A year of Rory

July 15th we celebrated a year of Aurora Rose. What a blessing she has been, the value and joy she brings to our family! Grateful to look back (even at the hard memories and moments) and grateful to look forward.

“For I know the plans I have for you says the Lord..plans for good and not disaster, to give you a future and a hope!” - Jeremiah 29:11

Video to celebrate the past year of Aurora - I started these videos for Jed..creating a short video each year for his birthday..and now I get to for Aurora Rose. Set to a song that I sang and prayed all through pregnancy. May the words to the song be a form of worship as we celebrate this past year and life with Aurora. It’s already done! Amen!

true value of a human ...

It’s been awhile since I’ve updated on this page... I was prompted as I got a notification asking if I wanted to “renew” our website as we are coming up on a year now. 

Wow – a year, hard to believe. It feels like so much life has been lived in this past year and that so much has happened. Often times as you get older it feels the years get faster..but this past year felt extra long..and things that were only one or two years ago in some ways feel like a life time ago..because life has changed so drastically. 

We’ve had some ups and downs, but mostly ups the past few months. We are so grateful for Gods continued provision. We moved into a new home in Cartersville, GA. And 3 doors down are now some of our close friends from Atlanta. Built in community as we start in a new place. Closer to family and yet still driveable to work and dr. appointments. 

We now have a nurse that comes 4 days a week to care for Rory so I can work (still working mostly from home). Though just when things started to feel manageable,“normal” , sustainable… we got a curve ball..fighting insurance and home health …who knew advocating for a child who is differentabled would be so hard? Require so much time, and so much work….I’m thankful God has put us in this position for Rory, to advocate for her…For Andrews knowledge in the health industry as a medical professional, and for my experience with project management, because it takes a lot of relentless persistence, attention to detail, and forethought to document everything, to get the care we need for Rory…it’s sad that the healthcare system can be so challenging to navigate, especially for children with unique health circumstances that take further explanation than what someone may read in a file on paper….it’s exhausting at times….but also an honor to get to be the one fighting for her, to be the coach in her corner, cheering her on…in a world that was not made to understand her or in some cases even value her.

It seems we must always be ready for a curve ball..because they do seem to come more often these days wth the unique circumstances we are navigating. But at the same time..WOW God. He truly does care for us, and provide for us in ways we would not have thought to go had we been the one behind the wheel.

I also feel God has given me a new lens to look through, in a world where value is so often placed on physical ability and intellectual ability...I now see so much more. That the value of a person should be meausred not by those things, but simply because their heart beats…as a child of God. Therefore they deserve love, they are worth, they are valuable. period.

The days I feel beat down, I remember so early from our story with Rory what Andrew said “we aren’t scared of hard….we are not scared of hard!” And I remind myself to take a deep breathe, to be brave, and to ultimately let go . I believe God wants us to work hard, to be good stewards, to give it our all, but there comes a point where things are beyond our control..and we must take deep breathes, and center ourselves back to peace, to remember we are not in control, we are not God… to share our worries and our fears in the form of prayer, to petition for what we hope and need and then ultimately rest…be still…remember… God is in charge. No matter what we do and don’t do..he is in control… He will fight for us…we must only be still….he provides for the birds and the bees so what makes us fear he will not provide for us? His children. His way of provision doesn’t always look like what we imagine..but he does provide, especially to those who cry out him in prayer for help and rescue. 

I’m not sure many people still read this..as my post are irregular , but if someone is still reading this…. 1. Thank you for your love and support of our family. 2. I pray that you too can find time to be still, to take deep breathes, to remember you are not in control….and to lift up your praises, and your worries and concerns to God. He hears you, and he cares for you and he can use even the hardest of circumstances for good. 3. You are valuable, not because of your intellect, your physical capabilities, because of the things you do our don’t do…but because your heart beats and you were created in Gods image. 

May we all be kind, may we all have grace, may we seek peace and not strife, may we value different, may we assume the best, may we work hard and be good stewards of what we have been given, but may we also not over pressure ourselves or others and remember to take time to be still…to pray…to listen.  May we find comfort in Gods plan and know that we are in his hands, always…even when it may not feels so….he will provide. Have hope, and take heart …for he has overcome.

Trust and peace , crown and curse

Trusting Christ and Gods provision in times of dark can be hard...but it is through trusting in Christ that we also find peace and overtime as you trust you’ll see the light start to shine again. 

As we get close to Easter I think about the contrast between Good Friday and  Easter Sunday. Because of the curse of sin Jesus endured the ultimate suffering...suffering greater than any of us can truly understand and imagine... yet because of that suffering there is redemption and hope and eternal life... the crown came after the suffering, the suffering had to be endured because of the curse of sin. But after all the suffering the stone was rolled away and there was light.... the brightest of all lights..light eternal. 

Because of Christ’s sacrifice suffering is not the end of the story for any of us. Even when we feel stuck in suffering..a greater future does await. We can have Hope because of Christ’s sacrifice. Therefore it’s through trusting in Christ’s plans for our future that we find peace. The peace that surpasses all understanding, the peace that only he can give. 

Because of the curse there was suffering but after the suffering there was and is a crown . There is light and there is hope. 

It’s hard to trust Christ and find peace when you are in a season of unknown...when you feel you can’t see what the future holds... when you’re constantly in pain, whether physical, emotional or both…but often, in time, things start to become more clear., the blooms start to appear again after a strong pruning. 

Each day we are seeing more and more light in our life, light in the future. The future has felt unknown and scary at times through much of our suffering but as I trust in the peace and hope only Christ can give I see more and more light, I become grateful and thankful of the past…the current, and excited for the future..a future different than I may have written had I had the pen, a future I never would have imagined, but a future that is still good that is written by the most creative, caring, restoring , magical one of all...written by our author our creator. 

If your future feels unknown and dark at times I encourage you to trust, to trust in Christ to find hope and peace through trusting..and to remember the crown came after the curse....and though there was suffering..the suffering didn’t last forever..there was an end to it. Good things are ahead for those who wait and trust in the Lord.

——

Thanks for reading these words and hearing the messages on my heart. I’m no theologian but I write what I feel and what I know from what I’m personally experiencing, from what I learn through the living word. To be honest I’m not sure who or how many people still read this.. this blog started as a way to keep family and friends praying with us updated on our precious Aurora, and then it morphed into a mechanism of healing and processing for me.... healing through writing. As life has continued things have been busy and I’ve lost my rhythm for how often I can come here to scribe. But from time to time I come back as it heals and I hope it also encourages others in some way.

For any readers still curious :

Aurora was doing pretty well for a good stretch but the past week has been HARD. She got a cold that turned into RSV and we’ve been hospitalized twice now. She can’t seem to keep food down, and has an awful cough. She also is having some issues with her gtube.

It’s been hard and exhausting and we’re just ready for her to not be so sick and struggling. It’s scary to think this may be our new norm for anytime she gets a cold (from what I hear from other moms with kids like Rory) It’s hard on her, on us, and also on Jed he doesn’t understand why mommy or daddy are gone all day and night at the hospital with her. But we lean in to the suffering knowing it will not last forever. We remain hopeful and above all else (when in desperation) we pray and wait..and pray again!

A few specific prayers right now:

• That Rory would recover from RSV ..that she would stop coughing and keep down food, staying hydrated and be able to be home and normal

• That her gtube site stays healthy and clear of infection and that the granulation tissue build up would clear and heal

• We have been approved to get a private duty nurse to help during the day while I work. Praying for this person God brings to us. For opportunity for us to be light to them and them be light to us..for a good fit for our family.

• We are waiting to hear back from Katie Beckett if we qualify which would give Rory state funded secondary insurance coverage and be a big cost savings covering all that our primary insurance does not. Our case is in front of the medical board and we are waiting to hear back in a few weeks hopefully! (They say most people get denied the first few times they apply but we’ll see)

• For continued good signs of no seizures! very grateful for this!

• For continued growth and development and beating the odds stacked against her

• For more smiles and joy and peace and happy memories being made at home with her brother and family

Don’t forget to smile…

Our little Aurora has been smiling so much lately and it is an absolute gift. She also has a lot of hair starting to come in too...Wondering if being off the antivirals is playing into both those things. All I know is I am so thankful for her precious smiles. 

This girl in her 7 months has already given us so much perspective and has and continues to teach us so much. 

I am grateful to know her...and she is reminding me the power and value of a smile, of joy, of love..unconditional love. 

I once remember hearing this quote......”a smile is the universal language of kindness “  ... something we all could use more of..what if we just smiled more... if we didn’t worry so much about what we know, or how well we “perform”, how much we can do... but we just focused on being and smiling , not fake smiles …pretending everything is alright..but real smiles of joy…the worry free, thankful for life kind of smiles. The smile that knows something, someone, THE ONE is in control and therefore we can take a deep breathe and smile.

Rory is not crawling or sitting or “ performing “ like an average 7 month old does..she likely never will perform at the normal expectations for her age...but she smiles and oh how those smiles fill our hearts with love, with joy, with contentment with peace. They make me proud and thankful to be her mama. Such a gift from God for a little girl who can and does smile. 

So this week I hope to take a lesson from Rory to worry less, to not try to be a human “doing” but a human being who simply smiles and fills the room with light and joy. To not focus on the milestones I should be hitting and meeting but to just simply be..and smile knowing my smile can bring warmth and kindness and ease to others! That in smiling we find peace, in remembrance that we belong to the Prince of peace.

So here’s to worrying less and smiling more (often easier said than done..thanks Aurora for the constant reminder) 

Prayer above all else…

Just when I feel we get our groove ...it seems we lose it again... steps forward..steps backwards. When I feel like I’m good and stable my ankles and knees give out and remind me...BUT GOD... I need you, I still always need you more than I realize. And I find myself feeling helpless again, realizing I can’t fix everything (good thing..sometimes I try too much when really I just need to stop trying and pray above all else). 

Rory had her big procedure for her gtube and I’m so thankful the surgery went well. The hospital stay was a little rough though and her recovery has set us back some too. The stomach bug also went around our family and Rory has a cough that she can’t seem to shake ever since her surgery. So much so sometimes she coughs herself sick and can’t keep her food down.

After a rough day of Rory coughing and spitting up feeds I lost it.. I got so mad , and cried out to God why this burden? Why can’t I fix her pain and discomfort..I’d take it all on if she could be healed and content and happy. I’d take any other burden why this one? Why a daughter I can’t help..whose problems I can’t solve..whose needs I can’t fix? Who often requires more than I feel I have to give? All I want for her is joy and peace and healing and comfort? Why must she be in pain and discomfort God? (savior complex much? Needing to be able to fix everything… ) Any other parents out there ever feel this way? Humbling to remember it’s not our job to fix, we simply should do the best we can and know it’s not up to us...we will fall short..we can’t fix it all! Prayer is always necessary. And a reminder that Gods heart hurts when our children hurt too. It’s not the world he intended for us or them. And better brighter days are ahead. Pain and affliction brings us closer to him because it reminds us of our need for heaven, reminds us the importance of prayer.

After my melt down and Rory spitting up several feeds Andrew Jed and I prayed as a family and God showed grace, Rory kept her next feeding down..she was calm and content. 

It’s not perfect, and she’s still recovering and coughing but God reminded me he cares and he listens. Even for the little things.

If I’m honest, after praying all through pregnancy for God to heal Rory and then for her to be born not “healed”, I think a small part of me sometimes doubts  prayer when I’m at the bottom. I get angry...and doubt God will honor my cries out to him for help. I re-open that wound and feel abandoned often before I even ask for help....but even if she wasn’t healed. She is here, and she is wonderful and precious!…the truth is...whether God answers the way we want or not we must keep on praying. He cares, and even when his answer is different he’s not abandoning us. He sees more and farther than we can see and he knows something better awaits us. One day all will be fixed and all will be healed.  

So no matter how big or small , no matter previous circumstances, prayer always matters and is always necessary. The act alone also heals, as it reminds us we are not the savior..so May we all stop trying and getting so worked up when we “can’t”…because He is the only one who can. God cares, he listens, so don’t give up on prayer.

Recently Jeds been praying for “baby sister” too. For her to not be sick to not cough and feel better with no boo-boos. The innocence, the boldness , the simplicity of children.  May we learn from it! 

So on that note...pray with us for Rorys recovery..from her cough, from her surgery. That’ll she’ll get used to her new feeds, start feeling better, start sleeping through the night again.  And continue to thrive as she grows and develops. 

And prayers for our family as we continue to figure out the future and what new normal looks like. We have many blessings we are grateful for but are still praying for God to map out our path, to open doors and help us in getting back to more sustainable rhythms. To help us continue to shift towards thriving. In our ne normal.

We are grateful for so much support from family and friends in this season!

Find your groove and keep on…

The new year is here and in some ways I feel like we are starting to get our groove...Rory still has her hard days and moments but overall I feel like we are getting a rhythm. She’s had more quiet pleasant times , I don’t know if it’s her new feeding schedule, getting bigger and growing some or what but all I know is it’s starting to feel like we are establishing a new normal (for now). Some days and moments are still really hard, and our normal still looks different than the “normal” of parents with a typically developing child...but it’s nice to feel like we are getting there(With so much support from family we are thankful for). And each day I fall more in love with her and realize even more the blessing and gift of getting to be her mom. No matter the sacrifice/challenges it is so worth it and I wouldn’t trade it. 

I am also so thankful for how at peace and calm she was over the holidays especially. The last two weeks of December were low key and filled with family..such a gift after this year. I think she liked having the time with family and it made her chill and happy.

So it’s a new year, and we remain optimistic for what is ahead...even though already 5 days in we’ve had some hard moments, hours, and days (like our country) ... we aren’t giving up hope. One of my goals for 2021 is to find thriving in this new norm. I feel like we’ve been living in survival mode for too long (or at least I have) and it’s time to shift from surviving to thriving . There are several factors and tactics that help play into making this shift (believe me, I’m going to write a book about it one day soon here ;) but what matters most?! Mindset and heartset... setting your mind and heart on above...on Christ, on the kingdom. Keeping positive, hopeful, faithful and not giving up. There will always be hard things and disappointment this side of heaven. We must try to keep hope and reflect the light others need and that we ourselves need. Letting go of the past normal, and embracing the new ..knowing you will get your groove again..it just may look a little different and require different things from you. 

As Pete the Cat would say ...just keep moving along and singing your song..no matter what puddle you step in! It’s all groovy! 

Health updates:

• Rory had an EEG this week to determine if the spasms she has are seizure related..still awaiting her results

• G-tube surgery...it’s scheduled 1/21. Rorys first big procedure to get a tube placed in her stomach to help with feeding long term (bye bye NG) prayers for a smooth surgery and recovery with no complications.

• Had to stop the antivirals again due to low white blood cells..so praying her WBC and neutrophils go up again so we can finish out the medicine (it’s been helping..her viral load is down to about 400 now..it was 1 million when she was born (still unbelievable she’s here with how high her load was)

• Continued prayers for her development... for daily miracles as she grows and for her ultimately to be happy, at peace and not in pain.

Lastly prayers as we make decisions for our future as a family. For wisdom and clarity on where to be.

Thankful for another new year!

Triumph or tragedy you decide ....

It’s been awhile since I’ve updated…life has been moving a little faster, with the holidays and being back at work...it’s hard to get everything done and keep up with every little thing. But even with that I’m grateful for the holidays, my favorite time of year with Thanksgiving and Christmas. Even if they look a lot different this year. The purpose for celebrating is still there…even if we can’t all be together..which is hard…but we still can celebrate… celebrate our gratefulness, our hope for eternity, the gift of salvation that came from the birth of a child in a lowly, humble place. The child that brought so many from different walks of life together.

So I am grateful for the holidays and I’m also grateful for a job with a wonderful company and family and work team that has shown me grace and allowing me to prioritize Rory and family while still contributing to work.

So much of this journey we are on has been reminding me the importance and power of perspective…in all things…

I was reminded about this quote from a book I read as my sister mentioned how powerful it was for her... from the book Power of the Powerless -“Children like...(Rory) … exist as is. We decide if they are to be our tragedies or if they are to be our triumphs.”  I’m guilty sometimes of looking at Rory and thinking how tragic it is she won’t meet the same potential or have the same opportunities as our son Jedidiah who just seems to be excelling right now mentally (2 going on 20). But then I remember what a triumph she is...her story and situation, though different and sometimes hard, is such a gift and brings so much joy and is a story of a little girl that continues to fight SO hard. A story of beauty and grace and life. A story of mystery and unknowns like our God... the author of the mysterious who holds all the answers we seek. I want to choose the positive perspective more, for her, and be strong for her…like her. The life and faith lessons this little angel has and will continue to teach us are uncountable.

This year for so many has been filled with tragedies, which we do need to properly grieve, but we must find our way to celebrate the triumphs. The beauty, the mystery…

Perspective matters... and it’s an ongoing continual choice ... I sure fail at choosing it often, Andrew often has to break me out of my slump/downward spiral and remind me to choose it… but I hear the more we choose it...the more it becomes a habit...habits are hard to build but once you do build them they can also be hard to break! (Believe me, I’ve got plenty of bad habits that need breaking too!) I want to build a habit of positive perspective, of courage when I’m weak, strength and endurance when I’m tired, singing when I feel like grumbling, grace when I’m frustrated, and joy when I’m sad. I want to always choose triumph over tragedy. 

For Christ is king and is on the throne ....so the triumph is already here...we just need to live into it (Easier said than done….but the inspiration I need, thanks sis for the reminder). 

Now from the inspiration to the updates and prayers….

Our little girl is finally on the chart for something...can you guess??? Not height...not head size…but weight. This lil chunk is now 2nd percentile in weight! She’s even got a few baby leg rolls now …11 1/2 pounds to be exact! (We made the percentiles.. ;) 

We are very grateful for her weight gain! Though I am not a fan of the ng tube and tape on her face…the annoyance it brings and how it makes her skin so raw….but its worth it because it’s helping her get what she needs to grow. 

Aside from growing great Rory has also been having some episodes where she gets extremely fussy and tightens her body. We are hopefully getting an EEG in the next little while to determine if it’s seizures or just neuro irritability . Praying it’s not seizures and that it’s something we can solve for and help find a way to control for her to have less discomfort and pain and more peace. Because of her neurological situation she is very sensitive and prone to be easily startled/overstimulated...but these spams seem to have increased and come from nowhere sometimes (or so it seems). So trying to dig in to make sure we know what’s going on.

We pray she continues to thrive...and for wisdom as we try to discern her needs and what is going on medically (as she, like all babies, can’t tell us what’s really going on) as well as what is best for her comfort, development and ability to thrive both short and long term.  

We still feel like we have so much to figure out for the future, but are trying to make the most of today, and be grateful for the blessing of family and so many of our needs being met and provided for in such a trying year for so many. 

I heard this quote and not sure where it came from exactly but love the truth it speaks in light of this year for us and so many… “We can only appreciate the miracle and awe of a sunrise, if we have first waited in the darkness.” A sunrise puts our troubles into perspective. No matter how dark life may seem now….may we cling to hope, the hope that a sunrise (and THE sunrise) is waiting on us in the horizon. The hope that a new day may come.

the dance of life..

A few steps forward, a few step backwards…that’s how it often feels so far on this journey. Just as things feel like they are going well and progressing it feels like we hit another setback and step back. But what if that’s not the case..what if it’s not a forward backward straightline…but it’s an all around the room dance. Where both backward and forward steps are required to make the dance so beautiful? 

I was thinking about this as Rory got her NG tube back this week (feeding tube that goes through her nose). I remember how excited we were when she was able to get rid of her feeding tube in the NICU, and now we have it again. Rory is still nursing during the day but it was decided to place an NG and do a continuous feed overnight to help with her weight gain. It’s just been slow and she needs the boost. At first it felt like a step back to me – but really I realized it’s what is best for her. To give her more food for more growth. These first few years of development are so important and we want to do all we can to give her every chance to succeed and be her best self. So the more nutrients for the more growth the better. Even if it means an uncomfortable tube (that stretches mom beyond her comfortability with managing at home…..for someone who used to not be able to look at needles when I had blood drawn..I’ve come a long way 😊) 

It was hard, she is still getting used to it, I imagine it’s uncomfortable having a tube go in your nose, down your throat and to your stomach, but it seems to be working…she gained over 1 ¾ ounces a day this past week now weighing 9 ½ pounds. And now that shes getting used to it (and that we got some antacids for her reflux too…) she seems to be doing better. Feeding during the day is still sometimes a challenge, and we still can’t get the girl to take a bottle….but we will keep trying and if she never does take a bottle that’s ok! What matters is that she grows and gets what she needs nutritionally!

Rory also was able to go back on the antivirals – so hoping that continues to fight the virus (her viral load was up last check since she’s been off the medication for a month while we waited on her WBC). 

Andrew and I also started back working this week. I am grateful to be able to work from home! We are getting used to it, but I think it’s going to work. Grateful for our amazing family (espeically Cici) – helping to take care of Jedidiah – as we plan to keep him out of daycare until Rorys immune system is stronger and the spread of COVID cases are not so high. Rory in the meantime is my favorite co-worker these days…though she sure sleeps on the job a lot ;) (which is a blessing )

Our prayer list for this week…

• For White Blood Cells to continue to stay up now that we are back on the antivirals

• For all things NG tube – that it stays in place (no dislodgement…and that mom stops worry and fearing over dislodgement or other things going wrong without us realizing it), and that Rory gets used to it and that it doesn’t cause her discomfort.

• For sleep at night – Rorys sleep hasn’t been as good since the NG but getting better

• For feeding to improve – Rory tends to run out of energy towards the end of the day and get overstimulated and not eat as well….we also are still praying for her to be able to take a bottle. As it turns out she’s lip tied and may have a tongue tie working agianst her (like her brother was) so talking to specialist to see if we should fix that (if it’d help remove some barriers with her bottle taking challenges or just disrupt nursing more…)

• Prayers for continued development and growth within her brain and head…praying for miracles as she develops and all things brain plactisity for her! For doctors to look back and be amazed at a miracle only God and not science can explain!

• Above all I pray for God to take away any pain and discomfort from her and to give her peace and joy and comfort and a good life.

Ending with an excerpt from a Bob Goff devotional that encouraged me…

“Sure, there’s a lot to be concerned about, but we have even more reasons to be hopeful. Here’s why: Jesus said His kingdom wasn’t of this world. He said evil would win for a while, but that His kingdom of love would have the last word. And He said those of us who follow Him will be the ones who are laying the groundwork for His return. We’ll be the runners who sprint ahead with the good news of what’s coming. Don’t believe the people who tell you there’s no hope. It’s everywhere. It’s like the smell in the air right before the rains come. We have hope because we trust in the God who sits above every conflict. We bring hope when we choose to fix our eyes on Jesus rather than on all the distractions around us. Next time you hear bad news, ask yourself how you can be hope in the midst of it.” – Bob Goff …live in grace, walk in love devotional in the Bible app

The good days and the hard…

It’s funny how one day can feel like things are so good and that life feels doable again...’we got this‘...then the next can feel like...’how ....are we ...going to ...survive?’ It’s also funny how much the temperament of a two year old and newborn can influence these feelings 😂🙃😳 

Perspective matters: Like most people we have our good days and our hard days...trying to work on my attitude and mindset to help when those hard days come to have strength. The truth is weakness is OK .. realizing you can’t do it is the first step….but the second step has to be realizing our need for dependence on God...and believing with his strength (and asking for help from others when we need it) is what will help us be able to keep going when it feels too hard.

Some days I’m just ready to fast forward... to look back and hopefully understand why this season had to be what it is...and how it hopefully brought us to something good... but then God whispers and says... but today is good... even in the hard.. I’m here and it is good. Pause and (as you constantly tell your two year old) breathe... take a deep breath ...and breathe... “ turn it around” as you say to Jed... I say to you... breathe. For even in this... I am here...don’t miss the good. 

Stop your discontentment, stop your jealousy, stop comparing, stop asking why, stop your fear of the future and stop stressing over what you don’t have, release your anger, your sadness...and embrace your reality. Embrace today... you are not alone. I am here. Your wonderful support system of my people I’ve blessed you with.. is here.

Work through the emotions, don’t ignore them, but work through them and ...keep ...on...moving and keep choosing to “turn it around...into something good” (As Daniel Tiger would say ☺️) .

I meditate on all this as I reflect on Rorys MRI which I saw for the first time this week at our first neurology appointment . My reaction was to be sad...b/c the results honestly are sad...as the NICU doctor initially said “her brain was devastated by the virus” which is true and we should be sad and mad about that...and it’s ok to feel like …what kind of future is this? Why? It feels so unjust to her, to our family, especially to her. But to move forward in hope you must find a way to look at it different..and think..look at what she IS doing..despite that sad MRI. Our neurologist said...he has some patients who will never achieve what Rory already has..she’s breathing and feeding on her own w/o equipment..she cries and can be soothed (sometimes ☺️) which is a good sign.. she kicks her legs and arms and lifts her head.  

 So instead of getting stuck in the sadness about the reality we face, about the broken world we live in, the impacts of how a virus devastated my daughters brain before she was born, I’m trying to turn it around and be glad. She is HERE, she is a gift, and I want to be glad for what she is doing despite what the MRI shows and what that likely means for the future...though we have a good idea of what is likely...it’s not written in stone...The future remains unknown....nothing is for sure and we will do all we can to support her at having her best shot and to keep on fighting.

Hope is one of our greatest tools to keep moving forward. And if the things we hope do not happen this side of heaven..all the more to look forward to the other side..when Gods glory is fully revealed to us..and our daughter then is fully healed and restored. Until then we try to enjoy and appreciate what we do have..today. To be realistic and prepare for our likely outcomes, to not stuff our emotions, but to work through them and yet continue to pray and hope and celebrate the daily little miracles. 

A dream to long for: While I was pregnant I had a dream of Rory and Jed dancing and spinning together in a field of flowers as the golden sun was shinning upon them....She had long wavy blonde hair and they laughed as the twirled and played together. At the time I thought maybe this was a sign from God that he’d fully heal my daughter.. that she’d be born healed... now being told her walking or talking in the future is not in the cards and would be an absolute miracle.... I change my perspective. Though I still pray and hope for that dream to be a reality this side of heaven..(and know God can work miracles like that) I also know... if it does not happen then it must be a vision for what is to come once we are in heaven. Either way it’s a beautiful dream God gave me that I cling to and cherish. I strive, to choose not to be sad or mad (which is hard...sometimes daily) but to be grateful and joyful. So next time I’m sad and struggling to move past the emotion...I ask God and his people to remind me to keep moving forward and to “turn it around to something good” to look at it different. And I hope for you to do the same. 

Thanks: Thank you friends and family for hearing my heart and journeying with us. Writing has always been a healthy mechanism of processing for me and opening up your writing to others can be scary but it also can open the door for encouragement, love and connectedness. We are finding the balance in vulnerability and inviting others on the journey to learn, experience and pray with us and our family. There is a healthy balance and it’s different for everyone.

Prayers: Most importantly thank you for your prayers. We continue to pray for Rorys immediate needs..like this week still praying for her white blood cell count to go up and normalize...for less tears (we think from gas and tummy pain), and good feedings. For her to build the strength and tone to be able to take a bottle, for her viral load to decrease, for her to grow and stay healthy and protected while her immune system remains vulnerable. And we pray for her long term needs/development. That’s she’ll continue to beat the odds. That maybe my dream will be a reality this side of heaven..that she’d one day dance in a field of flowers with her brother laughing …talking…using her legs. We pray for hearing, for sight (not just with her eyes but that her brain can process the images despite the neurological damage) and for all the milestones ahead. Big prayers….praying for the impossible, the unlikely and the everyday little things that can be a big thing for her.

Mostly we pray for peace and for little pain and discomfort for her.....for healing, growth and just a lot of joy and love...for her and for our family. 

“And so we thank the Lord, for giving us the things we need… day by day…. the Lord is good to me” AMEN

Enjoy the family time

These past few weeks I’ve been grateful for the family time we have in this in between season…a few weeks where Andrew and I both are in between work and leave and have time off. I’m SO incredibly grateful Andrew is off and for the help from family. Andrew and Jeds bonding time has been extra special and so grateful to be able to mostly focus on Rory but still get time with my sweet boy.

Even if I feel like the majority of my time is spent feeding or sometimes soothing a crying baby there are all the moments in the day in between , some full of melt downs and setting boundaries for a toddler..but many much sweeter that feel like glimpses of heaven. Time outside , porch swinging, cooking, and playing… jeep rides and ice cream time. A slower pace , enjoying the day and family.…and the fall weather has been the cherry on top!

The days feel long yet short… and time is slipping by.

As for health updates….Rory has made good weight gain! About an ounce a day this past week! Praying that continues..still no bottle feedings - Hoping the swallow study we are waiting on can help with figuring that out. Her white blood cells are still down at critically low so praying for those to improve so we can start her antivirals again. She’s been off them for almost two weeks now-hoping once she’s back on them they are still effective and no harm done from having to start , stop, start.

They also think she may have reflux/colic which makes for some long days…hate seeing her in discomfort but she has been sleeping a lot better at night between feedings so grateful for that.

The next two weeks are pretty packed with doctor appointments. Our weekly Pediatrician,PT,OT and Speech appointments plus a few others we have been waiting on…ENT, optimalogy, cardiology, ID and neurology.

Specific prayers…for the white blood counts to go up, for less crying from stomach/gas pain, for the swallow study we’ve been trying to get to be expedited, for good outcomes with our first neurology appointment (still praying for miracles over her little brain-that it would develop and grow in ways that amaze the doctors…giving her opportunity for optimal function) for her spleen and liver to continue to heal and for her vision. Rory passed her vision test in the hospital from an eye perspective but we aren’t sure about the part of her brain that processes images/vision. She’s showing some signs of CVI ( cortical visual impairment) from my observation she tends to only respond visually to sounds. It could be still delayed development (what mamas praying for) but not sure. Time and doctors will tell-until then praying for the best.

We continue to pray and hope and plead for health and little and big miracles. And to enjoy the little moments, fall time, sunshine, a sweet toddler, baby snuggles, coffee, cider and porch rocking and so much more.

Thank you for continuing to pray with us. We believe Rory is here with us today because of prayer and Gods grace and his bigger than we understand plan. So we continue to pray and hope and trust as best we can.

In a boat in the middle of a lake…

Fall time pushes us into a season of gratitude with holidays like Thanksgiving and Christmas... though I know we really should be thankful year round, day round, every hour...this season in particular brings about reflecting on gratitude. 

If I’m honest my emotions have been up and down.. I cry a lot out of nowhere these days...( I blame the hormones still ;) and the trauma of what we’ve been through) it’s easy to let your mind go to hard places... but Andrew reminds me all the wonderful things we have to be grateful for and celebrate now. It’s easy to focus on what we don’t have or don’t think we’ll have in the future. I sometimes get sad thinking about “normal things” Rory may not have...it’s so silly, like the other day I heard a song that made me think about our marriage and love story and I began to weep..thinking “Rory may never have an opportunity to know love like Andrew and I have” and I grieved...but the truth is we don’t know that... we know what they tell us is likely for her future capability wise but it’s not yet written. So we continue to pray and fight for her..and even if everything they say is true... that’s ok too...b/c she will have our love, her families love and most importantly the heavenly fathers love. The greatest love of all. I’m reminded to focus on all the good we have and not what we don’t have or think we may never have. Because life may actually be sweeter without those things anyway..God has a good plan for Rory and her story as he does for each of us. We all really do have so much to be grateful for. Practicing gratitude brings life and joy.

On that note....How’s our girl doing? She finally hit 7 lbs! Woohoo! Weight gain is still slow but she’s gaining. Still not really taking a bottle... so not getting that mct oil formula they want her to get but she’s gaining so we’ll take it. Rorys liver enzymes went down, though still enlarged, they appear to be going in the right direction. The new update for prayer is her white blood count is very low, the antivirals to fight the infection work against her WBC ...so prayers for her WBC and for health as she’s high risk for infection with low WBC. Thus all the more importance for us to be so cautious with her health and exposure. Keeping it low key and other than doctor visits little girl mostly stays home. The season for outings and adventures and meeting loved ones will come one day (for all of us in this quarantine life we are living) but for now we enjoy home and family time. Which excited to share some family photos we recently got to remember this time with our itty bitty warrior and celebrate her life and our family of 4. Thanks to our friend Caleb for capturing these great shots for our family!

I’ll end with sharing a word that encouraged me  from the morning devotional I’m currently reading about trusting God in the storms ....

“Trust is not giving up; trust is opening up. Opening our hearts to the possibility that maybe God really does know best. Maybe his wisdom and care and love are what we need most. And so, reluctantly at first, we open our hearts to trust in the middle of what we don’t always like or understand. But we open our hearts to a Father who has our best interests in mind, even if we can’t fully comprehend it. . . .The struggle to trust and obey is real. But it’s also a necessary step toward growth and transformation. Learning to trust God with what we don’t know is essential for being filled with God. If we are to increasingly experience the good life of following Jesus, we have to learn to trust like he did, often with what we can’t see or get our minds around.” - from the Bible app devotional..’In a boat in the middle of a lake: trusting the God who meets us in our storm’

I smell fall…

In the mornings the air is crisp, and the leaves will soon change…bring on fall time!

It’s been a gift to have our sweet girl home but we also are still adjusting and catching our breath.

Family update: We’ve had a desire for a while to be closer to family and to have more space for Jed to run and play outside our small city yard, to be closer to some of his cousins. With all that has happened we feel this is where God has been and continues to guide us….now is the time for us to walk in that direction.

So this past week we moved closer to family north of Atlanta. There are aspects we are excited about with this change and others we are sad to leave, but ultimately feel at peace with the change as part of Gods plan for us. So we’ve been a little busy to say the least...adjusting to this baby girls schedule and needs and packing and moving. Jeds been a champ, we know it’s all been a lot for him…..and we continue to pray for him in this transition too. It’s A LOT! It’s been A LOT ….since March....and that’s why I keep saying “Bring on fall time” my favorite time of year! I’m ready for it! For the pumpkin bread and lattes, cool weather, leaves changing , and all the holidays that bring family together! We are so grateful for the support and time with our family. I’m not sure we’d survive this season we are in without them.

Rory’s Health: Aurora has slowly been gaining weight ..about a 1/2 ounce a day....praise God! But it’s so hard not to worry over all the little  things. She’s almost two months old now …and just creeping up on Jeds birth weight 6 lb 11 ounces. Our itty bitty warrior!

She does so well nursing but has a hard time with the bottle now that she can nurse..she mostly screams and spits up bottle feeds…but the doctors want her to take a bottle for roughly half her feedings to get nutrients from the added special formula both for weight gain and for her liver repair. Prayers we can figure out how to get this girl to do better with some bottle/formula feeds! And for mama to not get so stressed out over it! Ultimately ….she is gaining weight! so she’s growing! 

Also praying for Auroras liver and spleen, both are still very enlarged and healing. We had our first CHOA (Childrens Healthcare of Atlanta) out patient visit with a few of the specialist we’ll be seeing for her, we were there ALL day... but it was a great experience. Great staff and doctors and beautiful building. The overall customer/patient experience once there (scheduling our initial visits was another story ;) was a really good experience. And my marketing/brand brain was reminded how much customer experience and putting the customer/patient needs first (even in building design and process, and training staff) is so important and makes all the difference. Especially when in such a high stress situation (I.e. having a newborn with health concerns in a pandemic..) One visit to CHOA and I’m already think I’m going to be a raving fan...which is good b/c we’ll be there a lot. 

I also was very encouraged by what Rorys hepatologist said. Even though Rorys liver is not great now...the doctor said “ she’s doing great mom, after reading her 16 page discharge of her history and conditions-I was not expecting to see this at all today….(pointing at Rory) all things considering she’s doing really good” my eyes started to fill with tears. Praise God! Our little girl is thriving the best she can! When reading her “file” I think most doctors expect a “vegetable” baby, hooked up to lots of things, especially with her MRI findings/diagnosis ....and we know she may never be “normal” but she is surpassing the expectations put on her and we are so proud of her. Thanks be to God! We keep praying for miracles for her! Big and small as she develops.

Prayer support: Transition for all of us and Jed! For Rorys liver, spleen, weight gain and ongoing for her brain growth and development. We don’t see the neurologist until October..so continue just to pray over her precious little head and brain! And prayers for the next blood draw we have to do this week. They have a lot of labs they need to do on her and couldn’t get enough blood this week. Her veins are too bruised and tired. So they will try again next week. (Prayers for mom during that part too! blood draw on a new born is hard…But mostly prayers for Rory…for no pain…and good flowing veins for the blood work they need).

Friends/Family- thank you again for continued love, support and prayers for our family and our precious Rory Rose ! We still feel so cared for and loved and hope we can pay forward all the outpouring of love we have and continue to receive.

Home at last…

Our little girl is home at last! It was very unexpected to us. Over the weekend the NICU team said as soon as we got her medications filled we could bring Aurora home!

She came home to us , no oxygen, no feeding tube…just a sleepy sweet little baby!

Piedmont was nice but I did the math and I was there nearly 100 times since March …so glad to be home and hopefully not visiting Piedmont hospital for awhile.

We have many specialist outpatient appointments in our future…but if girl can put on and keep on some weight we can stay and be home together.

Feedings are a little challenging… prayers they get easier and that Aurora continues to gain weight and get the nutrients she needs to grow.

Adjusting to less sleep…but its so nice to be home together as a family! And Jedidiah is the sweetest big brother.

Thank you for prayers for Aurora and our family in this stressful hard season. We continue to pray for Aurora’s development as we know she is a non-typical developing baby with many challenges ahead. But we are grateful for her life, the joy she brings us just by being here and fighting and really doing amazing considering her challenges. I’ll be honest, it’s been hard and emotional (and likely will continue to be) but we are grateful for all that she has and will teach us and grow us! And right now grateful for her sweet sleepy baby snuggles. And the goodness we get to see in Jeds heart as he interacts as a big brother. Family is a blessing and a gift…..seeing that more now than ever.

So much hard but so much good and I know growth will come from all of it! grateful our Rory Rose is home and our family is together.

Thank you for text and emails of encouragement..I’ve been extra slow to respond and update lately as little girl is home, adjusting to our new norm..so thanks for grace if you’ve reached out and I’ve been slow to respond . So grateful for so much love prayers and encouragement for Rory and our family!

Pretty little face …

“Praise God from whom all blessings flow”… Grateful for Aurora’s progress. This week’s been big. Aurora was taken off the nasal cannula and so far has been doing good breathing on her own! She also got her feeding tube out…more like she ripped it out herself..haha (a very common Aurora move….girl’s been constantly pulling out feeding and breathing tubes since she’s had them…strong little grip/ confident little girl..saying.. "‘I got this…no tubes needed here’)…and then she kept taking her bottles so they didn’t have to put the feeding tube back in! AND we’ve even been able to allow Aurora to nurse once a day over the past few days. She mostly does bottles because of the added nutrients she needs to gain weight. She is slow at the bottles and needs some support but is doing it!

God willing if her progress continues we may get to take her home in a week or two! She just needs to continue to stay stable with her breathing, keep finishing her bottles , and start gaining some more weight! Right at 6 lbs now…hoping she can put on and keep on a few more!

She is 6 weeks today! We celebrate her progress, knowing the journey ahead is still long and full of hills, we are so grateful for where we are..and are longing to have our whole family together, to not be saying goodbye to one child to go see and be with the other!

Grateful for hopefully this sweet angel, with this pretty little face, being able to come home to us soon! We continue to wait and pray, and do our best to try living enjoying the little moments day by day. We often feel tired and worn down from the long days, but try to focus on our gratefulness and encourage and lift each other up. Its a beautiful reminder how we (any of us as humans) CAN’T (or were not intended) to do it on our own. We need Jesus and we need each other. His strength and the gift and care of community and relationships are what we all need and what we were created for.

A determined little girl…

It’s been a great week! Rory continues to make positive progress. Her breathing continues to improve …she was moved to 2 on the nasal cannula which meant...she met criteria to move to intermediate care! So….over the weekend she transferred from the NICU to intermediate!! She now has her own room and we no longer have the challenge of coordinating our visits with neighboring parents. We still can only visit for 4 hours within specific time slots, but any time slot is always available which is so nice logistically for coordinating our visits with making sure Jedidiah is taken care of. We feel like we (she) graduated in so many ways :) Back to school and moving on up to the next grade.

Then the big update, Rory drank milk from a bottle!! Only a little bit…and has a lot of practice and learning to go…but still a big deal. One doctor initially told us, because of her MRI results it may not be very likely Rory would have what it takes to coordinate sucking, swallowing and breathing all at once to take a bottle, but that they’d give her a shot at it. Little miss continues to do more than what is expected of her and we are grateful and praise God. She’s still is doing a hybrid of tube feedings and bottle feeds and probably will for a little while (the nurse compared it to running a marathon…taking a bottle after eating out of a tube for a month is exhausting for newbie NICU babes, so it will take time and practice). They said Rory is determined and seems to really like the bottle (her first time to taste food...I would imagine its better than just getting a full stomach with no taste). I will say though she sure does hate burping after drinking from a bottle…(she cried LOUD the whole time..haha)…but what baby doesn’t!? New experiences…fun and not so fun for little girl. Lots to practice and learn..but so grateful for the progress.

We are SO proud of her, and so grateful for God hearing our request and our prayer. We will continue to pray every step of the way for every milestone that we know will be a hurdle for her. Knowing she may not hit them all, but not doubting what God and Rory can do. We must believe in our children and what they are capable of, as well as not doubting God, even when it feels so dark… (preaching to the choir here as doubt and fear so easily comes…I must constantly be reminded to not fear and not worry!) … he can make anything possible. And he has a plan regardless of the outcome…not that he causes the bad dark things, but he can redeem them, and he does want good for us!

This whole experience has made me realize how much more I need to pray. Need it like the air I breathe, (honestly at moments when I feel I can’t breathe because I feel overwhelmed by where we are - prayer always seems to help). And we must pray, not just for Rory because her needs are so great and hit us so stark in the face, but also for Jedidiah, for request for his future and for so so many praises for all the good things he has and is capable of! Nothing is promised and guaranteed, every function is a gift!

I’ve noticed I call out to God in prayer with my request so much more than I do my praise and my thankfulness. Trying to remember to call out in gratitude and celebration of the answered prayers and the little things we take for granted as much as I do the request! . 

And when we are angry - God can take that too, he can handle our anger and our sadness….but often times its the prayers of gratefulness that help us the most…our prayers for gratitude give us the strength we need to keep moving and the joy we so desperately seek.

With Rory now drinking from a bottle this song has been on my mind a lot and I sing it to her while snuggle. So proud of her “feasting” and grateful for a promised day of feasting together with all restored and no more tears!

we will feast song by Sandra McCracken

“We will feast in the house of Zion
We will sing with our hearts restored
He has done great things, we will say together
We will feast and weep no more“

All about the head rubs…

Aurora has been making positive strides in her breathing! So much progress that this past weekend she got a mask upgrade (or downgrade shall I say). She no longer is on CPAP but on a nasal cannula. We get to see her cute tiny head and face . And she seems so happy and so much more alert now with the change. You can tell it’s so much more comfortable for her now. 

We’ve learned she LOVES to have her head rubbed...anytime she’s fussy it seems to help...so all the head rubs for this sweet girl, as she dozes off in our arms.

The time goes fast as we visit her each day! We can’t wait for the day we can take her home… whenever that may be...and continue to try to practice patience as hard as it is. 

Her liver seems to be making some small improvements too. We are still praying for her overall health to improve and white blood cells to increase, and for the medicine to keep fighting off the CMV viral infection. And praying for that little head of hers to grow. Though her MRI showed some hard realities that we know we need to be realistic about, we still pray for her brain to make new connections and repair what it can to start growing and to overcome and achieve more than what is expected.

In the near(ish) future they also may attempt to allow her to try and bottle feed-so praying for that too. Continued tube feeding is a likely outcome for her but we still pray and ask for big things. And then respect and move forward with whatever the outcome may be . Trying to continue to focus on what we do have to be grateful for… So much! 

I think initially my mindset was let’s pray for “a” miracle. For her to be here and be healed. What I’m learning is this is going to be more than weeks and months of praying for “a” miracle but years of it...praying for lots of little miracles… continuously turning to God in prayer. Day after day with every new phase, praying ongoing for many little miracles, and many hills to climb, for our miracle girl. Who IS here , when for so long we weren’t even sure if that would be likely. 

Thankful for friends and family caring for us and praying with us! We look forward to the day she can come home and eventually one day meet so many people that love her and have prayed for her with us! 

She’s a gift, reminding us nothing is promised and that we have a future hope better than today…yet today we must live with gratitude for the gifts we do have, not envious of what we don’t....knowing a greater gift and a greater day awaits!

Beauty takes time to blossom

“Don't waste time looking at the thorns or you'll miss the roses.... and know roses do not bloom hurriedly; for beauty, like any masterpiece, takes time to blossom. “

Its been three weeks with our Aurora Rose.. in ways it feels like forever and yet in others it feels like time has frozen and I can’t believe we’ve been here for 3 entire weeks.

A co-worker reached out who had just finished spending 4 months with their little one in the NICU.... he said stay strong! You will get through it!  Right now I don’t feel like I could handle 4 months of this... to be honest I’ve struggled some with the thorns lately . So many unknowns and no way to really plan ahead..Yet I am reminded to take it day by day and to get moving, get back to some normalcy and stay positive. Andrews been strong and help me see and appreciate the need for some routine and normalcy in all this. And to focus on the roses. Like the fun we’ve had at home with our son Jedidiah while we are both on leave, the incredible generosity and graciousness our community has shown us, and the positive progress our Rory Rose continues to make! And celebrating 3 weeks with her. 

Many unknowns and uphill battles ahead of us but today we focus on the hill in front of us. And celebrate the sweet smell of roses blooming. Because she really has been making positive improvements considering! The hill in front of us is her breathing, her belly, her liver and white blood cells. Continued prayers for all these things! She seems to be making good progress needing less pressure and assistance. Still on the CPAP but hoping to move past that real soon with the progress her little strong lungs are making. Our girl is strong!

For now we celebrate 3 weeks. And this beautiful little face of this sweet girl who is our daughter, whom we love to hold and snuggle! Aurora Rose

Staying stable and hopeful…

The past few days have been pretty good. It seems our Aurora Rose is staying stable and headed in the right direction. Her breathing is slowly getting better, they have been able to knock her pressures down some and she no longer is getting added breaths, breathing mostly room air on CPAP…with added pressure and occasional shallow breathing. They say her lungs are small, as they didn’t have a lot of room to develop with all the ascites, but overtime (once the ascites is gone) can expand, grow and get stronger.

The ascites (fluid in her belly) we thought went down a little but hard to tell as each nurse could measure slightly different…but not increasing so that’s good! Continuing to pray for the ascites to resolve and go away!

It’s so nice to see her without so many lines in her, and she’s able to wear clothes now! They have to be clothes that can work with all her NICU gear and they all look huge on her…but still nice…to make things feel a little more normal. 

She LOVES her paci’s and to be swaddled real snug!

It still is likely a long NICU journey ahead of us…but taking one hurdle at a time. We continue to pray for her more immediate needs , like her ascites, her ability to breathe better on her own, her liver to start to get better, and for her little nose to heal...the mask with prongs, irritated her little nostrils, so they switched her to another mask and are trying to let her skin heal. Then we also pray for the less immediate more long term needs….like for her little head and brain to do more than the doctors think it is capable of. For her brain to start making new connections and to find new ways to do all the things they think she may never be able to do based on her MRI findings.

The balance between realistic yet hopeful is hard for me sometimes, so I’m learning it’s best not to fixate on it but to continue to read scripture, to pray, to trust, and to take each day as it comes. To believe in her, and in God with her, to have hope, but also to know whatever happens… we will make it, and we will be there for her, because we already love her SO much, and would do anything for her, to give her what she needs to thrive. Whatever that may look like.

Today what it looks like, is continuing to show up, to hold her, to sing to her, to pray with and for her and to be calm, patient, resilient, and to take it day by day!

What I do know is that I’m grateful for so many people showing up for us, and loving on us when we feel tired and weak, so that we CAN just take things day by day! Gods people are good, and we are very fortunate to get to experience, love, grace, generosity, and kindness like we never have before! Often we love to give and its hard to receive, but we are learning to not feel guilty but to feel grateful and hope we can pay it back or forward one day.

Matthew 6:33-34 “ Seek the kingdom of God above all else, and live righteously, and he will give you everything you need. So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. “

Celebrating the little milestones

 2 weeks! We are thankful our Rory Rose has been with us for 2 weeks now. And the past couple days we have been able to hold her again, which makes the world of difference! Our nights with her in the NICU go by so fast as we rotate time holding her, just letting her sleep in our arms. 

It’s hard to say for sure because every day changes, with new challenges, but I feel like she’s making good progress. She hasn’t had a blood transfusion or platelets in days and they’ve removed so many of the lines from her , really just her “face mask” (as mom likes to call it …a.k.a. CPAP) and feeding tube are left for food and for antivirals, and a few sensors to read body temp , etc. 

The fluid is still in her belly and the doctors did say they are a little concerned with her liver. So prayers for her liver and for the fluid in her belly to start to go away on its own! 

The future can feel overwhelming, not knowing what is going to happen and what it’s going to look like, so we still are trying to take things day by day.

We know the future , whatever the outcome, will likely be hard…but we aren’t scared of hard. We’ve learned in life, most good things aren’t easy. We just hope our future continues to have Rory Rose in it, and that in due time we get to take her home and hold her whenever we want! But for now we are enjoying the snuggles and big eyed stares she gives us on our night visits. 

Every day is new…

We know whatever happens the future likely will be hard but trying to focus on the day to day and enjoy the little things . 

We live for our daily visits with our sweet girl. 

Her little eyes melt us, it’s a gift when she opens them and stares into our eyes. She is beautiful, she is strong, she’s still fighting. And we are cheering her on and in her corner! 

Health hurdles seem to come and go constantly but right now we are specifically praying for the fluid in her abdomen to go away on its own. Each day is a new day, trying to focus on the now and find strength a day at a time.

“And the LORD will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail. “

- Isaiah 58:11