I am today is definitely not where I was yesterday, but neither should it be where I am tomorrow.  Neither spiritually nor naturally. I have to be open to the leading of the Holy Spirit when it comes to everything from how and what I pray for, to how and what I do to help my son.  Let us not grow weary in well-doing and thus grow complacent or stagnant in our walks with Christ and our walks with our children.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 2 Corinthians 4:16 ESV

And to be renewed in the spirit of your minds. Ephesians 4:23 ESV

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Romans 12:2 NIV

Prison Break

And we know that all things work together for good to them that love God, to them that are called according to His purpose. – Romans 8:28

CASH

Cash posing for a recent photo shoot in the prison yard

I sat outside of a Federal Prison yard and fought back deep, heavy tears of gratitude. A feeling that I was about to be overwhelmed by a sobbing that comes from a place of awe at God divinely knitting together such an unbelievably beautiful tapestry.

Here we sat, my Nicolas and I, waiting to meet his Service Dog candidates. “what’s that?” He asked, pointing at a triple row of curled barbed wire high atop the fence. More tears to fight off.

Nick has recently encountered some new issues that we haven’t been able to figure out. Meds have failed. Both neurologist and psychologist have provided possible diagnoses, but not solutions. Then one night in desperation we decided to see if our sweet old dog placed in Nick’s bed would help. And it did. From the first night.

The next morning I began my search for a service dog! I found a few all over the country, each with a price tag over $10,000. Sadly even though I felt like a service dog was the answer we’d been looking for, it would require a miracle. I prayed for God to make a way.

Fast forward to today. Here we sit waiting to meet “Cash”. He was at the humane society six weeks ago, on a list to be euthanized when a dog rescue organization picked him out and brought here. To prison.

“Cash” is being trained to be a service dog. By inmates. They are guided by Magic City K9, which simultaneously offers grace, second chances and valuable training to inmates AND dogs.

The words that kept playing in my mind as we drove home from our meet and greet were “he works all things together for good.” Usually for me that scripture is accompanied by a list of all of the challenges, struggles and roadblocks I’ve encountered. I see them being woven together in a mysterious tapestry which will ultimately reveal beauty. But today the “all things” is different – it’s things out of my realm, things I’m completely unaware of and that have nothing to do with me or my world. All these things: the reason a young dog was left on the street and slated for elimination, the reason a man ended up in this particular prison, enrolled in a program where he is matched-up with a k-9 trainee. The reason that man would choose to devote hard work and faithfulness to training his ward for several months, to ultimately send the trainee away to live with an individual he doesn’t know or have any connection to. These things blow me away. I am astounded at what God can use to answer a prayer. I’m always astounded and humbled when he chooses to use me. But honestly I’m even more humbled to consider that the circle of things he can use for my good extends so far beyond my comprehension.

Nicolas decided we should pray for “Cash”. And I’ve added to our prayer list his trainer. I pray that God will honor our words and prayers for the unknown inmate: to bless him, keep him, be revealed to him, and save him. To somehow work together so many things for his good, that he will experience and know that God’s Hand is on him and working through him. If even now while in prison, how much more does God have in store for him? I pray that he will, like us, be forever changed by this experience.

Do you smell like smoke?

“They saw that the fire had not harmed their bodies, nor was a hair of their heads singed; their robes were not scorched, and there was no smell of fire on them.” Daniel‬ ‭3:27b ‭NIV‬‬

Until moving to Illinois a few years ago, I had only known fire in tiki-torches, or fireplaces.  I was in my forty’s the first time I sat around an open fire and warmed myself.  My husband and I both loved doing so, and bought our own tiny fire pit. Whenever we got the chance we would sit outside and watch the fire jump and crack. This may sound ridiculous to Northerners, but I had no idea that sitting near a fire deposited a really strong smell on a person. Like, everything you were wearing has to be washed immediately, especially your hair and body! The first few times I sat by the fire I wore my nice wool coat, and subsequently walked around for weeks smelling like roasted wood. Fire has a very distinct odor!

The story of Shadrach, Meshach, and Abednego has always been one of my favorites in the old testament because Continue reading

How I Fight My Battles

Have you heard this song yet??  Michael W. Smith’s war chant turned worship song is sweeping through Christian radio and church services everywhere! If you haven’t yet heard it, click here: Surrounded.

During a recent church service while singing this song, I was reminded that my special-mom journey has been heavily dependent on Worship as Warfare.  There have been, and still are, battles along the road that can’t be figured out in the natural.  Not by me and my husband as Nick’s parents, nor by the plethora of specialists we desperately consult to help provide answers.  They don’t know.  We don’t know.  But Continue reading

The Priceless Uniform

 

Once you become a special needs mom,  nothing is ever the same.  No matter the unique challenges your child faces, the mere fact that he or she must endure and persevere through difficulties that typical kids will never know, creates a very different kind of momma.  I must admit, I have come to love the sisterhood this provides with other special needs moms all over the world. I have facebook friends in lots of countries, and feel a deep and sincere friendship with women all over the US whom I’ve never met.  We are a tribe all our own. We “get” each other.

Never was I more in love with special needs moms whom I did not know, than on a recent trip to Haiti. Continue reading

Better to Give than to Receive

“In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.'” Acts 20:35

“Give and it will be given unto you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” Luke 6:38

jeans-2979818_1920

Nicolas brought home a “Good Deed Tracker” from school and I knew it wasn’t his cup of tea.  Although Nick is an exceptionally kind-hearted and generous person, I knew he would not be willing to perform any of the deeds specified on the list – they all had to do with giving.  Among the deeds were: donate clothing that you no longer wear to charity, Donate unwanted toys to others, color/draw a picture to give someone else, etc.

If we’re going to visit someone, Nick will beg me to stop and buy them flowers, or gifts, and always loves to help others.  But he cannot abide when anything that is ours, is taken out of our home or given to someone else.  A few years ago his OT, Jessie, worked with him at home each week.  I always offered her a bottle of water, which she usually drank or took with her.  Every week, without fail, Nick would ask for the water back.  It was ours, not hers.  He needed our water back where it belonged. He loved Jessie dearly, but our water is our water.

I had recently done a closet-clean-out in his bedroom, and had the pile of clothes laying in the hallway.  He had been suspicious of the clothes not being in his closet, but I had given him non-answers when he asked why they were there. (one of my favorite mom tricks). But I decided that the “Good Deed Tracker” would be my strategy.  Because he also loves to please his teachers and would want to accomplish the goals they sent home.  I showed him how those clothes don’t fit anymore, we filled two garbage bags and we put them in the car.  I explained at length about charity, and how other boys could wear the clothes. He was on board until we arrived in the Goodwill parking lot and I handed him one of the bags to carry.  Insisting “no, no, no MY clothes” all the way to the door, we placed the bags in the receptacle and I read him all the posters around the Goodwill lobby.  For example, one poster read “thank you for giving me a job” with a picture of a smiling young man with Down syndrome.  I saw Nick pondering the process.  At that moment, the supervisor came out from the back.  She somehow knew precisely what was happening and jumped right in.  “I wanted to meet you personally!” she said to Nick.  “Thank you for doing such a good job of sharing your things.” She asked his name, gave him a high-five, and told him he was doing something very important and helpful.

Well, long story short, we now have a Donation Expert in our home.  He is so very proud of himself, he told the therapist we saw yesterday, told dad all about it at dinner and is ready to go back to Goodwill tomorrow with more things.

My point is not to brag on my charitable son, or even about overcoming the issue of his need to keep his stuff.  It is about the inner desire that every person has to do something nice for others.  It is about the pride we all take when we help someone, and the good feeling that comes along with it.  Sometimes we forget that our special kids have the same inner workings that we do, because they don’t express it, and quite frankly they have much more pressing and important needs that we feel we should prioritize.  Our kids and ourselves are often more on the receiving end of someone’s charity and kindness.  But the Bible says it is better to give, than to receive.  It doesn’t qualify that, doesn’t say it’s only for people who can give, or understand giving, or want to give.  It’s simply a principle that applies to all.

Nick has received many wonderful blessings, VIP treatment, and generosity from others. He is truly blessed.  But I have been a bit neglectful of providing him the opportunity for something better than receiving all those blessings: the opportunity to GIVE.

What I’m NOT Writing About

fullsizeoutput_1f2

Sometimes I’d like to tell you a lot more stuff. Today I daydreamed about sharing some nitty-gritty details from the trenches. I’m sure you’ve come across those groups, pages and sites where other special needs moms tell their horror stories. The challenges, difficulties,and strains of parenting their child and the wear and tear of it all. Sometimes I think about posting on those outlets for the WIN. I’ve got some doozies!  Whenever I walk through a really rough day, and face issues that are not what “normal” people face, there is a part of me (hint: the Bible calls it my “flesh”) that really wants to write one of those pity party posts. It would feed my pride, my competitive nature and my sense of community a lot to share our most recent Bad Day. Continue reading

The Devil is a Liar!

“The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.” John 10:10 NIV

I’ve been a mom for over 20 years. It may seem like forever to my friends with babies and toddlers, and to others of you I may still be a rookie. But I can tell you it’s long enough to have forgotten a lot about motherhood! This past Christmas, my guys gave me the sweetest gift I’ve ever received – they had all our VHS home movies translated to digital files. I am slightly obsessed with watching them, can’t even lie about it. I am particularly fascinated by young me and my two babies, and how none of us are what I remember at all. One of my favorites is a moment I have no recollection of. There was a birthday cake made of Rice Krispies with a lit candle in the middle. I was trying to video the boys singing happy birthday so I could send it to their grandma. But while creating this lovely movie, my 2.5 year old grabs the candle with his fist. He begins to cry, I inexplicably keep on filming, and then when I tell his 5 year older brother that he must continue the birthday song without the candle, he storms off in anger. I promise you, if I wasn’t watching the video I would swear in court that those events never occurred. I can’t get over the discrepancies in my mind’s eye and the actual video footage of that period of time. But the videos don’t lie. My memory replays it all with rose-colored glasses, but the videos show how raw and imperfect much of it actually was.

One thing I do remember, and is confirmed and evidenced in my young, wrinkle-less face on video, is how completely hopeless I often felt when my youngest was a baby and toddler. After receiving the diagnosis of a rare genetic disorder when he was just six months old, I spent all of his early years a worried, nervous wreck. I took him to every therapy and intervention program I could find and was constantly trying to push him to develop and progress. There are lots of videos of me trying to teach him words, years before he could speak. I have video of his very first steps, at age 2, which was earlier than doctors expected, but 14 months later than his brother.

The more I have watched all of the precious videos, I’ve realized something that makes me so mad. The devil is a liar! You see, while I was worrying through all of Nick’s developmental years, I missed out on the miraculous that was right in front of my eyes. I watch now, young me repeating words to 4-year-old Nick and he’s babbling back at me, and it is beautiful. It’s indescribable how perfect he was. He was different, and that’s all I saw back then. I was painfully aware of what he was not doing. But 20 years later, I wish that young Melanie had just lingered a bit more on what he was doing, the perfection within his differences.

My focus was on the lack, because the devil is a liar! He lies to all of us. He lied to me. He told me to worry. Every time I encountered a typically-developing child around Nick’s same age, the devil ramped up the lies in my head. He told me “less than” while the truth was “perfectly made”. The devil told me to focus on the fact that he couldn’t speak, but I should have been focused on his sweet facial expressions, his eyes and smile that could light up a room. The Bible tells us that the enemy seeks to steal, kill and destroy. And I’m gonna tell you, he stole a lot of sweet moments from me by whispering lies in my mind.

Let my story encourage you, young momma, to stop believing the lies! Take it from me, whatever the devil has you focused on, is not the truth. Whatever whispers you hear at night that keep you up, and spill tears on your pillow, are not from your heavenly Father. There is a truth that is right in front of you, of prosperity and blessings, that the enemy does not want you to see. I know you could give me a lot of “but”s right here: but his diagnosis, but her heart, but the seizures, but my husband. Listen, there is a truth, above all those “but”s, and that is what I want you to look for today. The facts are the facts, but the promise of God to give good and perfect gifts is what supercedes them all. Take a moment, to view your whole situation from the future, look back at yourself and find what is beautiful now, and focus on that. Give thanks for that, and watch how the lies become silent as you praise God for His blessings.

(https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fredefinespecial%2Fvideos%2F1149924425144190%2F&show_text=0&width=560” target=”_blank” rel=”noopener”>click here to see a one minute video of four-year-old Nick, before he could speak, communicating so beautifully and perfectly. This will open a window to my facebook page)

here is photographic proof: the happiest, most joy-filled gift imaginable.

I just need one thing

pic with re-set & bible

“Martha, Martha,” the Lord answered, “you are worried and upset about many things, but few things are needed-or indeed only one. Mary has chosen what is better, and it will not be taken away from her.” NIV Luke 10:41-42

“Martha, Martha,” thou art careful and troubled about many things; But one thing is needful; and Mary hath chosen that good part, which shall not be taken away from her.” KJV

Goodness knows you could slip my name, “Melanie, Melanie…” into that sentence on a regular basis.  As a special needs momma, I often justify and rationalize my being troubled as part of the job description. My son is almost 18, and there are lots of things I used to be troubled about, that I now take in stride.  I’ve learned to give a lot to God, and trust His divine workings in my life and my son’s.  But there are new concerns on every horizon.  A new year brings new worries. New phases and stages always mean new troubles.

But this new year I am reminded of the loving re-direction that Jesus provided to Martha.  He answered all her “many things” with one simple solution. One thing is needful, “indeed only one” is the way the NIV puts it.  Hold on a second, Jesus, I’ve got a multi-page, single-spaced list of all the things that are needful. But if I review that list, and the root of each of those worries, I would have to admit that setting it aside and sitting at the feet of Jesus, would address every single one.

In his presence I renew my peace of mind, my strength of spirit, and my clarity of thought.  All of the challenges I currently face will be greatly aided by those benefits.  Whether they are negative thoughts, or actual to-do items that have me struggling, His presence re-sets me to a place where I am more equipped and more confident in moving forward.  I can testify that starting a morning sitting at his feet, directs my physical steps on a much more effective pathway throughout the day.  If you can, take a moment to read the whole story of Martha’s situation beginning in Luke 10:38.

A prayer for today: Thank you Lord, that you promise me new mercies every morning. Please help me to take the time to collect them and apply them to my life.  Your presence is the extra boost I need, to stop being busy and streamline my day. I know that if I walk out the steps you have ordered for me, I will walk in grace and empowerment.  Lord remind me that your presence is where I should go to receive your direction and your strength. 

What do you think?  Today’s post is a much shorter format than my normal style?  For 2018 I have decided to go with shorter, quicker reads for you.  Let me know what you think! If you’re wondering about the book in the photo, our entire church is currently reading Reset by Bob Sorge, who is one of my favorite authors and speakers. 

Finding Strength as a Special Needs Mom

weights-646496_1920I pray that out of his glorious riches he may strengthen you with power through his Spirit

in your inner being.

—‬Ephesians‬ 3‬:16‬ (NIV)‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

 

Probably the one thing that I have lacked most often during my life as a special mom is strength. You wouldn’t know it, because I have a strong demeanor. I typically appear unshaken by what the world throws at me and unmoved by disappointment or setbacks.

I’m not a basket case or a bundle of nerves. But there have been so many days since my baby’s diagnosis when I have felt very weak. Seventeen years later, I can tell you that just this week after a failed dental visit, my “inner being” became a deflated balloon.

In Ephesians 3, Paul is not referring to physical strength. He is encouraging his friends to have the strength to remain in Christ. This is the strength and power to comprehend and then faithfully remember the depth of Christ’s love for us. That is the supernatural power that is required when we are weak on the inside. The apostle writes of something that often goes unmentioned and unacknowledged. There is a great depth of weakness that can occur on the inside, while the outside keeps up appearances. There are times when it feels like keeping our faith intact is too hard. Carrying on as if there is a good God who is looking down on me lovingly, watching over me, and blessing me…sometimes I feel as though I may not have the fortitude it takes to keep that up. That’s OK. It’s the reason for Paul’s prayer for the Ephesians. Thank God we have this letter so that we know we are not alone; our generation is not the first to deal with such weakness. Ephesians 3:16 is what we have as a help so that we can buck up and regain the strength we need. This promise is what I can read every single morning and know that if I simply close my eyes and ask for strength and power, the Lord will renew and refresh me. I have found supernatural strength in the midst of the darkest moments, not on my own, but by recalling this one promise.

Feelings of weakness and defeat are things that will definitely come calling over and over. Issues with my 6 foot tall sweet teenage son are no less likely to surprise or challenge my resolve than they were at the start.  However, those feelings of weakness and defeat are easier to overcome, each time, the sooner I remember that I have a promise of strength and power for my inner being.  God’s glorious riches are more than enough fuel for my spirit, and they are available to me at all times.

 

Are your emotions convincing you of a different story? Read Ephesians 3:16–19

aloud to yourself. Tell your emotions they don’t get the final say; rather, God’s

Spirit in your inner being will be in charge of your mind and heart today. That is the

place where, when all else is weak, you have glorious riches of strength. Tap into that

strength and find the power you require.

 

Originally written for Key Ministry.  Click here to read the post on their website.

The Question we all ask

thinking-2725279_1920And his disciples asked him, saying, “Master, who did sin, this man, or his parents, that he was born blind?”  Jesus answered “Neither hath this man sinned, nor his parents; but that the works of God should be made manifest in him.”
John 9:2-3, KJV

In just a few weeks I will be traveling to Haiti, for the purpose of ministering to the parents of children with special needs. There is no blog post for them to subscribe to, no website or Facebook group to join for their child’s specific condition or disability. It is a world I, as yet, cannot even fathom for a family like mine.

Their greatest challenges for raising a child with disabilities in a third-world environment are not the physical ones. I mean — the physical hurdles are gigantic: no running water or electricity, sleeping on a mud floor, walking as the only means of transportation. Just take a minute and consider the accommodations your child requires and figure out how you would do it in those conditions. But I imagine the mental, emotional and spiritual hurdles are even greater. The culture in Haiti commonly holds that birth defects are curses, and babies born cursed are more often than not abandoned. So the stigma and scarlet letter that those families carry around with them, combined with virtually no support or assistance available in the community, must exact a great toll on their hearts and minds.
As I studied and prepared my heart for the trip, God brought to my attention the story in John of the man, born with a disability – blindness. The disciples were curious as to whose fault it was that he was born disabled. I became aware, through my studies, that this belief of a birth defect being a “curse” has been around since Bible times, and even the Jews had a variety of beliefs about those being born ill or disabled, and all of them were negative and held a stigma that went far beyond the disability itself.


Jesus cut through all their misinformation and false beliefs in an instant. And His words can cut through any doubts or questions we may still have today. “WHY?” Is not an ancient question, nor one asked only by the uneducated minds of a third-world country. We ask, in our hearts, all the time. We encounter family members, church members, and people at large who ask the same question. Maybe not out loud, or by making bold accusations, but the question is asked in hearts, all the time.


“…but that the works of God should be made manifest in him.” Jesus completely avoids the conversation about cause. He goes straight to the purpose behind it. One might read the story and say, “Sure. So that he could be standing there and be healed by Jesus, so miracles could be seen.” But then what about my son? As of this day, my child has not been healed. So then, where are the works of God? I did a search on that term “works of God” and found every instance in the Bible where it was used. Do you know it was never used of miracles or physical healing? In the Old Testament it was used to label creation. And in the New Testament — every single time — it referred to salvation.


Jesus answered, “The work of God is this: to believe in the one he has sent.” John 6:29 (NIV)

You see, the more I studied this story, this man, his parents and neighbors, and the response of Jesus, it became abundantly clear. The reason that disability, physical defects, special needs are allowed to be present, is for the salvation of mankind. For God’s perfect love and perfect plan of sending Jesus to redeem us, to be seen in the world. The man’s blindness wasn’t allowed simply for the show of a healing miracle. It was for the purpose of a lasting transformation in his life and many many others. All the neighbors, family members and religious leaders who would see him would not be entertained, but rather they would be SAVED.

 

What if, instead of looking for healing, we were looking for salvation? What if we viewed our call as parents and our child’s call as one to spread the “works of God”? If I view my son’s life in that aspect, I believe he has already fulfilled that purpose many times over. I see the difference he has made in the lives around him. I see hearts softened and turned towards Christ. This is the message I will take to Haiti with me, the message of salvation. And It is also the message I will turn my focus to here at home. By shifting my perspective to the eternal purpose that we are each called to, I can now see my son as much more typical than I did before. I can see that he is perhaps much more successful than most kids his age, in accomplishing his call. I don’t need to know what happened to cause the genetic disorder, but I am certain of why God allowed it, and that empowers me to take up the call more emboldened than ever before.
I believe in healing. I believe it is possible today, just as when Jesus walked the earth. I believe that God can heal my son today, in the blink of an eye.  I want to be careful to point out I’m not suggesting for a moment that any of us stop expecting miracles.  But make no mistake that the greatest miracle of all is salvation.  And all that God allows, or heals, is for that purpose.


A prayer for today: Lord, I have so many questions and things I don’t understand. Help me, today, to shift my focus on the answers that you ARE providing. There is a clear path you have designed for us, and I need your help walking it out. Give me the confidence to follow where you lead, and the boldness to know that you have a divine plans for your works to be made manifest in my child’s life.

Get yourself some “but” 

But we have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf. He has become a high priest forever…. Hebrews 6:19-20a

The most comforting thought I can conjure, is that God’s plan for my life is to give me hope and a future. Lots of people quote Jeremiah 29:11 because of it’s promise of prosperity or protection. I must say that as a mom whose baby’s future is so uncertain, hope is that one thing I can’t do without. there are days of setbacks and challenges when I can’t imagine one good reason to get out of bed! Hebrew 6:19-20 says “But We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf.” I emphasize the word “but” there because it is actually one of my favorite words in the Bible. (super weird, let me explain)
I love how the authors of the Bible used that little conjunction over and over again: they spell out a dire situation, a negative prognosis, a disaster waiting to happen, and then they write my favorite three letters “but”. Everyone from David, to Queen Esther, to the new testament apostles had their “but” moments. I like to think of having Hope as always having a “but”! Praise the Lord, I can recite for you endless stories of how things looked bad, but God. Let me make clear that this applies to every area of our life. Having a special baby impacts everything. The ripple effect of a diagnosis rocks it all. Some of my “buts” include: 

  • My marriage was almost over, but God redeemed it. 
  • Our financial crisis was about to drown us, but God made a way for us to overcome. 
  • My child was given a life sentence of despair, but God substituted it for a life filled with joy.

Because all things work together for the good of those who love God, our marriage crisis actually made us so much stronger. The financial crisis pushed us to Biblical financial wisdom that changed our future. The genetic disorder that should have stolen my child actually gave me one that was more than wonderful. 
There is always hope in Jesus, because we are guaranteed that every situation has a “but”! There is an anchor for my soul, which makes it firm and secure. Jesus is my high priest forever, which means He is my perpetual “way where there is no way”, He is always the answer to every unknown. He covers me, provides for me, intercedes for me in advance, before I am ever even aware of a need. 

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Lean In: Whatever you are facing today, try writing it down or saying it outloud not with a period at the end of the sentence, rather conclude with these three letters and a few leading, promising, hopeful dots: but…..

Why Me?

EVERY special needs mom has thought this, said this, prayed this at some point.  It’s human nature to wonder why something so unusual, so challenging, so beyond the norm, would befall me.  What did I do to deserve this? Why would God think I could handle this? Why can’t I just have normal stuff happen to me and my family?

Asking “why” doesn’t make me a bad person. It doesn’t mean I don’t want to have a child with special needs.  It just means I wish I could understand what God sees in this situation.  I don’t know your story, but I have good news – I can answer your “why”. Continue reading

SOLES FOR HAITI

I am so excited to share with you about my upcoming trip to Haiti!!! I will be visiting a very special ministry, called Footprints of The Son.  Footprints is a school and outreach for children with special needs.  The Ministry goes far beyond education, and encompasses the health and well-being of the student, plus care for the family members who have chosen the difficult path of raising a child with special needs in an impoverished and challenging environment.  The idea of a mom, grandma, aunt or sibling caring for a disabled child in such a difficult place has changed me forever.  As I ponder my own struggles to raise an exceptional child, in this great country, with the many resources and blessings that we have at our disposal, my heart aches for those who face much more impossible odds than I can imagine.  Please read my posts Special Priviledge and  Why Me  for more about WHY this ministry is so important to me.

So I’ve decided to visit them! To take the same message of joy, peace and hope for special needs parents that I write about here, to these sweet ones in Haiti.  But in addition to the words, I want to take something tangible to the families and parents that will bless their daily life.  The request I received was for Flip Flops! Yes, the same flip flops that we wear a few times and lose at the beach, or leave laying around.  They are the shoe of choice for adults in Haiti, and a good pair is hard to come by.  So I will be taking 150 pair of new, high-quality, durable flip flops to distribute to all the caregivers of the 80+ students at Footprints of the Son!

I NEED YOUR HELP!
 I would like you to send me a pair (or two) of flip flops for my trip!

  • They should be durable and new.
  • Men’s or Women’s adult sizes 7-10.
  • Recommended stores: Old Navy, Gap, Walmart & Target
  •  Drop them in a bubble padded envelope and send them through the US Mail for just a couple of bucks!
  • Mail them BY END OF AUGUST
  • Melanie Gomez, 18331 Pines Blvd, #200, Pembroke Pines, FL 33029

Any questions or other information you need – please post it in the form of a comment at the bottom of this post and I will get right back to you 🙂 Thank your friends!

 

Water into Wine

Raise your hand if the picture of wine is what got your eyes to stop on this post – no, wait, don’t raise your hand! LOL  Has anyone else noticed there are more and more posts about moms and wine.  I think I see more posts with a mom and her wine, than I do with and mom and her kids.  School must be out for the summer!

Well don’t worry, this isn’t a commentary on the new trend of wine moms.  But, because wine is so “in”, it caused me to stop and listen carefully to the lyrics of a brand new song by Hillsong (Water to Wine*).  The lyrics are beautiful, and implore Jesus to “turn this water into wine” from the story of his first miracle in the Gospels (see John 2:1-11).  It’s a really cool miracle but never really struck me on the same level as healing the blind and lame, or raising the dead back to life.  But as I spent some time listening to the song, I turned my thoughts to why Jesus would turn water to wine.  Continue reading

It’s All About ME

Anybody else have one of those friends who, no matter what you start the conversation with, whether a problem, or good news, or a current event  –  it always ends up being about her?  You could call and say “my grandma just died” and within 4 minutes you’d be hearing a story about how hard it was for her when her grandma died.   You run into her at church and when you mention that you want her to come see your new car, she ends up boring you with stories of her own car search.  She can neither celebrate or comfort you, because it’s all about her!  Not much of a friend at all, so I am wary to say to you today: My blog is all about ME!

There is currently a huge backlash in the blogging/social media world against moms who post about their children with special needs. Really mean accusations are flying at moms who chronicle their child’s struggles, or disclose challenges their child faces.  The accusers point out that revealing private information about one’s child, without the child’s explicit permission, is abusive and simply for the purpose of the parent’s own self-promotion.  So again I point out: this post, my blog, all my writing and public speaking are about ME!

Why? Why would I dare be the girl who wants to talk about me? Why would I make myself the center of my discourse? The answer is found in the book of Revelation:

And they overcame and conquered (the one who accuses them) because of the blood of the Lamb and because of the word of their testimony. – Revelation 12:11

the Bible tells us that the sacrifice Jesus made for us, combined with the word of our testimony, is the key to overcoming.  Therefore, I must write about my journey.  I must speak to others about the challenges I face and how the Lord has rescued me from them.  How His grace has supplied all my needs, and calmed all my fears.  I’m not writing for pity, for excuses, or even to entertain.  I want you to know that I put words to paper (well, to screen) so that one other mom might know that there is hope, peace, joy and salvation.

For this reason, you will soon see promotions for my upcoming book! Yep! Congratulations, you’re the first to know.  The book is already through the final stages of editing and shortly will be published and available for purchase or download.  Will you read some details about my son’s diagnosis and struggles? Yes you will.  But be certain the book is not about him.  Being a special needs mom, you see, is not about the special needs child.  It may feel like it, or look like it, but it isn’t.  It is about the mom.  She is the special one I am targeting.  She is the one with whom I desire to share the “word of my testimony” and whose own testimony will, one day, touch others.  So please stay tuned, make sure you “like” my Facebook page, and most of all, be encouraged by my testimony to know that you can overcome.

My impression of a bathroom “selfie” LOL

 

In the Waiting

“Take courage my heart
Stay steadfast my soul
He’s in the waiting

Hold onto your hope
As your triumph unfolds
He’s never failing”

– Bethel Music, “Take Courage”

 

Oh! The waiting! It is the 100% commonality of all the special needs moms.  Because a diagnosis has a prognosis, and a prognosis looms with things to wait for, or dread, or expect, or fear.  Nicolas is 16 and we are still waiting for things. Wondering if they will or will not happen.  Being part of a parents group for his particular rare genetic disorder is often comforting, sometimes reminiscent, and occasionally difficult – because it always reminds me of something we’ve waited for.

I all but forgot about waiting for him to be toilet trained, until recently there was a discussion among dozens of parents of younger ones about it, then I remembered how I waited through ages 5, 6, and 7 before he accomplished that milestone.  I definitely remember waiting for him to speak.  His prognosis was of “absent speech” and his first word at age 4 still brings a tear to my eye. Continue reading

5 Tips for running the Special Needs “Marathon”

“…And let us run with perseverance the race marked out for us, fixing our eyes on Jesus…” Hebrew 12:1b-2a

 

I recently became a runner.  At age 48 I decided, having never run farther than about a half-block, to sign up for a marathon.   It started with an 8-week pre-training training, followed by actual marathon training.  Coincidentally, we celebrated the 16th birthday of my son, who has  a rare genetic disorder, on my first day of “real” training.  I have learned so much about myself, both physically and mentally, through this training process. As I gradaute to longer run I realize that parenting a child with special needs is just like a marathon.  More importantly, I now understand that just as I train  and prepare to run, us special needs parents need to prepare for our marathon.

Here, my top 5 tips for success in the special-mom-marathon:

Get a group. I just happened signed up for the Marathon with a team. Team World Vision sent me the training schedule, added me to several Facebook Groups, organized weekly group runs, and supported me every step of the way.  I made lots of new friends who were in the training with me, and also some new friends who would be running their 7th or 8th Marathon.  I can truthfully say that without that high level of support and accountability there is no way I would have stuck through the bad days.  An epidemic in the special needs parenting community is isolation.  You can survive like that for a little while, but if you’re marathon-ing this thing, you just won’t make it without a solid support group.  Groups encourage each other, offer assistance and support.  A group can be two people, or twenty or two hundred.  You need a group.

Fuel. Did you know that marathon runners carry fuel (food) with them on the race course?  They acknowledge that their body is going to use all of it’s resources along the run and will need to re-fuel before they finish. They also have extremely specific meals they eat or avoid the night prior to a long run.  Nutrition is probably the most underestimated key to marathon parenting.  When typical kids are in that stage where mom has to chauffer them everywhere and keep a close eye, momma can to survive on fast-food drive thru and candy bars at the check-out line. That’s ok, eventually momma will get back to the gym and grilled chicken as her kids become self-sufficient. Marathoners need to be running strong after mile 20. My special guy is 16, and I still have days where drive-thru or NO food seem to be my only options. But I need my heart, lungs, muscles and bones to last alot longer than most and that means I have to be much more careful of how I fuel.  Nutrition for you is as important as it is for your child.  Physical and mental health must be well-fueled.  

Rest. Marathon runners know that sleep is the key to their body’s performance the next day.  They listen to their body, so the night before and after a 18 mile run you will most likely find them in bed at 9pm.  Parents of newborns can make it through those weeks and months of no sleep because eventually their baby IS going to make it through the night.  I know special needs parents who haven’t slept through the night in 12 years.  Get some sleep.  You must allow your body and mind to rest, in order to perform at the level your child needs.  Do whatever it takes to get some sleep every so often.

 

It’s all in your mind.  I think the one thing about running longer distances that took me by surprise was how mentally challenging it was.  I assumed that the struggle would be physical.  My legs get too sore to move, so I stop running before I cross the finish line.  That never happened.  What happens frequently on longer runs is that my mind says: “this is too far/hot/long/awful, let’s stop running now”.  My legs can keep going, my heart and lungs are still pumping, but my mind is trying to shut it down.  Without minimizing the severity of your situation, can I suggest to you that perhaps your biggest struggle is in your mind?  Training my mind to not throw pity parties or be angry about my son’s condition took a while.  But eventually I succeeded in shifting my perspective and realized (as sadly cliche as this is about to sound) “it could be so much worse”.  If I shut down negative thoughts and welcome a new grace every morning to get through that day, I’ll make it.  Don’t let your mind be your enemy.

Embrace the marathon.  For the first few weeks of marathon training I woke up every Saturday morning thinking  “oh my gosh I can’t possibly do X miles today”.  And then every Saturday when the long run was complete and I was still alive, I felt the most overwhelming sensation of joy.  Maybe a runner’s high? I just know that eventually my Saturday morning mentality shifted so that I woke up anticipating that joy at the end of the day’s big run.  I began to embrace the fact that I was going to eventually get to 26 miles, rather than fear it.  My first years as a special parents were no different.  I woke up worried each morning, and approached each milestone missed, or specialist update with trepidation.  But eventually I began to recognize the profound joy within the journey.  I was able to see that I experienced depths of emotion, faith and love that most typical parents won’t ever know. I now embrace this role and cherish this special blessing that I’ve been gifted.  I look forward to every step of the way as a new treasure that will surely unfold before me as I embrace this marathon.  

running-shoe-photo

Special Momma, the Choice Is Yours

About seventeen and a half years ago, we were handed a Medical Report by a well-meaning geneticist. The photocopied pages outlined all of the possible (terrible) characteristics/symptoms/complications that would accompany our baby’s new diagnosis of a rare genetic disorder.  He was just an infant, yet the report predicted a tragic future.

Our choice that day, and every day since, was:  upon  which report would we base our lives.  We could treat this infant as if he were a disabled person, who would be defined by the limits and difficulties described in the reports.  Or, we could believe the report of the Lord.  My Bible reports in Psalms 127 that children are an inheritance of the Lord.  Psalms 139 says that our Heavenly Father has knit us together in our mother’s womb and we are fearfully and wonderfully made – all of us.

I’m not talking about being delusional, or living in a state of denial.  We are aware of the challenges that our little guy faced, and still faces.  But we have taken our example from the book of Numbers, when Moses sent out twelve spies to report on the land the God had promised them. Ten of them came back with a really negative report about the challenges to be faced.  But two of the spies saw beyond challenges.  All twelve agreed it was a land better than any they had seen before with wonderful fruit.  But only two spies understood that all the blessings and treasures were completely worth the price of a few obstacles.  Further, they insisted, the Lord would surely help them overcome.  Unfortunately the masses went with the ten spies, fearing the battle that would be required for such a wonderful prize.

So we base our lives on God’s promises – His report.  Just as in the example of the Israelite spies, the prize has certainly been worth the battles.  Yes, battles there have been aplenty.  But the reward, the treasure, and the promised land are exactly as reported!  Our son may have similarities to the original medical reports, but if I’m being honest he is much more accurately described by those Psalms.   It’s a choice we make every day, and in the face of every set back and situation.  You are just one choice away from a really good report! Won’t that be nice for a change?

melaniegomez3

#sorrynotsorry

And He said to them, “Come aside by yourselves to a deserted place and rest a while” Mark 6:31

This is one of those things that could get me kicked-out of the Special Needs Mom Club.  Could garner some frowns, and some quiet “smh’s”.  But I’m admitting it anyways, because you need to do it too.  I recently left my special guy.  For six days. And went to Paris! (cue gasp)

We special mommas are constantly urged to take care of ourselves.  Take some time, do something for “you”. But we don’t.  We can’t.  Sounds good on paper, but it actually doesn’t work.  Well, dear friend, you MUST.  And here’s the part you don’t realize, it’s for the benefit of your child.  No, not because he’ll have a happier or well-rested momma (of course, that’s a bonus). But because – and I know this is going to be uncomfortable – he NEEDS to experience life without you. Continue reading