Do you ever have those days when you feel sad for no reason at all? Not all days can be good ones, can they? But the dark days, perhaps, serve to make the bright days all the more radiant. Maybe they serve a purpose. I know on days when I feel disconnected, I long for a connection with God even more. And on all days, He is the there. Always ready to wrap me up in his feathers and allow me to feel His presence. If you can relate, then you’ll enjoy this short vlog:
Blessings to you!!!
Today is my 49th birthday. Don’t you find that as you get older, birthdays serve as a time of reflection? They become milestones, markers of sort, that represent who we are and the meaning of our existence. I’ve made some brilliant moves in my life, but I’ve made some whopper mistakes as well. While my heart holds fountains of joy, it also reflects the stagnation of regret. It’s life. And all blended together, the final hope, perhaps, is that our lives end up as a mirror, displaying only the image of our Creator. Where Melanie once was, now is only God.
My two youngest are non-verbal. And they get it. They were born getting it and as a result, they’ll never harbor an ounce of regret. Hope and Charlie will always be image-bearers. People consider them to have special needs, but those people have it all wrong. It is we who can learn from them. Here is my morning birthday celebration with the two who have turned my life upside down and all around in the most amazing way. Happy Birthday to ME!!!
As a parent, how often do you rush to meet the wants and needs of your children? If you’re anything like me, it’s a constant. And it’s a pleasure, too, isn’t it? To have the opportunity to pour into a life. How much more, then, does our Heavenly Father, who is perfect love, pour into us without a moment’s hesitation? If you can relate, you’ll enjoy this vlog:
Would love to hear from you!!!
Are there times you feel guilty about praying about the small things? Especially when there are BIG things going on all around you in world? Well let this VLOG encourage you today. God cares about the little things!
Have you ever wondered what God’s calling is for your life? The answer is probably much more simple than you ever imagined. Click the YouTube link below and leave a comment to share your thoughts:
down syndrome, melanie hollis, parenting a non verbal child, raising a non verbal child, raising special needs kids, special needs blog, special needs mom, special needs mom blog, Special Needs Parenting
The dreaded guilt trip. If you’re a special needs parent who is also juggling typical children, you know this trip all too well. Where’s that ticket back to normal, right? Managing necessary therapies and medical appointments on top of meeting every single one of your differently-abled child’s needs, you have very little time to meet the desires of any person who can take care of himself. Are you hungry? Can you make a sandwich? Then don’t ask me to stop what I’m doing to make food for your lazy bones. haha. Can you relate?
Life before becoming a special needs parent might have been about leisure, even though at the time we didn’t quite realize how easy we had it…but now our lives are about pure necessity and survival. As a result, parents often feel they need to apologize to their typical children for the unique challenges a special needs sibling brings to the family, but I never will. Here’s why:
First, I’m a believer in The Lord and His word. In Exodus 4:11, we become privy to a conversation between Moses and God. In this heart to heart, God explains that He is the One who creates disabilities. Scripture says:
“Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?”
Then again, in Jeremiah and in Psalms, we are reminded that God formed us and knew us even before we were born. In short, if God formed and created my two specials with Down syndrome, and if in His great wisdom, He also chose to not give them the gift of verbal communication, then who am I to judge? or to complain? or to apologize? If in His sight, Hope and Charlie have been perfectly crafted, then they should be accepted and embraced as such.
Second, life is hard. With the implement of sin and our arch-nemesis (satan along with his slimy little minions) life was designed to be a battle and a struggle. Without the hardships, though, there would be no test. And without the test, there would be no need for a choice of salvation and the promise of eternal life. James 1:2 says:
“Count it all joy, my brothers, when you meet trials of various kinds” … emphasis on when.
In a nutshell…if you are a believer, life will not be a big cake party…even though I LOVE cake, especially with icing, don’t you? But God says, “No! You shall not always have cake” (my paraphrase)…and it’s for a very good reason.
See Romans 5:3-5:
“….but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
And James 1:2-4:
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”
The trials and hardships, according to God’s word, are incredibly good for us. They sharpen us, mold us, and teach us to become more pliable so we can ‘be complete and lack in nothing’. Do you want tenderness? brokenness? gentleness? patience? Then spend some time with someone who is unable to communicate with words or with someone who is unable to walk or to hear. Look into their eyes and see past the disability into their heart. It will change you. It’s an indescribable gift when you see someone for who they are. Why would I ever apologize for giving my typical kiddos that daily gift?
Third, having been brought up with a precious grandmother who was handicapped, I have personal experience. Stricken with what doctors called the most severe case of rheumatoid arthritis they’d ever encountered, she couldn’t walk, turn her neck, use her arms/hands…and couldn’t feed, dress, or bathe herself. She never held me or hugged me, because she wasn’t able. I, however, never knowing her any other way, knew her simply and utterly as my Grandmomma.
When she needed water, even as a young girl who had to step up on a stool to reach the faucet, I’d jump up to fix her a glass with a straw. I remember holding it for her and allowing her to drink until I heard the familiar slurp of the last drop. When someone would call on the phone, I’d stand and hold the phone to her ear for as long as she wanted to talk. “A little closer,” she’d say with a sweet grin. And I’d proudly oblige. If she wanted the TV channel changed, I changed it. If she had an itch on her nose, I grabbed a tissue to scratch away. I did all of this as a little girl and never thought of it as unusual at all. When I became a teenager, she’d have me read the Bible out loud to her. At the time, I thought it was because she wanted to hear it…now, I realize she wanted me to hear it. I loved that woman so much. She was funny, smart, and the strongest person I’ll ever know. If I sit quietly for a moment, I can still go back to the pew I sat in at church, beside her wheelchair, and I can hear her singing “On Christ the solid rock I stand, all other ground is sinking sand…all other ground is sinking sand.” It will always be my favorite hymn.
Because of my grandmother, Elaine Morrow, I’m who I am today. I wouldn’t change that experience with her for the world. When I see someone who is handicapped in any way, instead of turning away, my heart leaps and I leap along with it…rushing to say hello, to shake a hand, or to give a smile. Because of her, I love the special needs community with a love I cannot begin to describe. She left an incredible legacy that is now being passed down through the lives of Hope and Charlie. I see it so clearly. During my childhood, I was given the invaluable gift of compassion and of service through my grandmother…and I rejoice in that gift. As that legacy was passed to me, it is now being passed along to my typical children as I watch them care for their special needs siblings. I’m thankful and not ever sorry.
So, to all of the special needs families who’ve heard the familiar whispers:
When you hear those empty words, just stand firm on what you know:
“Whatever you do for the least of these, you do for Me.” Matthew 25:40
There’s no time to think once you become the parent of a special needs child. I mean, literally, there is no time to think. In reaction mode, you are simply expected to be on every minute of every day. You anticipate constantly, actively seeking out ways your child could injure himself, choke on something, and escape from the house. It’s very much like being on a never-ending covert operation to protect those in your care. Once a well-meaning pediatrician who isn’t raising special needs children said to me in jest: “You know, you could order a couple of those big bubble balls and just roll Hope and Charlie around inside of them all day every day.” He laughed. I didn’t. I’ve had to reclaim pinched legs from the angry mouths of furniture. I’ve had to dig a whole piece of Chex cereal out of a throat with my fingers as my child was turning blue. And I know what it’s like to search for my little girl after she managed to quietly sneak away from a beach house after seeing a little boy playing ball down the street. Give me the darn bubble ball!
While it’s harrowing and not for the faint of heart, I must tell you, being a special needs parent is slowly transforming me into someone quite different…maybe even better. In three significant ways, in fact, this adventure has forever changed my view on life:
Lesson #1: To be remembered means everything.
I don’t sweat the small stuff anymore. For instance, I no longer fret over not being invited to a party, a shower, a wedding, or even a family holiday dinner…I get it. I’m different now, and there are people who will never feel comfortable with me and my unconventional lifestyle. As a result, I’ve learned that missing out on an invite just means I can use “babysitter” time to do something I love, whether that’s a movie, a dinner out, visiting the library or a museum, or laying on a beach with my toes in the sand. On the other hand, however, when those invitations do come, albeit they are very rare, I appreciate them more. To me, each invitation says: “I know you’re in the trenches every day, secluded from the typical world, but I haven’t forgotten you. Even though you might not be able to come to my event, I want you to know that you were thought of.” Yes, to be remembered, means everything.
Lesson #2: Collecting memories is more important than collecting dust.
Continuing in the vein of not sweating the small stuff, I also don’t give a hoot about whether my kids or my house look like they’ve been torn from the pages of Southern Living Magazine. My kids have sensory issues and neither like to wear clothes, so if I can manage to keep their private parts covered, it’s a good day. And my house? Thing-a-ma-bobs and trinkets become projectiles for non-verbal, temperamental kiddos (and sometimes for momma too)…so, my house is gloriously bare for the most part. My kitchen? It never closes. And I spend more time in the laundry room than in my bedroom and bathroom combined. I am a first-born who loves order, schedules, things that match, and clean smelling things (and people) … God has played a hilarious joke on me. But you know what? When my kids allow me to fix their hair and dress them up, and on those rare occasions when my house smells fresh and looks crispy clean, I bask in it. I mean, I sniff my little ankle biters and kiss their chubby cheeks until they’re shoving me away … and I walk through each room taking in the order of it all. In those times, though, I often reflect on the person I once was and regret how much time I spent on things that don’t matter. Pretty houses and fashionable clothing rot away and disappear, but the time spent mending a hole on a stuffed teddy bear’s foot, holding a hand that has just made a mud pie, and jumping up and down with your kids on a bed that hasn’t been made yet…those moments will stand the test of time.
#3: Love is always the answer to everything.
All of this brings me to the last and most important point. As a parent of a special needs child, I realize time is fleeting. Kids who have special needs often don’t enter the world with the mightiest of immune systems. When they go down, they sometimes don’t recover. I’ve spent months in a hospital as my daughter has gone through three very serious open heart surgeries, and on one of those occasions, she coded. I can take my mind back to that moment and replay it all in vivid detail. In that instant, I realized how fast I could lose her and how quickly everything would change. An invisible switch flipped inside of me that day forcing me to look at my life in a brand new way. If everything can change in an instant, then I must make every attempt to live my life to the fullest each day.
My favorite apostle of the twelve is Peter…probably because he didn’t always get things right, but still managed to love and serve with reckless abandon. Consider these words:
1 Peter 4:8-11 ….”above all things have fervent love for one another, for “love will cover a multitude of sins.”Be hospitable to one another without grumbling. As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God. If anyone speaks, let him speak as the oracles of God. If anyone ministers, let him do it as with the ability which God supplies, that in all things God may be glorified through Jesus Christ, to whom belong the glory and the dominion forever and ever.”
The greatest way being a special needs parent has changed me and my view on life is by chipping away all of the minutia, trivialities, distractions, surpluses and excesses in my life. This incredibly challenging journey has broken me down and has allowed me to “see”. So if I grab your neck the next time I see you and say “I love you” … well, you’ll know why. (and if I don’t, it’s only because you’re giving off some sort of vibe telling me to keep my danged hands to myself.)
Know this about me. My home is open. My heart is open. I always want to hear from you. I want to talk to you and to hear your voice. I want to hurt when you hurt and to rejoice when you rejoice. I love you. I honestly love you.
“…and the greatest of these is love.”
Oh, how I rejoice at being called to be a special needs parent. For once I was blind, but now I can see!