For most of us a new year is an automatic time for reflection. It’s why new year’s resolutions are a thing: we look over the previous year and decide what should be different for the next one. This particular new year is also a new decade, which is an even more daunting venture into auditing our previous performance and honestly analyzing where we stand. A decade ago for me seems almost unrecognizable. Many of my special needs mom friends were not such – had no idea about such – only one decade ago. But although we can point out the stark differences, I also want to take a minute to remember what remains the same. 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.”
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 as we read and hear the word of God.
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
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
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.
“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
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
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
“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
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.
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.
“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.
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.
And 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.
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)
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.
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…..
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
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!
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
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.
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?
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