The Parts

I suppose I ought to make this post two parts.

Part one.

I haven’t updated in a while and I suppose I am a bit ashamed of it. Mostly because I didn’t write only to avoid the disaster I created when I switched everything over to my own domain. I was so excited to start my blog journey free of domain issues, and hoped it would help bring in some income for our family, but when the switch became so overwhelming and time consuming… I just kind of shut down. It is an awful habit of mine, to be honest. I have no clue how to code, or how to add ads, or how to make this blog how it is “supposed to” look. I just know how to write. And the longer I put it all off, the more I wanted to avoid it. I felt like a failure.

Part two.

Tonight, I had to write. I have so much on my heart and on my soul that I just feel cripplingly heavy. My insides are just, I suppose it isn’t describable unless you have felt it.

I don’t know where to start.

I took on the role of Southeastern Coordinator of the Chromosome 18 Registry and Research Society. I am beyond happy to take on this volunteer position. Part of my 2019 goals was to help more people, and this was a direct line into that. I want to help parents to advocate for their babies. I want our story, Georgia’s story, to inspire hope. I want to change the world for these kids. We have been so lucky and so blessed with Georgia and her health, and it just doesn’t seem right to not help others when we can. I don’t know if any of that makes sense, but I am trying to straighten everything out in my mind as I type. I am trying to just, get this out of me.

Here is the thing about helping new Trisomy families. It isn’t easy. Most Trisomy moms of older kids give up on helping newer parents because it is emotionally exhausting and honestly, can be quite depressing. Yes, it is wonderful when you help a new mom or dad find the care their child deserves. But then, you feel invested in that child, and when something happens to that child, you feel all the emotions as if it were your own. I know that it is strange, and maybe I am too much of an empath, I am not sure. But it is hard to watch a baby you have tried to help die.

The other side? The parents don’t listen to your advice and then the baby dies. That may even be worse. Watching a little boy or girl pass away because you urged that mama to get that baby help, and then it just doesn’t happen. God…. that will break you. It will incite anger and sadness, which is a deadly combo. You don’t know who to be mad at or how to process the grief of losing a child you most likely never met. It is hard. So hard.

But I want to help. So I will be strong. But damn, today, it was just exhausting to be strong. It was exhausting to shuffle my child from appointment to appointment. It was exhausting to be a mother while balancing the job of comforting an expecting mother who is frightened. I am rambling off the list of equipment she needs to advocate for while buckling my child in her car seat. I am trying to give my child 100 percent and their child 100 percent, and it is exhausting. And then, another parent messages me, and I feel compelled to help her too. And then a father, in another country, with most likely no hope for his child, messages me in a foreign language asking me what to do. What to do? I don’t know. I can only give what I have learned in the two years of stalking Facebook groups for information. I know I am not obligated to help, but I feel called to do it. I feel like God gave me this task. And it isn’t one for the weak of heart.

And maybe there is a part three to all of this. Maybe I am more emotional right now because my sweet little girl is turning two years old in less than five days. The thought of it makes me want to cry. Every time I think of her birthday, I relive every single moment. The good and the bad, the ugly and the beautiful, the trauma and the victories. Everything washes over me, and I for a special needs mom who most likely has some kind of PTSD from watching her baby have needles pressed into her forehead, that reminiscing can be emotionally exhausting on its own.

There is so much joy in this journey. There is beauty where you least expect it. I love the lessons God has given me in this amazingly overwhelming journey of parenthood. I love that I can embrace the different. I love that my daughter’s smile is worth so much more because we fought for it. I love to see her thrive, to see her play, to hear the doctors and therapists and nurses just in awe of her accomplishments. She is a miracle. And miracles do not come for free.

I sit here now with tears falling into my lap as I think of the sacrifices and blessings that my life has encountered in the last two years.

It’s been beyond words. And honestly, unbelievable. In my child alone, I have witnessed God’s goodness, His infinite love, and His power in prayer. I have see her brain heal itself, her heart heal itself, her tiny airways open up. We were told so many things would just not be possible, and yet, here we are, with an almost two year old who chugs strawberry milk and shakes her head no when I ask if she missed me. She is the child I prayed for every day when I was pregnant, and the child I mourned when we received our diagnosis. She has, by all definitions, been fierce in the face of adversity.

God knows I am grateful for the miracles. I am grateful for the strength. I am grateful for my incredible marriage that took a hardship that would cripple most, and we internalized it into our own sort of super power. If it wasn’t for our miracle baby Georgia, I can’t imagine where our lives would be. Maybe easier, but less full, less happy, less joyful.

And I want others to feel this. I want others to see God’s goodness. I want others to believe that prayer can change things. I want other Trisomy 18 kids like Georgia in this world… because their parents had the resources and knowledge to give them a chance.

I’m tired of watching these babies die.

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On that note, forgive me as the site goes through some changes as I attempt to figure out how to make this a successful-ish blog. I appreciate every comment and every share and every bit of support. It truly gives me purpose.

Nothing Is Impossible

This morning, I am watching my daughter try to crawl.

She does this every morning. She rolls onto her tummy ans and stretches her body as flat as she can. She smacks the floor with both hands. She pushes with her legs, but no movement comes. She kicks and wiggles and pushes up with just her arms or just her legs… over and over and over again.

It is heartbreaking. Eventually, she lays there flat, rubbing the blanket she is on. Then she begins to cry because not one attempt was successful. She rolls back onto her back, exhausted from trying, and put her hands up for me.

Later, we will practice standing. Once upright, her proud smile will cover her face. She will gain the confidence while holding my hands to let go of one. She looks around, grinning ear to ear at her new perspective. She begins to become braver and attempt to move forward… she falls. It is funny the first time. She laughs and gets back up, ready to be big again. Again, she is lit up like Christmas lights, but she won’t try to walk again. This time she will just stand, to the point that eventually her legs will give out from their muscle weakness. This time, she won’t try again, and with every effort I put in to get her back up, she will cry and become limp in my arms.

When I think about what my daughter would say, if she could speak, when asked what she wants for Christmas, I think she’d ask to walk. I think she would look at Santa and beg for a body that didn’t succumb to weakness. I think she would want balance and coordination and not to feel helpless anymore.

My sweet daughter, that is what I want for Christmas too. I want to see you cruise furniture. I want to find you in places you shouldn’t, unrolling paper towels and throwing toys in the toilet. I dream of seeing you rush your dad as he enters a room and I can’t wait to hold your hand as we walk through a park.

I cannot wait.

I keep praying my girl. Praying for healing… praying for strength… praying for understanding in God’s timing and works.

We will get you there, my love.

Thankful

This morning, we woke up as we do every day. You drank your bottle, while I sipped my coffee. When you were done, I held you and told you it was Thanksgiving… your second. You stared at me, intently watching my lips. I told you I was grateful for you being here another year… I told you how amazing it is to have you here each day. You began to squirm as most kids would, and I let you get in your walker to play.
Thanksgiving is not my favorite of all the holidays. I’m not a huge fan of stuffing or gravy, and getting up super early to gut a large bird wouldn’t be one of my most loved hobbies. But, much like everything else in my life, this holiday holds more sentiment than it did before you were born.
I suppose technically it is your third Thanksgiving since you were in my belly for your first. You were safe and warm and perfect, as far as I knew. Your father and I were so completely unaware and unprepared for the next few years before us. Everything was ignorantly blissful and perfectly normal.
Your next Thanksgiving you had grown so much. You were rolls upon rolls, and looked nothing like the tiny five pound baby I had held a few months ago. You lit up for your favorite movie as we spent our holiday in a new place. I was so absolutely proud of how far you had come.
And now, this year, you are in a baby walker, cruising our living room, smacking your toys. You are becoming a twonager, bored quickly, and with very stern opinions. You throw things and laugh at yourself and smile when someone sings to you. You are everything to be thankful for.
I can’t help but think that you aren’t even supposed to be here. Your heart shouldn’t be beating. Your lungs shouldn’t fill with air. According to the sheet of paper I was handed back when you were one month old, your massive amount of defects should have overwhelmed your supposedly frail body by now. You were supposed to die.
But you didn’t. You gave us a few scares. There were nights you turned blue and I fought within myself if I had enough time to call 911 or if I needed to try and save you myself. One time we were in the car with your brothers when you started to choke on your own vomit. I pulled over while the boys kept yelling at me that something was wrong, and ripped you from your car seat. I remember screaming for a nasal bulb (as if your brothers knew what that was) and pounding your back to clear your throat and nose. Another night, I tried to suction you and you had a mucus plug block a nasal passage. You started to turn gray while I held you to my chest and tried to help you clear it. I wondered if I could run to my phone but I knew you’d be dead if I waited for an ambulance.
But we made it… and for that I am thankful. I am thankful for the early mornings started with your coos. I am thankful for the days full of therapies, specialists, and Mickey Mouse Clubhouse. I am thankful for the bathtimes and the playtimes and the crooked smiles. I am thankful for every second with you.
Happy 2nd (or 3rd, but who’s counting?) Thanksgiving, my fierce daughter. Every day is full of thanks with you.

The Letter

Dear friend,
Can you tell me what it’s like? I promise, I’m not intending to be rude, just genuinely curious.
The only child I have, well, she is different than the others, and while I am not sad or disappointed, I am curious how it feels to be you, instead of me.
How does it feel to hear your baby say mama? Does it fill your soul like the smell of cookies baking? Did you cry tears of joy? When they grab toys and figure out their intricacies, do you marvel at their hands? Did you swell with pride?
I know it must be exhausting to watch that precarious tiny human all day. When us moms joke that we kept the kids alive all day, your meaning must be much different than mine. How was it, when they were tiny and new, to hold them without cords or tubes? Did they look you in the eyes? Did they latch onto your chest, willingly and eager? Did you get to hold them in your hospital bed as you recovered?
I wonder if I am missing out. We both have our blessing but mine came with different instructions than yours. I love her and I would never change a thing, but some days I marvel as your child communicates so easily, and I catch myself realizing that everything you and I have in common may not be much at all.
My home is not baby proofed because my baby doesn’t try to get into things. She lies there without a word, innocently entertained in the same toy for hours. Do you get to explain the things that happen? Does your baby understand why you correct her? Mine does not, and it kills me. I don’t even know if she knows I love her. But God, do I love her.
Dear friend, don’t be mad when I don’t always want to see you. Some days, it just hurts to know that there are parts to parenthood I was unequivocally denied. I get bitter, not because my lot is less than yours, but because it isn’t the lot I had envisioned.
I mourn more than just the words and steps, but the future and it’s overwhelming uncertainty. I mourn her wedding day. I mourn her first car. I mourn the grandchildren I will never have.
My friend, I am sorry if this makes you uncomfortable. I feel uncomfortable that I feel this way… that I watch you in awe and wonder. Your life is like watching a movie’s alternate ending, and my curiousity just gets the better of me.
I hope you understand, my friend.
Sincerely, the special needs mom.

Anxiety

Anxiety is hiding in your bathroom at 3am crying because the panic of life overwhelmed you.
Anxiety is taking the long way home so you can bury your emotions before you see someone you love.
Anxiety is drinking too much wine just to quiet your own mind for a little while.
Anxiety is biting your nails until you bleed.
Anxiety is obsessively cleaning your kitchen baseboards out of the blue because you’re trying to avoid your feelings.
Anxiety is snapping at the husband who loves you because you’ve lost control of your emotions again and anxiety is not leaving the house for days because you are scared of the stress.
It is falling down the rabbit hole of what-its until the panic manifests into believing you’re dying. It is crying, begging the person holding you for help because you can’t breathe… your chest is too tight… the anxiety is crushing your lungs.
Anxiety is rashes on your skin from stress and bags under your eyes from lack of sleep. Anxiety is wanting to ask for help but too worried what the other person may think. Anxiety is hitting your knees in prayer because you know there is absolutely no cure for your pain.
Anxiety is trying to hide your pain because you want to protect the ones you love from having to carry this burden with you.
If you are struggling with anxiety, you aren’t alone. The voice in your head is wrong and you are not a burden, a mistake, or broken. You are perfect in God’s eyes and He is here for you, you just have to be quiet and listen. You don’t have to carry this alone. I am here, too, if you need me. Just say the word. You are stronger than this.

Caregiver burnout.

I am tired. I say that more often than I’d like, and even after the hours of sleep, the weakness does not fade. It is more than physical exhaustion. It is an emotional wear and tear of my soul.
They call it caregiver burnout.
I am sure it starts with the physical exhaustion… the nights of interrupted sleep by monitors and fussing… the nightmares induced by stress and not calmed by the wine. It all wears down your body and as our body becomes weak, our souls begin to spread thin…. trying to cover all the bases of who we assume we should be to everyone. And repairing our souls falls to the bottom of the laundry basket with the lost socks and loose change… lost until they are needed and it is too late.
Suddenly I can’t seem to complete the most simple of tasks. Washing dishes seems to become this overwhelming burden. I’m exhausted after changing a diaper. The days become this huge struggle and I am waking up and already anticipating the next time I can close my eyes. And the worst part is that when that time comes, I can’t sleep. And I lay here trying to pray back my connection to God so He can come help heal me in my time of need.
It is quiet in my home excluding the snores of my husband and the rain hitting the woods outside. I should be asleep but my anxiety of what needs to be done and the stress over the amount of energy it will consume overtakes me. I’m just like every little browned and fallen leaf out there… being swept away in a storm because I have fallen from my roots.
I can’t stop praying even when it makes me feel more empty. God, do you listen to my soul even when I can’t? Will you lift me even when I’m weakened by my own selfish antics? I always find myself running into this hard wall of heaviness and I never stop before it is too late. Can You be my emergency brake? Teach me to love myself enough to stop before it is too late.
I am tired. So I will offer it to God and pray He can hear me and heal me, even through the storm.

I am tired.

I am tired.
I am tired of watching babies like mine die.
I’m tired of seeing pictures of these babies in the hospital.
I’m tired of seeing them be discriminated against.
I’m tired of posts from other tired moms fighting the damn system.
I’m tired of fighting the system.
I’m tired of paperwork and repetitive phone calls. I’m tired of being on hold for hours with insurance. I’m tired of bills and white envelopes covered in red letters. I’m tired of hearing “no” over and over again.
I’m tired of watching my husband work 60 hours away from our home and we still never gain any ground. We still are beyond overwhelmed. We are exhausting all our means. We are just trying to feed our kids and keep the heat on.
I’m tired. I’m tired of fighting depression. I’m tired of the loneliness. I’m tired of waking up tired and ending the day exhausted.
I’m tired of the burn out.
Thank you to my friends who call and text. Thank you for the occasional cup of hot coffee from the place I used to go every morning before work. Thank you for the gift card to get a fancy bra or get my nails done…. even though we all know I’ll never have the time or opportunity to do it.
I just want this fight to help someone… even if it isn’t me. And that’s why I went ever stop fighting.

Some Days

Somedays it’s just harder than others.
Some days I’m completely convinced of all my daughter is capable of. Others I cry because she won’t bear weight on her legs.
Some days I can almost see her brain working to form words. Others I cry because she hasn’t said “mama” yet.
Some days I’m completely full of fire inside because of her smiles. Others I spend mourning the life she could have had.
Some days I am motivated and called to push her through therapy even if she cries. Others I feel like every failure is a stab in my heart.
Some days I’m happy she is here and doing so well. Others I have to push myself through because I’m so sad she isn’t like other kids.
Some day I can see God’s plan and understand why our path is so difficult. Others I mourn the pregnancy and delivery I was denied.
Some days I think I’m the luckiest mom in the world. Others I feel shorted because my only child will always be more work than anyone else’s.
It isn’t always rain clouds and storms, but it isn’t always rainbows and sunshine either. Some days I don’t feel like a damn thing could threaten my joy and others I am sent into a fit of depression because I saw another kid crawl half her age.
I love my daughter. I will always fight for her and for my own happiness in this journey. Just some days are harder than others.

here.

If you are facing a new diagnosis and need someone, I am here.
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If it’s 3am and you’re crying about what your kid couldn’t do today, I am here.
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If you just opened your mail to find another negative therapy eval, I am here.
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When you’re so tired you just want to scream, I am here.
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When your child is admitted to the hospital for something simple that would never effect a typical kid, I am here.
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When a complete stranger makes remarks about your kid being different, I am here.
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When your husband and you aren’t speaking to one another because the stress has caused a space between you, I am here.
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When you’re celebrating the tiniest inchstone in your child’s life, I am here.
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I am here for your moments of weakness and your moments of loneliness. I am here to enjoy the littlest things and the simplest joys. I am here to walk beside you as you fight for you child, because you have helped me fight for mine.
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You’re in the tribe now, and it’s a beautiful thing.
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Please feel free to comment, like, & share.
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#hopefortrisomy #childofgod #georgiaonmymind #trisomy18 #edwardssyndrome #compatiblewithlife #compatiblewithlove #trisomytoddler #trisomymom #specialneedsmom #specialneeds #specialneedstoddler #trisomystrong #redefiningtrisomy18 #morethan10percent #advocatelikeamother #speakuplikeamother #sheisfierce #littlebutfierce #fiercegeorgialynn #tinysuperheroes #warriorbaby #chosen #thisiswhyweadvocate #simonslaw #chdwarrior
*Photo is not mine. Another fellow special needs mom shared it.
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Special Parents

There is this saying I hear sometimes, “God only gives special needs kids to special parents.”
Does He?  While I truly believe God chose Georgia for me, I do not think it was because I was special or fully suited for the job.  Honestly, I think God knew I needed her more than she needed me.
And in her short 20 months on this earth, she has honestly taught me more about myself, God, this world, and all the people on it than my 30 years of life has.
She has taught me that I am braver than I think.  She has taught me how to love without fear of the future.  She has taught me that I can do incredible things.
She has shown me how much God really loves me.  She has taught me more about prayer and faithfulness to Jesus.  I see His blessings daily, and she is one of them.
She has taught me that the world isn’t full of awful people.  She has given me the chance to see true generosity, something I never knew existed.  And in turn, I learned from the outright kindness of others… it makes me want to be a more charitable person.
 
I think God saw this path I was on… and He knew I needed something to change.  He saw my selfishness, my shallowness, my anger, and my sadness for what it was, and He gave me my own personal angel to help me be better. I get to care for one of God’s chosen ones, and I am so blessed for every second I get.  I cannot stress that enough.
 
I do not think God gives special needs kids to special people.  I think He gives special needs kids to the ones who need them in their lives, to become better people.
To become more like our children.
 
 
 
As always, feel free to share. <3airbrush_20180925142847