I want what the world cannot give me. I want peace. I want less worry. I want to not have to think about 599 future what ifs. But, here we are.
Busy what if-ing.
Me and you.
What if, what if, what if…
Jesus says, Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27
As He leaves His disciples. As He gets ready to die on a cross, to leave His friends, then to return to earth just to leave them again…
“I leave you with Help. The Helper. With God the Spirit. …with peace dear friend.”
As a special mama, filled with loads of mama trauma AND mama joy, I am praying for the peace that can only come from a Father God who loves me personally and intimately. Who loves my daughter personally and intimately, despite and maybe because of every extra need.
Jesus died to give you peace. He came in a lowly manger to give me peace. He promises you are loved and not alone. His Spirit is here in the late night hours or by the hospital bed when no doctor seems to listen or care. When your friends have moved on or your family doesn’t understand. When you are begging your kid to breathe! Or to stop running in the road, or to put down the drugs… Here is the baby in the manger, who grew to God-man just die so that you and I could know Him more intimately, and fall in love that much more.
Having a special needs kid will change your life, and from what I hear, there’s simply no going back.
The @NewYorkPost and @New York Times recently did a write up about a family with Trisomy 18, and a mom who is choosing joy, contentment and love over everything else. The way the write-up was written and the comments section on Instagram kinda… erk me to say the least.. someone even went so far to say that she and I are ruining the lives of our neurotypical kids… but yall, we live in a broken world. So, here’s my thoughts (cause you know, I got em).
There is NO going back now.
No going back to the former freedom, the former lens of life without thinking about eternity and Heaven and reconciling a Good-God and a “Broken”-Child.
For me, there’s no hiking and little traveling in this season – or very little and when we do, it’s a DOOZIE, but we do it! There’s no international travel. OH I do miss that! There’s no going to work without worrying about my kid(s). There is no going to bed without giving her medications and setting up the machine that helps her breathe. No leaving the house without stroller fans.
I have a TRIBE. I mean TRIBE. God has simply blessed us.
I have a few local family members, but my parents aren’t here and my in-laws aren’t here and I miss them. And, sometimes I need them.
But, I have neighbors and friends that have become LIKE family, or better than family. And, for that I am grateful. I know many DO NOT have that, and I pray God will provide it. Our church is the family of Christ, imperfect, but in so many ways, it is what God has called the church to be. Family. Special needs parents need this.
I do cheat. I work in medicine, and even still, it’s fricken hard.
I have a great team of therapists and nurses and I can’t move back home to my small town because I live 15 minutes from an overall great children’s hospital. My daughter’s life would be less amazing without her amazing team. And, so, yes, to have a child like this, you really need to (in most scenarios) be in suburbia or urban areas. I miss country roads and dirt-bikes and my country people sometimes, but we do visit. And we are blessed, there are 2 parents, engaged grandparents, and 2 incomes. We are so grateful. Single moms who do this, yall are the real Queens. Not all kids are as healthy as Ryn either. We know. Every child is unique.
My life didn’t end because of my daughter.Being forever changed isn’t always a bad thing…, as an economy, we spend trillions on self-help and improvement.I am a better me because of her. I am engaged, I am empathetic, and I am more loving than I could have been before. I dream about Heaven and live in the reality of our future-hope in Jesus. I love so deep. I am loved so deeply. I am a new form of me because of Rynnie. Find a special needs child or family and scoot close because yall, there is a love so deep to know. There are no words needed. She will love you and soften your hard heart. She will smile and your fears will melt. She will laugh and your anger will dwindle. You will meet resilience. You will meet hope. You will meet JOY – real Joy. Not because of circumstance, but just because… the world needs more people like Ryn – with this sweet heart, not less. More Joy.
Hey special needs fams, I have been trying to live in the here and now with Joy, with grace despite exhaustion… to trade Bitter for Joy,…
Ok Medicaid cuts pending, doom gloom, recent hospital stays for ridiculousness with this dang J tube, comparing our lives to “normal families,” … and bitterness can snake its way in just as sneaky as Satan.
This morning, our pastor gave a part of the sermon series on the book of Ruth. You know, Ruth, the book of the Bible that starts out really dark and tragic and ends romantically helplessly lovely with a wealthy landowner marrying this poor girl from another country who was outcast, hopeless, and alone (except with her also outcast, hopeless and alone mother-in-law Naomi who changed her name to Bitter). Cue Hallmark movie.
Ruth was poor with her husband having recently died and she was desperate. (Hello every desperate special needs mama.) And, this man, Boaz, marries her, takes away her shame and, ultimately, this unlikely pair are like — great-great-great-great-grandparents to the Man Himself, Jesus.
The whole book is a beautiful story of love and family ties and how God saves an “outsider” with nothing; both nothing to own, and nothing to offer. But, it’s also a taste of the future. It’s God’s beautiful literary “genius-ness” as author Kat Armstrong would put it. It is a story showing us that this marriage saved a poor girl who, without a husband, in a foreign land was left with no money, no income, and no family – no security, no hope, no rest… and this story is also a picture of us and of Jesus.
Jesus is our Redeemer, the perfect Groom, flawless, always loving, always a listening ear, and never leaving dirty laundry in the floor or snoring so loud you can’t sleep; in fact, Jesus says he comes to give us rest, security, hope, peace, and eternal wealth. He takes our longings and answers them all. And, like Ruth in this story at the end of Chapter 3, we are waiting for our wedding day.
Remember that engagement period?* You have the security of the ring promising marriage, the excitement (and exhaustion) of wedding plans, apartment hunting, and if you are me, thinking about your new family’s first animal? So Naomi (Bitter) and Ruth her outcast daughter could go from hopeless and bitter to hopeful and joyful and have the ability to rest. That’s the same for me and you, especially Special Needs Families. So bye bye Bitter and hello Joy.
That’s the sweet spot we live in as we await Jesus’s return, or our home-coming. We know we have this beautiful wedding and forever-life with Jesus just waiting for us, and we can live life here planning for that new life, that beautiful marriage. That’s why the Bible calls Jesus the Bride-Groom. The Groom is waiting, and has already paid the price for you. You married up for sure. Because, let’s be real, you didn’t give anything (if you’re like me, you’re probably too losing it just managing life with a special needs child, neurotypical wild ones and a full time job), so ya, you didn’t and you couldn’t give anything. Jesus says our works are like… something akin to used tampons.
And, that’s pretty gross.
Anyway, as a special needs momma; sinful, sharp, exhausted, and chasing my kid around with a suction bulb through church this morning, all I could think was, marrying Jesus; Dang, I married up. He is so out of my league.
And while all of us should wait joyfully for the return of our King or the moment we go to this Homecoming; we special parents wait in this mix of both EXCITEMENT and ACHING for Heaven. We are dealing with repercussions of a broken world just about 100% of our life on this earth from seizures to therapies to suctioning to AFOs. Even in the night, we sleep with, as I joke, but not really that much of a joke, one eye and one ear open.
Do not call me Naomi, call me Mara, for the Lord has dealt very bitterly with me.
Ruth 1:20
I like the story of Ruth because it gives us permission to hope in the Groom that is telling His church, the Beautiful Bride, “I am going to redeem you, I am going to heal you – you were worthless (and you might still feel that way, leading to bitterness, shame or sorrow), but because of me you are worthy.” It’s normal to feel bitter when life keeps throwing you super-fast-speedy-curve-balls that hit you smack dab in the face when you weren’t even to home plate yet, and didn’t even have a helmet on or your bat ready. But we can keep battling to trade bitter for Joy because of the peace of Christ.
As surely as the Lord lives, I will redeem you. BOAZ in Ruth 3:13
In him (Jesus) we have redemption, through his blood, the forgiveness of sins, in accordance with the riches of God’s grace. Ephesians 1:7
For more on the story, read the book of Ruth, it’s 4 simple chapters of sweet love in the bigger story of the Israelites and their famine and failures following God’s commands.
Listen to full sermon from Pastor Johnathan Price at Friendship Baptist Church Podcast, also concepts from NLT study Bible, the beautiful book Redeeming Love by Francine Rivers (an all time favorite), and 2 favorite special needs authors Nancy Guthrie and Sandra Peoples. There are truths about waiting, hurting and calling to God in lament (crying in a Holy way to God because sadness is not sin) from the book Dark Clouds, Deep Mercy Book by Mark Vroegop that God’s pressed into my soul. I also mention Kat Armstrong, she’s a story-line Bible study author who I currently am, through God’s grace, learning so much from.
Philly to Charleston at 6am with 3 kids ain’t no joke yall! We arrived at 4am and still felt like we were RUNNING into the plane.
Was it worth it? Yes.
Was it exhausting? Yes.
Did I get sassy, saucy and irritated with my husband? Yes.
Am I an imperfect daughter of the King trying to parent 3 kids, one who is so sweet and special and loves to puke at all the wrong moments? Yes!!!!!
MIRACLES: The Miracle Wasn’t Just the Baby
After a long, hard week of traveling with a special needs kid, feeling exhausted.. the kind like your body got hit by a truck and your brain is mashed potatoes and your heart feels like it got punched…, I am trying to remember God’s faithfulness.. Through the storms. Through each diagnosis. Every ultrasound. Turning tears to thankfulness… looking back and seeing what the Lord has done.
<we did have a great vacation, it’s just the realization that vacation is simply not supposed to be so… hard. So incredibly hard>
Giving birth to a baby all the doctors said was going to die prenatally or at birth wasn’t the only miracle in the delivery room – (although she is my favorite miracle!). As I look back 3 years later, the most unfathomable miracle is the peace I had as I was wheeled in to deliver my angel. Moments even before going in, a hospice doctor had come in to chat with us and our parents. To answer any last minute questions, and to ask us again about intubation, CPR, death, dying, funeral arrangements, and more ridiculously painful questions.
I was a heartbroken I felt no one else on earth could understand and.. at the exact same time..
somehow, peace overwhelmed me. I was in the depths of despair, in the deepest of pits, and I felt God in it with me. I truly believe with all my heart it was the Peace of Christ. The truth I couldn’t have learned otherwise, or believed in my depths when Jesus said,
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” (John 14:27)
I spent about 6 months of pregnancy and now 3 years lamenting (crying) to God. And, that lament sometimes turns me to praise.
God doesn’t always give us the physical miracle, but what if the real miracle is in our broken hearts? In our angry, hard hearts? In our jealous, envious desires? The miracle of peace, indescribable peace.
As I write this, I write mourning, lamenting, as news of severe flash flooding of the Guadalupe River took the lives of more than 20 campers from Camp Mystic. I write acknowledging that there are mommies and daddies, brothers and sisters who are in the first, rawest stages of grief. I pray for the miracle of indescribable peace. I pray for the peace of the knowledge of dancing and laughing and innocence in the arms of Jesus. With these parents, I long for Heaven. For healing, for hope.
Why do we even attempt to take our special needs daughter on vacation?
So. Many. Reasons.
First, because our special needs daughter is just that, our daughter. She has the dignity, worth and value of a daughter. We love her and if possible, we drag her little booty wherever we go.
There will be times and places we do not bring Rynnie. Usually it’s for her comfort – the girl doesn’t love hot, nor bright. She can’t quite sit up yet but you better believe I put her on a kayak and a paddle board with me (when it’s safe). She likes boat rides and loves family. So she vacations.
I remember when doctors pointed out that Ryn would have no quality of life. Well, look at the photos below and tell me she’s got no quality. Girl is a Queen, in all her own ways.
Second, my “love language” is Quality Time. What’s yours?
My Rynnie graduated Hospice in 2024, and is followed by Palliative Care. And while I don’t let my head or heart get too bogged down in the statistics of life-length with a child with Trisomy 18, I know that her life will likely be shorter than my other children. Palliative to me though means, aim for High Quality! Enjoy each moment, make memories and love well. Make her have the fullest little life she can… and that includes vacations.
Third, Rynnie is a sister. Wouldn’t it be weird if you went on vacation and your sister wasn’t there? Of course. Rynnie is a verrrry loved sister. Her siblings love her so much and even though it’s an incredible amount of work, I really believe they are happy to have her along for the ride.
There are so many more reasons, but one easy way to say it is that my family and my vacation is incomplete without all 3 of my kids. Rynnie requires a lot of medical equipment, a lot of work and some contingency plans. She requires me to lift, transfer and diaper change. I can’t do a laundry list of things I love to do as easily or maybe even at all. But, my family feels full with Rynnie here.
Notes to remember:
I am a FIRM believer in respite care and have a MIGHTY team of nurses and aide. They aren’t always available and don’t do overnights but I do one day wanna go on a hiking, biking, kayaking kinda vacation without Rynnie. I would only leave her in the competent and loving hands of our amazing team or family.
Rynnie hasn’t always been this stable. One time, we even AMTRAKED from South Carolina to Philadelphia when she needed too much equipment to easily get through TSA.
There are inherent risks in taking your Special Needs kid. Like, haha, joke too soon? You may wind up going directly from the airport to the hospital for an urgent procedure. Your child with Special Needs might have an immune system that’s less strong. Your sanity might be at risks packing, repacking, triple checking… You have to weigh the risks and benefits. You have to decide if the risks are worth it.
What tools do you use to increase comfort in your daily life as a Medical Momma.
“Day One”
Eeek. Remember type A and type B personalities? I’m type B, about to the max, except that my family leans even mooooore that way. And my husbands fam! type A to a tee! By God’s grace, my personality gives me some chill factor with Rynnie.
I don’t have all the perfect strategies for medical Momming but I think this is a good rule of thumb (and it sounds so cliche and maybe gets me into some trouble at times but.. hey…)
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.Philippians 4:6-7
I’m a mess by most people’s standards, my car, my house, my kitchen,… oh and my laundry, especially with Rynnie being the Puke Queen. I definitely lean on the friends and family and the Body of Christ around me. But, I also accept imperfection, accept a mess, accept a go-with-the-flow attitude as much as possible.
I also rely on the secret, but not so secret trick my mama taught me that is a cure all for worry. “Go take a bath.” Angie Meador, direct quote cure all. In my beloved tub, I soak away worries, and cling to trustworthy prayers of lament. Crying out to God, reading about the new Eden, and resting in truths of Gods character.
Speaking of the Body of Christ, I am a firm believer in letting people do their jobs. When Rynnie’s therapists are there, I try to do my 500 other house jobs, or momming of my other people. Taking breaks of course to cheer Rynnie on.
Lastly, I try to live with a HUMBLE and THANKFUL heart. Thankful to God that I get to be a Special Needs Mom instead of a grieving a deceased kid mom – that’s the statistic with Trisomy 18. I recognize so many grieving moms would love this walk instead.
I am Thankful to God for the people around me, the hospital nearby, and the life I get to share with these sweet kids Gods blessed me with.
I take all tips. I am imperfect and learning. Share away.
This was an unimaginable pregnancy from the day of abnormal genetic screening, to the amniocentesis, to the “slow leak” of my water a few days after the Amnio, to sitting in a room of doctors talking DNRs and hospice.
I say the pregnancy was unimaginable, and then… most of the days since then have been too.
One of the hardest things about being pregnant with Ryn was everyone commenting on our pregnancy. “You look so cute!” “A boy and a girl, you’ve got your pair.” “Oh she’ll be perfect, don’t worry.” “God’s got this.”
Somehow all the comments made it harder. As my belly grew, the fears grew, the comments grew, my heart ached more. It’s funny how what people see on the outside is so different than the realities on the inside. The poor growth, the high risk of still birth and early death, the other abnormalities.
And, how was I supposed to answer the “are you having a baby” question? Yes, but… we are being told she might not live? Yes, but she will struggle to survive? Yes, but I am mourning the loss of her already? Yes, but…… I am praying her diagnosis is a lie? It can’t be real?
She turned 3 this year.
That’s three years of suctioning. Three years of carrying. Three years of giving meds. Three years of carefully existing and trying not to bring home germs that could kill her.
And, at the same time, it’s three years of life I wasn’t expecting. Life I was told we wouldn’t get. It’s 3 beautiful, exhausting years of R leaving her mark, her firm stamp on my heart, on her big brother’s heart, and I really believe on the hearts of some of our friends and family.
Pregnancy heart ache was so.. hard. So real. Carrying a “dying baby” was like holding death in your belly, as your belly grew, the countdown to death ticked by.
Raising her, at times, if I let the science speak or the fear consume me, that ticking time bomb of a clock is still loud.
So, I aim for leaning in on the grace and peace of Jesus. On the family of God around me. On the here and now blessings of our great team of therapists, doctors and friends.
Some may say, she has no quality of life, but yall, follow my instagram (@meadorak) this girl laughs, floats, rolls, giggles, eats, and prefers strawberry ice cream and momma’s arms over everything else.
I am not sure if I will ever get the version of vacation I dream of. Honestly, that’s one of those, as long as My Angel is earth side, vacation will look “hard” to the naked eye, and often to my eyes. But a hard vacation is better than no vacation, and a vacation with your baby is better than your baby not being here at all. I long for Heaven, what rest that will be! No need for vacation, we will be in the arms of the King.
This week while traveling to see family… which of course isn’t gonna be easy, we needed a simple procedure. Simple, but… only interventions radiology can do it. The whole procedure takes about 10 minutes, but to make it through the ER and paperwork, and to get what we needed, even on a weekday, is EXHAUSTING. Chris and I joke d, “we been needing a date night, so here we are!” See the photo of us eating vending machine snacks at 9pm after four hours in the ER.
A Day In the Life: Travel Version
5:45am: started waking up my groggy little body after a late night of packing, checking, rechecking for suction bulbs, CPAP, feed bags and syringes
6:35am: pulled out of the driveway, Adventure on!
7:30am: midway through security check, Rynnie pukes a hard, sad, gut-deep puke.. is immediately covered in puke. Security line drama trying to make it through TSA (despite pre-calling TSA Cares.. which I do recommend if traveling with Special Family).
8:30am: board flight to see family and spend a week of glorious PTO on a beach with family but realize her Gastric tube is malfunctioning after all the retching,
8:40am: most people’s work days are just getting started, I am calling a hospital I am unfamiliar with to try to get in with Interventional Radiology for an easier procedure without a hospital admission for a tube replacement. I also post to my Physician Assistant moms and Philly Area PA moms group who were actually super hopeful. PAs do rock.
9am: flight out to Philly, not turning back now
11:30am: make it to Philly, stop at a BELOVED Wawa for long-awaited pretzels. Our son loses his first tooth on a soft pretzel. Memory made.
11:45: PAs from Penn, CHOP and Nemours are reaching out to me trying to help. Paperwork and procedures are still hard to navigate but easier than they could be. After flushing her tube, it seems that it’s working! Decide not to go to ER immediately and try to baby this one.
1pm: took a much needed dive in the deep end of Nana and Papa’s pool with my freshly swimming swimmer of a 5 year old. Rynnie naps
4pm: pick up Rynnie to get her to the car to go to beach and her G tube pours milk, a clear malfunction.
4:30pm: call CHOP and Nemours and learn that “Nemours will call on call IR team to come in for replacement, and “assured that they will” by ER triage team. CHOP says it’s a hospital admission and they will likely have to order her size tube (1-2 day admission)
6pm: arrive at Nemours Children’s hospital. Resident evaluates, takes long history. Orders x-ray. Xray is without contrast and shows not a thing. Other kids are with Nana and Papa, and of course we are worried about them. First night of vacation and without mommy and daddy at age 1 and 5.
7pm: still waiting
8pm: Attending comes in and says we can’t see anything, need imaging with contrast and then will call IR
9pm: xray with contrast complete, still can’t see anything bc imaging needs to be in the J tube and done by Interventional Radiology who still hasn’t been called
10pm: GI and Interventional Radiology are finally consulted.
10:30: they aren’t coming in. Admission recommended. IV line attempted and missed. Chris heads to beach with other littles. Rynnie begins to scream. Cry. Wail. Withdrawing from Gabapentin which I cannot give bc no functioning GJ tube.
11:30pm: Chris makes it to other kids. Rynnie still screams. I nicely requested nursing again… IV needs to be placed, baby girl is screaming and hyperventilating. Hospitalist agrees to order Intranasal Ativan.
… it never comes
12:30am: IV demanded, and placed. Rynnie has now been HOURS with no IV, no fluids. Lips getting dry and cracked, one diaper in the last 12 hours. She finally settled to sleep(ish). (The whole reason we are told we have to stay is for fluids and sugar regulation, tube malfunction).
1:30am: make it upstairs to a room
2:30am: settled, oh wait, just kidding, the respiratory therapist will be here soon…
3:15am: respiratory makes it and puts Rynnie on CPAP (breathing machine for sleep at night)
3:30am: Mommy gets a tiny drop of sleep
5:30am: vitals and nursing, Mommy is woken up
6am: nurse promises Rynnie will be seen by Interventional Radiology at 9am (a full 24 hours after tube was dislodged)
9am: Radiology PA (Kristen, shout out to you and all the PAs who encouraged and helped get this far) places new tube
10:30am: still awaiting discharge, Rynnie still without morning meds. Mommy missing her other kiddos morning snuggles.
And now, more than 24 hours later.. maybe vacation can begin.
This is the Special Needs life.
This is hard. Long. Exhausting.
This requires a skill in me that I hate, and does NOT come naturally. Demanding that people (the ER nurses who let my baby wail for hours while they were chatting and laughing) care about my sweet, innocent precious baby and giver her the care she deserves.
People should be OVER policy. IR should be called immediately (anyone on call is more likely to come in at 5:30 and not 9:30 or beyond). I should have went straight to the hospital on landing. You live and learn. You cry, you advocate, you miss time with your kids.. you long for Heaven. You ask for peace and strength in the here and now.
We had been wanting a Date night for several weeks… so hospital vending machine it is.
Romans 8:19-23
19 For the creation waits with eager longing for the revealing of the children of God, 20 for the creation was subjected to futility, not of its own will, but by the will of the one who subjected it, in hope 21 that the creation itself will be set free from its enslavement to decay and will obtain the freedom of the glory of the children of God. 22 We know that the whole creation has been groaning together as it suffers together the pains of labor, 23 and not only the creation, but we ourselves, who have the first fruits of the Spirit, groan inwardly while we wait for adoption, the redemption of our bodies.
There are the two things I have needed more than anything and two things I cannot buy. You see, I am not wealthy by any means, but I am a medical provider in a primary care office and with that comes the hard truth that as complicated as things are for me raising a special needs child, for other families, it’s likely a lot harder.
First, we are financially able to swing paying for *some* therapies, covering our daughter on insurance, and even for a private nurse/sitter a few hours a week when needed. But, we are also rich in medical knowledge and know-how, and in the ability to navigate a complicated medical system because I work in it.
Yet! The realities of a sick kid, the unknowns that lie ahead… like, who will take care of my kid if something happens to me? Will she ever walk? Will she ever say “Mama?” Will she die like most kids with her condition at an incredibly young age?
I can’t buy peace. I can only crave it. I can only lean in on the God who moves mountains and parts seas, who literally breathes life into existence. Jesus died so I could know His here and now peace, and His ultimate peace.
And that is where peace begins. With, through and because of the grace of Jesus. There is no real peace without the real grace of Jesus’s gift to us.
Because I can’t buy peace, I can’t buy a cure for every anxiety and every worry and how each worry leads me to be a little sassy. I can’t buy peace and that means sometimes my mind gets in cycles of the “what if” game. And that worry, instead of Lament (crying out to our Mighty God), in many cases is sin. It’s ok to think on these forever concerns, but when they consume me, I need more grace. I need more peace. I need forgiveness for not trusting in the goodness and the power of our sweet, Mighty, loving Father.
And, forgiveness is ours for the accepting. God doesn’t want us to live in these anxious, panicky cycles, but I truly believe He knows our hearts, He hears our cries and aches with us at the brokenness of this world. He wants us to cry out to Him. To say, God I have no clue what to do, I am exhausted. And to hear Him say, “but I do.”
So back to Ephesians 1:1-3
“To the church in Ephesus,”
Might as well say, “to the church in Charleston…” “to the people who make up the special needs church..” “to Friendship Church.”
God has blessed us with every Spiritual blessing. It’s our access because of the grace and peace of Jesus.
God has adopted us, made us daughters through Jesus. What a mercy, what an undeserving gift!
When R is sick and I am exhausted, up all night… suctioning, cleaning, doing more laundry than I could ever imagine, I long for nothing more than the loving assuring words of my family. And, like all families, sometimes, they aren’t there. Sometimes, they are busy with their own work, life, kids, or are simply oblivious to my needs.
But the God who created the moon and the stars, the God who never sleeps and is all knowing, who knows each exhausted, heart aching feeling says right here: adopted before we could ever do anything good or bad to lose or gain his love. Our adoption is only through Jesus. And our adoption is his grace to us. His mercy. And our adoption, these sweet family words mean: He cares. He listens. He aches. He has blessings of peace to give.
My girl works harder than anyone I know. Just to stand.
Having a special needs kid will change your life, and from what I hear, there’s simply no going back. The @NewYorkPost and @New York Times recently did a write up about a family with Trisomy 18, and a mom who is choosing joy, contentment and love over everything else. The way the write-up was written…
Hey special needs fams, I have been trying to live in the here and now with Joy, with grace despite exhaustion… to trade Bitter for Joy,… Ok Medicaid cuts pending, doom gloom, recent hospital stays for ridiculousness with this dang J tube, comparing our lives to “normal families,” … and bitterness can snake its way…
The real miracle wasn’t the miracle of the perfectly healed baby, it was the peace I had as I was rolled into the OR to deliver the baby that was told would die.
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10 minutes before she was born: Do you want CPR?
We had this talk about five times before, but the day your kid is born, man that’s a hard day to be asked… “Do you want CPR?” “Do you want to intubate?” “There’s a good chance she won’t survive birth.”
It’s supposed to be joyful. They are supposed to be tears because you are so happy you just can’t hold them back. Instead, they were tears of – I am scared to death. I can’t do this. God, please hold me. God, give me miracles and when those miracles are over… give me more.
There is no circumstance, no trouble, no testing that can ever touch me until first of all, it has gone past Christ, past God, right through to me. If it has come that far, it has great purpose.
The Making of a Man of God, Alan Redpath (a book on how God made David into a man of God)
Our daughter was diagnosed with Trisomy 18/Edwards Syndrome at 16 weeks. At first I thought… Trisomy.. oh it’s like Down Syndrome… it will be hard… so hard, but I got this. We got this. There’s hope, there’s support, there’s a rocky road I can travel. Then, I briefly researched and found… it wasn’t Down Syndrome. It was considered a “Life-Limiting Diagnosis” one that would mean our baby would likely not survive pregnancy, birth, or her first week.
I believe in miracles! I believe in THE GOD of the Bible. The God who made the Universe, the God whose people failed him over and over and over (and over and over and over), and yet still, chose to expunge their records so that they could be with Him. I believe in the God who created the sky and the seas and holds all of this together. I believe this God loves me to the point of His son’s own death as payment for my clean record.
I also believe in science. I work in medicine and I see its dang amazingness and its inadequacies on the daily! I see it as a gift from God for us to learn more about Him, to serve one another, and to care for His Creation. I provide primary care using the most evidence-based medicine I can.
So you see – these worlds collided and collided hard when my own child was diagnosed with a diagnosis that would mean she wouldn’t live and IF she did, it would be a very, very, hard road.
A Medical Mama’s Tips, Tricks and Tales 