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.
History and Harbor Views Peter walked on water, Moses walked through water, Moses’s mom, well, she had the faith to let her baby go in the water to save him. God said, “when you walk through the waters, I will be there.” Isaiah 43:2 The view from the MUSC Children’s Hospital is the notorious Charleston…
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For your daily dose of reality check: my half time show was calling 911 for my daughter who was struggling to breathe. Stop. Breathe. Didn’t that feel good. … Let’s take a moment to thank God we can sit upright on the soft, squishy, cushions of our fluffy couches in our safe homes and loud…
One week in the hospital watching your kid gasp for air, the next we are singing “It is well with my soul” with the brothers and sisters in Christ that are holding our arms up when they are weary. How can it be? How can you sing it is well when your kid is non…
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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 