To Everything, There is a Season

Sitting here at Lucy's bedside while she finally finds rest and peace, even though it's through the help of medication, I am reminded of her true and natural beauty.  My Daughter is breathtakingly gorgeous - with her thick, long eye lashes and her golden curls; her perfectly-shaped lips and little dimpled hands.  Lucy turns SIX on September 26th, but there's no party planning taking place right now.  Right now, I'm glued to her side as we try to figure out what's going on inside her little body, and as we are faced with decisions no parent should have to face.

Two weeks ago today, we brought Lucy into the ER for severe tremors, vomiting and constipation.  We were admitted the following day and during the next week, many different tests were done and many different specialty teams have come on board with Lucy's care.  She seemed stable on Sunday, so we were discharged all to be brought back to the ER yesterday with that awful, horrible, constant shaking of her body.  It's hard to explain what it looks like, but it is gut-wrenching, as she can't control her body parts in any way.  She has been in so much pain and tries so hard to suck her thumb (one of her only coping mechanisms), but the shaking is too violent and her body won't let her do that.

To Everything, There is a Season - earlier this summer we welcomed my brother home from Oxford and spent some wonderful, happy times together. My Little Sister got married just two weeks ago.  Family birthdays have come and gone, school activities and the like - a Season of Celebration and happiness!  Now, it seems, that a Season of Mourning is upon us, although I truly wish that were not the case.

Mike and I have been meeting with doctors and talking about the future.  We don't know why Lucy's body is seizing, shaking, etc.  We don't know why her bowels aren't working on their own, and why she isn't absorbing her feeds and medications through her gtube.  Will it change and turn around?  Will this just be a passing phase?  Oh, we surely hope so!  But, the evidence is telling us otherwise.  Lucy's body is tired and she's been in agony - NO parent wants their child to live in agony.

I've posted several video updates from the last weeks, onto my Facebook page, and you are welcome to catch up on more details that way.  For now, we are praying for Lucy to be comforted, pain-free and at peace, whatever that might look like.  While we know so many have the best of intentions by offering us remedies, solutions, vitamins, oils, and more, we are secure in the information and treatments we have at this time.  Thank you for understanding that, what we don't need right now, are remedies to help Lucy.  We just want prayer.

A precious friend has set up a Lotsa Helping Hands Calendar for our family, and the needs posted will change as this journey changes.  If you would like to help or serve, please visit the link below and find a way that will be easy for you and for your family.

Lotsa Helping Hands care calendar


We've had several folks ask us about a "Go Fund Me" page, but that's not where the Lord is leading us at this time. YES, we have medical bills and needs we are asking the Lord to provide for and truthfully, I have no idea how we would pay for what lies ahead (it's all so ridiculously expensive), BUT we know God will provide.  He is with us now and He isn't just going to leave us by the wayside, naked and afraid, without any hope.  If you would like to contribute financially, you may visit the link below.  All donations go solely toward our medical expenses and you will receive a tax write-off for your donation.

Tax-Deductible Donations through Helping Hands Ministries

Thank you for your prayers.  Thank you for your friendship, encouragement and love.  Your acts of kindness and service truly show us God's love and we are forever grateful.

Ryan

A Time for Everything

3 For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.

The Big Catch-Up (and recent pictures!)

In the "Old Days",  you'd see a blog post or Care Page Update every two weeks, sometimes even weekly!  Life goes on and this momma is now older and wiser (and busier), and although I don't post and share as often anymore, we do still so appreciate your support and encouragement in our roller-coaster journey.  Even when we aren't in crisis, knowing we have friends praying for us, loving us, thinking of us - it means more than you know and I don't think you fully understand until you too experience a deep, life-changing crisis of some type. 

Since Christmas, our lives have been super exciting and equally as busy.  Although I've longed to share with you God's goodness, the ups and downs, our prayer requests and heart-cries, there are several reasons why I haven't . . . mainly, we want (and need) to be private as the adoption is still taking place and isn't yet final, although major parts have been (and soon will be) ensured.

There've been other reasons such as the following

(bullet points are my 'thing' so bear with me) . . .

• Henry still being on homebound services, unable to go to school because of his severe separation anxiety coming from PANDAS. 
• PANDAS is causing major bladder issues so laundry is going constantly (seriously, do they sell professional-grade/size washers and dryers, bc if so, we need one!).  It's a full-time job and I'm not good at it.
• As with many families around the Country, we've dealt with sickness and viruses, although thankfully Lucy has been spared and we've avoided hospital stays! 
• I've received a new diagnosis and I'm continuing to learn to live with physical limitations, which I absolutely hate. 
• Conner has been in the throws of junior high, facing the emotional ups and downs while also enjoying close friendships, church youth events and sleep-overs.  We are so proud of him as he has so much to carry on his shoulders.
• Mike has even been sick this winter, which never happens to My Guy.  He's soldiered on and is working harder than ever to provide for us.  I'm thankful he loves his job and loves who he works with too! 
• We've been blessed with new home health nurses and although it takes some adjusting, having new personalities in your home, we are thankful for the help, knowing Lucy is cared for overnight, esp since she's on continuous feeds and has more seizure activity at night.  She loves her new nurses but has missed school bc she likes to stay up ALL NIGHT with the nurse, playing, singing and calling out (which we love to see and hear but she also needs to get back into routine; Little Miss Sass).
• Hope Link, the Foundation we started in honor of Ellie Kate back in 2009, has grown by leaps and bounds and we are enjoying cultivating relationships with new families!  Doing life with families like ours, families with medically fragile children and families who have also buried their babes; it's just something more precious than I can explain.
• My computer has broken a million times and with a shattered screen, I still attempt to use it on a daily basis.  It shuts down multiple times during use and it beyond frustrating.  I will say that being unable to use a computer has brought a new freedom which is great!

Of course, one of the main reasons it's been hard to update is because we are now a family of seven!  We now have FIVE children, one in heaven and four living on earth.  It is WONDERFUL, PERFECT, HAPPY and even PEACEFUL, and that can only be from the Father!!  We are so enjoying our Bowen Jane and she is bringing light and life to deep, broken and dark parts of our hearts.  The Lord is using this Little Girl to awaken us again in many ways and it's so good to FEEL again and to have the JOY that new life can bring. 

Bowen Jane, age 2 weeks

First pic of the gang of four (notice Lucy's not-so-happy face)

We are in LOVE

Since bringing Bowen Jane home on that beautiful, grey Christmas Day, I've learned quite a few things (again with the bullet points - sorry) . . .

• Having a baby at (almost) 39 is SO much different than having a baby at 25 (and I didn't physically give birth)!
• I'm older and wiser as a momma, purposefully trying to treasure each and every moment, every smile, every coo, every cuddle while also seeking advice from fellow adoptive mommies.
• Mike and I are continually reminded (as in, every few moments of the day) just how precious and miraculous life truly is! A "healthy" baby is miraculous and we do NOT take it for granted.
• Big age gaps in siblings isn't a negative but rather a gift.  I love watching Conner esp holding and kissing Bow and Henry comforting her and singing to her each day.  It's just the beginning of their relationships too - happy tears fill my eyes when I think about the precious things the boys get to experience with this little girl in the future!  They are already stunned at everything she can do - her purposeful movements, the way she can look them in the eye, the way she eats her bottle - all things their other Sissy's just weren't able to do.  I am in awe of this Gift!! 
• Life should be simplified and we're working on doing just that - it's beautiful and brings peace; we hope it's something the boys will carry on with them always.
• Our red handi-van is now officially TOO small for us!  Although God DID give it to us when we also had four children in our home, the boys are much bigger (Conner is taller and heavier than me!) and don't show signs of stopping. We've had this grand vehicle for around six years and God literally brought it to our door!  He alone provided for us before, and He will provide our next vehicle as well. 
• Rooming with a baby is heaven on earth for me!  Since we don't have a bedroom for Bowen Jane, she will be in with me and Mike which is something now recommended (babies rooming with parents for the first year at least).  The tight room has inspired us to simplify even more:)
• Lucy has taken on the role of Big Sister and she's doing a great job.  My fears have fallen to the wayside and although she still sometimes turns her head from me and Bowen, occasionally refusing to kiss the baby or her momma, she is GENTLE and soft when she does touch and kiss her Baby Sister, just like Ellie Kate did with her. 
• All of a sudden, Lucy is no longer a baby.  She's a little girl and reminds us more and more of Ellie Kate each day.  Some of her baby-happiness and joy seems to be gone, which breaks my heart and I wonder where it has gone.  She sits deep in thought although she still busts out with deep giggles when we least expect it.  This seems to have happened overnight or maybe it's bc I treated Lucy like a little baby for so long - really, up until Bowen came home.  She's wanted to be a big girl and now she is but there is a twing of pain and heartache that comes with knowing she's growing up as well as fear of the unknown for her health and her future.
• It feels SO good to have FOUR children in our home, in our vehicle, in our bed, in our arms again. 
• She's still gone.  Even though we have four babies again in our home again, our Consecrated Princess is STILL missing.  Ellie Kate will always be missing and our hearts will always ache for her, long for her and we will always notice the hole her presence has left here on earth. 

Lucy, age five

Ellie Kate, age 7

Life changes so quickly, TOO quickly, as so many of you already know.  It's a beautiful, precious gift we've ALL been given, so I encourage you to drink in each moment.  Savor it.  Bathe in it.  Stop surviving and enjoy life; make the changes you need in order to do just that.  Simplify and teach your children to do the same.  Love each other and your family well.  Serve one another and those in your community - you will never regret giving yourself away to your "people", your tribe, your family, your community in which God has placed you. 

Thank you for allowing me to share our life journeys with you.  Thank you for continuing to come back and check on us, loving us so well.  Mike and I look forward to updating you SOON with photos and stories of God's faithfulness throughout Bowen Jane's journey into our family!