Author Archives: RedefineSpecial

Get yourself some “but” 

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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…..

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Why Me?

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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

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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

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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

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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

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“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”

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“…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

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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

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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 →

To: YOU

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A special needs mom’s Christmas wish list is far from typical.  And it mostly contains items Santa can’t manufacture at the North Pole nor fit under a tree.  But I was reminded this past Sunday at church that my wish list has nevertheless been fulfilled.

What’s on your list, momma? Do you need a peaceful night of rest? The answer to an impossible situation? Strength to move a mountain or stand in a storm? A warm, loving, non-judgmental hug? Well, here it is, just for you, and it came on Christmas morning:

For to us a child is born,
    to us a son is given,
    and the government will be on his shoulders.
And he will be called
    Wonderful Counselor, Mighty God,
    Everlasting Father, Prince of Peace.

He is all you need.  Sounds simple, almost silly, but I promise it is true.  Let HIM be your counselor this year, lean on HIS might, know HIS fatherly adoration of you and your child, and rest in HIS peace that passes all understanding.

If I could reach out to every special mom I know, or who reads this blog, this is the gift I would want you to have.  Merry Christmas dear friend!

Nick and his school friend Shankar, celebrating Christmas with LOTS of Joy!!

 

Special Priviledge

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I would like to confess to you a recent realization: I am the product of Special Needs Privilege.  You’ve heard all kinds of privileges being thrown around as accusations lately, but this one is probably not at the top of the list.  However, I’m now fully aware that such a thing exists, and I’m one of its victims.   Continue reading →

Just Keep Swimming

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You know that scene in Finding Nemo where Dory and Marlin are swimming  deep into a bottomless, dark cavern?  Marlin, Nemo’s Dad,  has no idea where they’re going or what will happen next, yet his friend Dory is happily singing “Just Keep Swimming!”  The two of them together sum up my special mom split-personality perfectly.  Some days I am overwhelmed by changes, unsure of where I’m going and what will happen next.  But other days, when I’m at my best, I can happily sing to myself, “just keep swimming!”

This past month has been chock full of changes: Continue reading →

when i’m 50….

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I’m thinking about my age, as you can see from today’s title.   Since it’s my birthday, my actual, chronological age cannot be avoided or denied.  I’m 48. (This post was recently revised, on my 49th!)  But I must admit that most of the time I live my life feeling like I’m somewhere in my late 30’s (anyone else?)  I honestly forget that I’m “pushing” the big Five-Oh! Over the past few months, however, the impending half-century mark has been on my mind. A lot. Continue reading →

The (awkward) Mother’s Day Spotlight

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“For you created my inmost being; you knit me together in my mother’s womb.” Psalm 139:13

Mother’s Day is upon us!!!  As a mom, it’s MY holiday.  “Mom” is probably the deepest, most powerful identity that you could find buried inside of me.  Giving birth to my children changed me in powerful, miraculous ways and that label is branded on my heart forever: “mom.” Continue reading →

Special Needs Mom Life: Refreshing Waterfalls or Devastating Flood?

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Psalms 42:7 Deep calls unto deep at the noise of Your waterfalls; All Your waves and billows have gone over me.

I’m a little old school, so I’ve been hesitant to go all-in with Facebook and other social media “relationships”.  I define friends as people who I’ve met in person, and over time developed lots in common with via shared experiences. But it’s 2016. I am currently collaborating on a book with a woman I’ve never met! It’s a new and curious experience to encounter people online whose passions, experiences and mission align so strongly with my own.  I’m not sure of where she lives, no clue of her favorite food or TV show.  But nonetheless, I now count her, and several other FB strangers, among my friends.  

I recently submitted our diagnosis story for the new book she is writing, and she edited the heck out of it – LOL! Truly she’s a fantastic editor, I’d love to send her everything I write, but I feel that would wear the friendship thin pretty quickly.  Within her editing, however, she highlighted one sentence and commented: “I absolutely love this sentence!!!! Wow. Such a powerful thought, and worthy of a blog post all on its own.” Continue reading →

Running or Just Running Around?

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H”I run in the path of your commands, for you have broadened my understanding” Psalm 119:32 NIV

if there’s a one word description of my daily/weekly life, it’s running. Now before you get the wrong impression, let me make clear I am NOT a “runner”. I don’t lace up running shoes and head out with my headphones and bouncy ponytail – I see those women all over town and admire/envy them – they’re adorable. I’m talking about running around. Racing from one thought to the next, multi -tasking at light speed between multiple coinciding responsibilities, and our car keeping these winter roads hot between therapy appointments, story time, group activities, meetings, etc.  Most moms I know are this kind of runner. Special needs moms just replace the usual running to soccer practice or ballet with doctors, therapies, medications, behavior crisis, etc. Continue reading →

It’s Time to get over your Perfectionism

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“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.”Luke 10:41-42

pickle jar

 

The jar of pickles in this picture reminded me of the most important lesson that this perfectionist-natured person has ever learned.  Perfect is over-rated.  Not only is perfect over-rated, but I’ve truly learned that when life is perfect, you miss out on all the best stuff. Continue reading →

Santa Claus Forever! (revised re-post)

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It’s the most wonderful time of the year! Hear me out.  I know that the holidays seem loaded with landmines for special kids.  They bring questions, uncertainties, health or emotional crises, party/travel/gift anxieties, or even uncomfortable interactions with well-intentioned family members. I’ve been there, friend, my special guy is about to experience all the highs and lows of his sixteenth Christmas.   Continue reading →

Here’s Not Here

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If I admit something to you that you may find shocking, or at least slightly inappropriate, do you promise to still be my friend? Here it is: I love “The Walking Dead” tv show! My guys got me into it during the first season and I’m hooked.  OK, you promised, so now you have to keep reading.  This blog isn’t about zombies or guilty pleasures. But the title, “Here’s Not Here” is a quote by one of the main characters this season.  It’s how he deals with the reality around him of a post-apocalyptic world.

My latest revelation in the special mom journey, is realizing that – for all those early years, the struggle-to-comprehend years, the more-questions-than-answers years – Here’s not Here.  Let me explain, with the help of my (least) favorite prophet, Jeremiah. Continue reading →

When being a joyful mom doesn’t make sense

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Here I sit, in the Easter Seals lobby.  Extra large Miami Dolphins coffee mug in hand, laptop in front of me, headphones on with Israel & Newbreed’s latest song “My Strength” blasting in my head phones.

“You’re the joy no one can take away, You’re the peace inside I can’t explain! You’re the strength I need, you will always be my strength!”

I will admit to you that I am openly dancing in my seat!  Honestly, these people are lucky I have enough self-control to not be clapping or, worse, singing along. So much joy right now.

I am not in a party environment. The joy level here is zero.  The parent/guardian/caregiver faces are not celebratory.  The whispered conversations seem foreboding.  I wonder if the passer-bys think maybe my coffee mug has a little whiskey in it for good measure. Continue reading →