Dear “Chromosome 8p duplication & deletion”:
This letter is to inform you that we have decided to let you go. We are aware that when the geneticist originally assigned you to our family, by strapping you around our second child at only 6 months of age, she indicated that you would be with us for life. However, we’ve decided to go in another direction. Continue reading
My special guy is 19 years old! The transition to adulthood has been an unexpected and challenging journey. It has been such a huge life change that I’ve recently presented parent workshops on “How to Navigate the Transition to Adulthood” at several conferences for special needs parents, to warn them of the pitfalls ahead. One of the biggest pitfalls I see parents of adults fall into is actually one we all come across many times throughout our child’s life, beginning the moment after we receive their diagnosis. Continue reading
The truth is that as much as I love my special needs journey, my children and my family, if you had given me a choice at the moment Nick was born, I would not have chosen this life. If the doctors had asked, “We have a cure, would you like us to use it?” I would have said “yes”—one hundred times yes! Of course 19 years later, I wouldn’t change a thing, but that’s not true of the beginning. So there is something extraordinary about someone who chooses to join in this journey, someone who can opt out and take the road more easily traveled. That one, she is my heart’s delight, and she is the one I want to tell you about today.
My typical son Ben met his first girlfriend and future wife, Priscilla, three years ago. She was 20 at the time, certainly old enough to understand immediately what the differences were in our family. As much as we were thrilled to see him embark on this next phase of life, we were also realistic enough to know that a disabled younger brother is not the most attractive trait that a young woman can find in a suitor. This sweet, beautiful young lady met the whole family just a few weeks after they started dating. We went to a restaurant, sat in close quarters, and Nick was in his full glory: funny, messy, cute and gross. It’s how we do restaurants and we didn’t filter the experience for her.
As time went by, and Priscilla somehow stayed in the picture, I noticed that she didn’t simply tolerate Nick. She loved him. She played with him, took care of him, and genuinely developed a relationship with him. She went on vacations with us, babysat him and discovered the highs and lows, ups and downs that come with Nick now—and in the future. Yet still, when Ben proposed to her on January 1st this year and she said yes, my momma heart was overwhelmed. Not because she was saying yes to life with Ben—he’s awesome and a great catch, if I say so myself. But she was saying yes to Nick! She was willingly, voluntarily, joyfully accepting a life with a disabled brother. She knew exactly what her “yes” entailed, and gave her whole heart anyways.
I wanted to share this part of our story with you because it’s important for you to know that others don’t always perceive your child as a burden. It is possible for strangers to find joy in our special children. We sometimes feel like our child is viewed as a liability to the outside world. But I’ve found that is not the case. The right people, the ones God sends into your life, will see them with a heavenly perspective.
Since Ben was very young, I prayed for his future wife. I prayed for her family, her protection, and for her to be the perfect mate for Ben. I even prayed for her relationship with me, that she and I would be wonderful friends and that she would love my son deeply and forever. What I never prayed for was the perfect sister-in-law for Nicolas. I don’t know why that never occurred to me, but God knew that the greatest trait that the future Mrs. Ben Gomez would have would be her friendship with Nick.
If you have typical kids, here is an important reminder for them—and you—today. Their friends and future spouses will be blessed by their special brother or sister, and will relish being part of their unique journey. If you read 1 Corinthians 13:4-7, it becomes clear that the answer is simply found in true love. There is no reason to worry about the baggage that comes with a special needs sibling, because in God’s design and in the eyes of love, it is not baggage, but rather an extraordinary blessing. I didn’t know that when I first started out, but somehow our sweet Priscilla has already figured it out, and my heart and mind are simply overwhelmed at the miracle of her “yes.”
“For our God is [indeed] a consuming fire.” Hebrews 12:29
I recently met a mom whose three-year-old has had health and developmental struggles since his birth as a preemie. For the first three years doctors said, “he’s a preemie so he’ll be delayed but eventually catch up.” But now at age three, the catching up isn’t happening and she’s on the verge of a new and more permanent diagnosis. Her words to me: “I am completely overwhelmed.” Drowning in a sea of specialist appointments, insurance verifications, pre-school decisions, and the endless list of emotional and physical issues that come with the new reality that she is becoming aware of, without really understanding it at all.
I did my best to reassure her that God will supply all that she needs to get through this season, spiritually, physically and mentally. The truth is, it isn’t just the diagnosis season that can be overwhelming. Special needs kids have a way of taking over every aspect of our lives. They take all our energy. They fill all our thoughts. They hijack siblings and spouses and demand every ounce of our attention. The truth is they can be all-consuming. The Bible says there is one who is all-consuming. Spoiler-alert: it’s not my son with his rare genetic disorder. Continue reading
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 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 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.
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:
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…..
“Take courage my heart
Stay steadfast my soul
He’s in the waitingHold 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
“…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.
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
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!!
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
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
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
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
Not for the first time, I find myself comforting a pregnant momma whose doctors have diagnosed a problem with her unborn child. Prenatal tests and needles have determined her child to be imperfect – medical opinion agrees that termination would be in the family’s best interest. I’ve experienced these conversations before: the doctor provides all of the medical and cognitive complications that very likely will be present at birth. The uphill battle that will ensue for the child to survive, and the imperfections that will remain. I have no issue with doctors presenting the facts for parents to make an informed decision. Families make these impossible decisions every day. My only issue is that doctors cannot inform any parent completely. Their prognosis has no way to include extremely important facts that parents should know. Continue reading
OK, here it is. The one millionth blog post about Jordan Spieth since Sunday. What? you, my dear friends who spent Sunday afternoon doing laundry, DONT know who that is? Well, that’s ok. Neither did I. Continue reading
Recently while perusing my Facebook stream, I gave my usual overly dramatic eye roll to some quiz about how you rate yourself. Pa-LEASE! Who has time for those stupid quizzes? Then, of course, I quickly gave myself a mental rating without having to suffer through the quiz. (You now can give ME an overly dramatic eye roll). Disclaimer – I do not often lack self-confidence – my initial rating was pretty high. My initial response to any challenge is usually positive and self-assured (you know, glass half full!). But then later that day, alone with my thoughts, I became aware of how poorly I was rating myself on a variety of fronts, throughout the day. You see when I examine the motives of my heart, and weigh all that I know to do versus all that I do, I can be very negative on how I “rate”. Continue reading
It’s the most wonderful time of the year! I had decided not to post at all after Thanksgiving. To just let my thoughts and notes marinate for a while, and get back to the blog in 2015. But then Ben said something about it – like it was too long, or I should blog a holiday message – cant remember what exactly he said, but I think he was right…..
Because last week we saw SANTA CLAUS! And I wanted to point that out. I have a few special mommas who read my blog and their kids are a lot younger than my Nick, and the holidays may not feel so festive. Perhaps they bring questions or uncertainties, health or emotional crises, party/travel/gift anxieties, or even uncomfortable interactions with well-intentioned family members. Continue reading
Redefine Special 