Warning: This is NOT a happy post, but a post to make you think and dig deep. It's a true picture of my heart, and I'm afraid it's not pretty, but rather a very messy place at this time. I promise that there is a lesson to be learned, and I assure you it comes straight from the depths of my heart.
I consider myself a "feeler"; I feel as though I am in tune with other's people's emotions and needs, even though I readily admit that I don't always follow through in loving other the way God wants me to. I am a "Mercy" person, and my heart often hurts too much for others (although I'd choose this as a fault over others for sure!). I hurt for people and I long for people to understand me and for me to understand other people.
But, what do you do (as a 'Feeler/Mercy') when your heart and your head are so mixed up that nothing makes sense? You see, I've learned that stress and grief and loss take a toll on your body. I mean, they really and truly take a toll on your body. David wasn't kidding when he spoke in the Psalms about his heart and body failing him. My heart, my body, my emotions are failing me.
For example, since Ellie's death, I have had something called Grief Eye. It's a true condition that stems from your eyes producing too many tears. It causes blurry vision and sometimes even pain in your eyes. I've had GI issues that have inflamed, and I often can't keep food down or in my body. My migraines (which I've always had) have flared to an all-time high. And my heart - well, I have severe heart palpitations and I also have been diagnosed with Hypertension (in my case, extreme high blood pressure). All of these things are because of grief. Did you know that your mind is even affected by grief? Your seratonin levels can get incredibly low; so low, that you don't understand or see the world clearly. It's not just depression. It affects the entire body, including the mind. That's how God created us. When our heart, spirit and soul are violently broken, our body responds in crazy and amazing and often devastating ways.
Hang in with me, Friends because there IS a lesson in all of this sharing of my heart. Just keep reading . . .
I had no idea how this Thanksgiving would affect me. We packed for a little family trip, and as I got out the gloves and hats, I saw Ellie's things right there with the rest of them. Oh, that sweet little hat that I had saved for Christmas last year (Hello Kitty). Why didn't I give her that little hat early? And those sweet little gloves that never stayed on her busy hands. Her coats still hang in the coat closet. I bought her a new one last year because she had grown so much. I wish she had been able to wear it more. I didn't know. We didn't know that last year would be Ellie Kate's last Thanksgiving on earth. The boys say it was the best Thanksgiving ever, and in many ways I would agree. I just wish I hadn't taken it for granted.
And as we drove to our destination several hours away, I cried almost the entire time. I cried that Ellie wasn't with us. I cried that she wouldn't get to see or play with her cousins. I cried that she wouldn't get to experience our time together surrounded by the beauty of God's creation.
During our short time away, I cried that she wasn't there. I cried in gratefulness when our family brought up her name. I took some walks, and I took a drive (which my close family will tell you is the way I deal with things when I need to get away, as I no longer can 'work out' or run it out because of my heart issues). I let my emotions get the best of me.
It just all became truly REAL. You see, God blessed us with something very bittersweet. In less than a month's time, we will celebrate and remember many things. We will celebrate Ellie Kate's birthday. We will remember that last hospital stay. We will remember the day we met with her precious doctors as we made those terribly hard decisions that no parent should have to make (not a dry eye in the room, mind you). We will remember the incredibly precious moment when all of Ellie's beloved nurses came out and cheered for her as we left the hospital one last time. We will remember the day we brought EK home on hospice. We will celebrate my sister's birthday - the very day that we will celebrate Ellie Kate meeting Jesus face to face (He was REALLY excited to welcome her home, but that's another story). We will remember them coming and wrapping her blue, lifeless body in a cold white sheet, carrying her out of the house and loading her in the vehicle. We will remember them driving our girl away from our house for the last time. We will remember the funeral preparations, the burial preparations, and even seeing her one last time at the viewing. And then there is Christmas Eve, then Christmas, then the day of Ellie Kate's Celebration of Life, then the day of the private burial. All of this in less than a month. Oh Lord, help me to accept your ways and to see your goodness in what seems so harsh!
Finally, getting to the lesson in all of this and not just the bleeding of my heart; thank you for hanging on . . .
I do not in any way share all of these things for you to feel sorry for me or for my family. With all of my heart, with all of my being, I desire for good to come from our sufferings. I desire for the world, particularly the Church as a whole, to learn to love, serve and better understand those who are truly at the bottom; those like me, who sometimes can barely find their next breath because of the pain of this life.
Right now; right in this VERY moment, think about those people around you who are hurting because of a loved one lost or because of a tragic situation; maybe that person who has been hurt so deeply by words that have been said and can't be taken back. Think of that person you run into is undergoing chemo, and is desperately wondering how they will make it through. Maybe it's the wife that's been abused or abandoned, or the tragedy that comes from tornadoes, fires, and other major life events. ALL heartache can affect your body and your soul and your spirit, but the most hurt is experienced in those who have been hurt so badly that they can't see straight.
Think about that person and GO LOVE THEM WELL. I promise you, recognizing it and saying something is better than not saying anything at all. REACH OUT and serve them by offering a meal or offering to babysit, clean their house, wrap their Christmas gifts. I'm NOT asking you to do this for us, as we are surrounded by many friends and strangers who love us well. I'm asking you to reach out to that person in your life that isn't loved well; maybe YOU haven't loved them well on purpose or out of fear. Get over that fear and love well. Do it for yourself. Do it for us. Do it in Ellie Kate's memory. Do it because God calls us to STOP what we are doing and "mourn with those who mourn, and weep with those who weep".
BOTTOM LINE: Grief and hurt run deeper than anything you could ever imagine. They affect your mind, body, soul and spirit. Use our life, use Ellie's life, as an example (or even as an epiphany or reason) to go and love well.
Desiring to See More Reckless Love,
Ryan
Friday, November 29, 2013
Monday, November 25, 2013
The Book Drive Is Coming to An End!
That's right folks, the book drive for Ellie Kate's Month of Reckless love, is coming to an end! We will be delivering and distributing the books NEXT Wednesday, December 4th. This is the last week for you to hit up the drop boxes around town! You also still have time to make some Amazon Wish List orders. All drop boxes will be collected by the end of this week, so this is your last chance!
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Here are the links you need in order to help with the book drive . . .
Ellie's Amazon Wish List
DROP OFF BOXES:
Funky Monkey - 1401 North May Avenue, OKC
Bridgeway Church - 228 West Hefner Road, OKC
Chesapeake Energy - 1600 N. Western, OKC - located in Mike's office; call/text if you'd like to drop off (405-812-3589)
Uptown Kids - 5840 North Classen Blvd #3 (Classen Curve), OKC
Dr. Willoughby, DDS, -1222 S Kelly Ave, Edmond
Keller Williams Norman - 905 24th Avenue NW #A, Norman
Van's Pig Stand, Norman - 320 North Porter Ave, Norman
First Baptist Church, Moore - 301 NE 27th Street, Moore
To The Nines Boutique - 111 West Main St., Moore (Old Towne)
McBride Orthopedic Hospital - 9600 Broadway Extension, Edmond
Each book and toy will be marked with a bookplate that looks like this, thanks to my sweet and talented friend, Katee Bailey. We want each and every child who receives a gift on Wednesday, to know Ellie Kate's story and to be inspired by her legacy. As her mother, this is a way for Ellie to live on . . .
Aren't they lovely?! And below are the precious flyers that will be around the hospital, inviting children and families to Ellie's Birthday Celebration. I am blown away by Katee's willingness to help and serve us with her talents! Truly, the sweetest thing.
As you know, there are MANY ways to participate in this month of Reckless Love, and there are MANY ways to honor Miss Ellie Kate this December. The book drive is just the beginning! So, if you aren't able to help with this part of the Celebration, don't worry - there were be many more ways you can love in Ellie's memory.
Celebration Details:
The Birthday Celebration will be in the "End Zone" at OU Children's Hospital on December 4th from 3:30-6pm. It will be a come-and-go event for the families who are inpatient. We want our dear friends to be there to celebrate and to help with crafts, passing out goodies, handing out gifts, etc. With that in mind, we cannot have too many folks there, as we want the focus to be on the patients. If you are interested or feel called to take part in the party, please feel free to email me at tullyryan@hotmail.com. I'd love to hear from you!
Also, our little family will be delivering books and gifts door-to-door after the Celebration there at the hospital. We would like the time on the floor to be just our family, including grandparents. It will be special for us and we will be emotional. Also, it's "sick" season and there is pneumonia, flu, RSV, and many other things on the floor, and it's overall best to just keep it as a few limited people. Thank you for understanding and respecting this decision.
I can't tell you how blessed I am to see so many of you participating already in Ellie's Month of Reckless Love. It moves me beyond words, and I just cannot wait to kick of the Celebration next Wednesday!!
Friday, November 22, 2013
A Very Scary Day
Today was a very scary day. Today, I saw the color leave Lucy's face as it turned blue during an intense seizure. Today has been taxing on all levels, and I am forever grateful for the messages, emails, texts, phone calls, and prayers you have sent on our behalf.
Lucy has been dealing with a bad ear infection, as some of you know. Ear infections are a big deal for Lucy and she's been hospitalized several times for this very thing. They are hard to treat in her, and because of NKH, she doesn't respond well to antibiotics. Lucy's been on an antibiotic since Monday. She's now received three rocefin shots (an additional antibiotic). This would knock out most anything in a "typical" kiddo, however NKH can make the smallest thing become life-threatening, as we have seen in Lucy and in Ellie Kate. In fact, last year at this time, Lucy Belle was hospitalized next door to her Big Sissy because of a nasty ear infection.
Last night Lu Lu was crying in pain from her little ears. This morning she was a bit lethargic, so I gave her pediatrician a call. Our very wise and kind doctor encouraged me to take Lucy in to be seen once again before the weekend and before the bad weather hit. Our plan was to pick Henry up from school and take both kids to the clinic (Henry needed to be seen again for his asthma).
Nurse Mindy buckled Lucy into her seat and we anxiously waited for the car to warm up, as it was starting to sleet outside. I looked back and saw that Lucy was having a seizure. This one was different and she was stiff all over. Mindy hopped out to check on her, and I hopped in the back to assess Lu Lu myself. I realized that her eyes were rolled back into her head and she was completely stiff. Mindy raced inside to get our pulse-oxymeter and I lifted up her shirt to see if she was breathing. She wasn't. I don't know why, but I put my mouth over her mouth and her nose, as if I were doing some sort of CPR. I kept thinking, "It won't hurt her if I breathe into her mouth. It can only help. It won't hurt". I was frozen and that's all I could do.
Mindy got back to the car, unable to find the misplaced pulse-ox, and immediately undid Lucy's car seat, picked her up and ran her inside the house. I fumbled to find my phone and called 911. By the time I got inside, still on the phone, Lucy still wasn't breathing and was getting more and more blue, eyes still rolled back. I was scared. I wasn't ready to see see my Baby Girl pass away. I wasn't ready to see her on a ventilator. But, I didn't have much time to think. I tried to call Mike but instead had to text him. How terrified he must have been.
Within just moments the firemen were there. How reassuring these sweet men were! Strong and strapping and calm - just what me, Mindy and now Henry needed! They watched Lucy intently and Mindy told them about Ellie Kate. They were so tender-hearted and even joked with Henry, asking him to get them some snacks. Instead of being scared, I think Henry enjoyed seeing the firemen in his house. He even gave Lucy a kiss when they had the oxygen mask on her, and by that time she had woken up out of her seizure.
We decided to have Lucy taken to OU Children's Hospital since we've never seen a seizure like this before. Would it happen again? Is there something bigger going on causing this? It was sleeting as we rode in the ambulance, so the ride there was quite slow. I knew a dear friend and fellow Hope Link momma was also in the ER with her daughter, and another Hope Link momma was there for an appointment. Knowing that I had some friends right there meant the world to me. And I did yell at Heather (Kelsey's mom), as we ran by her room upon arrival. How good God is to do special things like that!
By the time we got to our room, Lucy was back to baseline and was her happy self. We talked to the docs and agreed to be admitted. Blood work and tests were done (although we don't yet have results), and Lucy was a trooper. My Sweet Husband was there with a Dr. Pepper in hand for me as I arrived, as well as a big hug (Oh, how I love that man!). Everyone took a big sigh of relief that Lucy was stable and her vitals were strong.
Mike and I then realized that we hadn't packed any of Lucy's meds or formula with us. We talked to the doctor because we knew some of those things aren't always kept on hand at the hospital (especially the non-FDA approved drugs and formulary meds). We wanted to make sure the plans would start being made to get those meds and that formula ready for Lucy. But, that couldn't happen. By that time it was a skeleton crew and non-necessary folks at the hospital had been sent home. No one could get the formula and no one could make the meds we needed. So, we came up with plan B.
Plan B meant that we could go home, and that is where we are tonight! We will have 24-hour nursing care until Monday so that Lucy is constantly watched. We of course can give her formula and meds. She's received as many shots of antibiotics as possible. If anything happens or changes, we will go back and be admitted upon arrival; but for now, we get to stay home!
I know I didn't have to go into detail on the stories from today, and I may have even bored some of you with the length of this post. I just feel as though many of you are family who have followed us this entire journey. Many of your hearts are knit with ours - especially this time of year, especially in light of Ellie Kate's passing, especially with the upcoming Month of Reckless Love. I like sharing many details with you because of that, and it is also healing to my heart to have it all written down.
Please continue to pray for Lucy Belle. She's had several of her strange and new seizures since we've been home this evening, although she hasn't once stopped breathing. We trust our nurses and we know the Lord and His angels are watching over her. Still, it's hard not to be too hyper-vigilant with our Baby, especially with . . . well, with everything going on right now. We covet your prayers.
May you be richly blessed for praying for us and encouraging us, Dear Friends.
Lucy has been dealing with a bad ear infection, as some of you know. Ear infections are a big deal for Lucy and she's been hospitalized several times for this very thing. They are hard to treat in her, and because of NKH, she doesn't respond well to antibiotics. Lucy's been on an antibiotic since Monday. She's now received three rocefin shots (an additional antibiotic). This would knock out most anything in a "typical" kiddo, however NKH can make the smallest thing become life-threatening, as we have seen in Lucy and in Ellie Kate. In fact, last year at this time, Lucy Belle was hospitalized next door to her Big Sissy because of a nasty ear infection.
Last night Lu Lu was crying in pain from her little ears. This morning she was a bit lethargic, so I gave her pediatrician a call. Our very wise and kind doctor encouraged me to take Lucy in to be seen once again before the weekend and before the bad weather hit. Our plan was to pick Henry up from school and take both kids to the clinic (Henry needed to be seen again for his asthma).
Nurse Mindy buckled Lucy into her seat and we anxiously waited for the car to warm up, as it was starting to sleet outside. I looked back and saw that Lucy was having a seizure. This one was different and she was stiff all over. Mindy hopped out to check on her, and I hopped in the back to assess Lu Lu myself. I realized that her eyes were rolled back into her head and she was completely stiff. Mindy raced inside to get our pulse-oxymeter and I lifted up her shirt to see if she was breathing. She wasn't. I don't know why, but I put my mouth over her mouth and her nose, as if I were doing some sort of CPR. I kept thinking, "It won't hurt her if I breathe into her mouth. It can only help. It won't hurt". I was frozen and that's all I could do.
Mindy got back to the car, unable to find the misplaced pulse-ox, and immediately undid Lucy's car seat, picked her up and ran her inside the house. I fumbled to find my phone and called 911. By the time I got inside, still on the phone, Lucy still wasn't breathing and was getting more and more blue, eyes still rolled back. I was scared. I wasn't ready to see see my Baby Girl pass away. I wasn't ready to see her on a ventilator. But, I didn't have much time to think. I tried to call Mike but instead had to text him. How terrified he must have been.
Within just moments the firemen were there. How reassuring these sweet men were! Strong and strapping and calm - just what me, Mindy and now Henry needed! They watched Lucy intently and Mindy told them about Ellie Kate. They were so tender-hearted and even joked with Henry, asking him to get them some snacks. Instead of being scared, I think Henry enjoyed seeing the firemen in his house. He even gave Lucy a kiss when they had the oxygen mask on her, and by that time she had woken up out of her seizure.
We decided to have Lucy taken to OU Children's Hospital since we've never seen a seizure like this before. Would it happen again? Is there something bigger going on causing this? It was sleeting as we rode in the ambulance, so the ride there was quite slow. I knew a dear friend and fellow Hope Link momma was also in the ER with her daughter, and another Hope Link momma was there for an appointment. Knowing that I had some friends right there meant the world to me. And I did yell at Heather (Kelsey's mom), as we ran by her room upon arrival. How good God is to do special things like that!
By the time we got to our room, Lucy was back to baseline and was her happy self. We talked to the docs and agreed to be admitted. Blood work and tests were done (although we don't yet have results), and Lucy was a trooper. My Sweet Husband was there with a Dr. Pepper in hand for me as I arrived, as well as a big hug (Oh, how I love that man!). Everyone took a big sigh of relief that Lucy was stable and her vitals were strong.
Mike and I then realized that we hadn't packed any of Lucy's meds or formula with us. We talked to the doctor because we knew some of those things aren't always kept on hand at the hospital (especially the non-FDA approved drugs and formulary meds). We wanted to make sure the plans would start being made to get those meds and that formula ready for Lucy. But, that couldn't happen. By that time it was a skeleton crew and non-necessary folks at the hospital had been sent home. No one could get the formula and no one could make the meds we needed. So, we came up with plan B.
Plan B meant that we could go home, and that is where we are tonight! We will have 24-hour nursing care until Monday so that Lucy is constantly watched. We of course can give her formula and meds. She's received as many shots of antibiotics as possible. If anything happens or changes, we will go back and be admitted upon arrival; but for now, we get to stay home!
I know I didn't have to go into detail on the stories from today, and I may have even bored some of you with the length of this post. I just feel as though many of you are family who have followed us this entire journey. Many of your hearts are knit with ours - especially this time of year, especially in light of Ellie Kate's passing, especially with the upcoming Month of Reckless Love. I like sharing many details with you because of that, and it is also healing to my heart to have it all written down.
Please continue to pray for Lucy Belle. She's had several of her strange and new seizures since we've been home this evening, although she hasn't once stopped breathing. We trust our nurses and we know the Lord and His angels are watching over her. Still, it's hard not to be too hyper-vigilant with our Baby, especially with . . . well, with everything going on right now. We covet your prayers.
May you be richly blessed for praying for us and encouraging us, Dear Friends.
Thursday, November 21, 2013
Same Post - Just a Bit Updated!
Ellie Kate's tree is up at our house. Isn't it beautiful? I just know that she would love it! It's sparkling and has pink and purple and glitter. Ellie Kate would just hop on over to that tree and "pat pat" and pull at it.
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It has a few tiaras on it, and a few ballerinas (in honor of our 'Tiny Dancer'). It even has a few special ornaments, like one we made at her fifth birthday party and a precious one from her friend Annie. And the tree-topper is the Santa hat she wore each Christmas (with sequins, of course). And the tree skirt is one of her baby blankets (Mike's perfect idea!). I hope to add to the tree each year, with precious ornaments and memories. As our little family decorated the tree this week, we each hung an ornament and shared a memory of Ellie Kate. It was just so precious. In the midst of tragedy, a new tradition has been born.
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Really and truly, I cannot believe that it's almost been a year. She just hopped over to that new Christmas tree. She just pulled at it and patted it for the first and last time with her weak, tired, thin little body. She could barely see at that point, but she could tell the tree was there and that it was shining. Ellie Kate loved shiny things here on earth, and I am just sure she is surrounded with many-a-shiny-thing in Heaven.
It's all happening so quickly - this one year anniversary of her passing; this first birthday without her. And the holidays coming up - ya'll, I just can't even think about those yet. I can't tell you how I will feel on those days, or how I will act. I've never done this before. Even in the years to come, when I have a few anniversaries under my belt, I'm guessing that I still won't know what to expect with my emotions each day.
What I can tell you now is that I feel peace. I feel extremely, extremely loved and supported by so many of our friends and even strangers. My family has also helped in getting Ellie's celebration going, and I am just so grateful. I know that I have peace because of the Lord Jesus, but I also know that He uses each and everyone of YOU to make me feel loved and supported. I truly cannot fathom what our life would be like if it weren't for you.
Speaking of YOU . . . ya'll are just amazing! We have had SO many books and special-needs items pour in! The boys and I absolutely love getting the mail each day, along with the daily deliveries from FedEx and UPS. I'm sure I will be sad once they stop coming, bringing us gifts in honor of Ellie Kate, but for now we are thoroughly enjoying it!
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As a reminder, I'm posting the ways to give and participate here below, as well as the drop-off sites, just in case you haven't had a chance to help out just yet. I know it's such a busy time of year, and that makes your involvement in this celebration that much more special! Thank you for giving. Thank you for reaching out and loving us. Thank you for asking how you can make a difference in Ellie's Honor.
Ways to Participate in the Month of Reckless Love (UPDATED NOV. 21st):
1. Donate to our book drive! All books donated will be given to chronically ill children at OU Children's Hospital during Ellie's birthday celebration on December 4th. Hit up one of our drop off boxes OR donate through our AMAZON WISH LIST, November 5th-December 4th:
http://www.amazon.com/gp/registry/giftlist/26F5I0VH3O3FZ/ref=topnav_lists_2
DROP OFF BOXES:
Funky Monkey - 1401 North May Avenue, OKC
Bridgeway Church - 228 West Hefner Road, OKC
Chesapeake Energy - 1600 N. Western, OKC - located in Mike's office; call/text if you'd like to drop off (405-812-3589)
Uptown Kids - 5840 North Classen Blvd #3 (Classen Curve), OKC
Dr. Willoughby, DDS, -1222 S Kelly Ave, Edmond
Keller Williams Norman - 905 24th Avenue NW #A, Norman
Van's Pig Stand, Norman - 320 North Porter Ave, Norman
First Baptist Church, Moore - 301 NE 27th Street, Moore
To The Nines Boutique - 111 West Main St., Moore (Old Towne)
McBride Orthopedic Hospital - 9600 Broadway Extension, Edmond
2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate!
3. December 4th: Ellie's 8th Birthday! Join us at OU Children's Hospital as we throw a party in Ellie's honor. This is a way for us to love on special children who are stuck in the hospital during the holidays, much like Ellie Kate. We will have a birthday party, a reading/story time, and special crafts for the patients (time TBA).
4. December 19th: Share Ellie's story with someone you come in contact with. Post and let us know about your encounter, and also share your favorite Ellie Kate memory or story!
5. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing PINK balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.
FOR WAYS TO GIVE while receiving a tax write-off:
*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and giving goes directly to Lucy Belle's medical costs.
*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more.
*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.
From the bottom of my heart; from the depths of my soul, I thank you for loving us this way and for honoring our Daughter by loving others!
Wednesday, November 20, 2013
Oh Christmas Tree (the pink, purple, sparkly kind)!
Ellie Kate's tree is up at our house. Isn't it beautiful? I just know that she would love it! It's sparkling and has pink and purple and glitter. Ellie Kate would just hop on over to that tree and "pat pat" and pull at it.
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It has a few tiaras on it, and a few ballerinas (in honor of our 'Tiny Dancer'). It even has a few special ornaments, like one we made at her fifth birthday party and a precious one from her friend Annie. And the tree-topper is the Santa hat she wore each Christmas (with sequins, of course). And the tree skirt is one of her baby blankets (Mike's perfect idea!). I hope to add to the tree each year, with precious ornaments and memories. As our little family decorated the tree this week, we each hung an ornament and shared a memory of Ellie Kate. It was just so precious. In the midst of tragedy, a new tradition has been born.
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Really and truly, I cannot believe that it's almost been a year. She just hopped over to that new Christmas tree. She just pulled at it and patted it for the first and last time with her weak, tired, thin little body. She could barely see at that point, but she could tell the tree was there and that it was shining. Ellie Kate loved shiny things here on earth, and I am just sure she is surrounded with many-a-shiny-thing in Heaven.
It's all happening so quickly - this one year anniversary of her passing; this first birthday without her. And the holidays coming up - ya'll, I just can't even think about those yet. I can't tell you how I will feel on those days, or how I will act. I've never done this before. Even in the years to come, when I have a few anniversaries under my belt, I'm guessing that I still won't know what to expect with my emotions each day.
What I can tell you now is that I feel peace. I feel extremely, extremely loved and supported by so many of our friends and even strangers. My family has also helped in getting Ellie's celebration going, and I am just so grateful. I know that I have peace because of the Lord Jesus, but I also know that He uses each and everyone of YOU to make me feel loved and supported. I truly cannot fathom what our life would be like if it weren't for you.
Speaking of YOU . . . ya'll are just amazing! We have had SO many books and special-needs items pour in! The boys and I absolutely love getting the mail each day, along with the daily deliveries from FedEx and UPS. I'm sure I will be sad once they stop coming, bringing us gifts in honor of Ellie Kate, but for now we are thoroughly enjoying it!
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As a reminder, I'm posting the ways to give and participate here below, as well as the drop-off sites, just in case you haven't had a chance to help out just yet. I know it's such a busy time of year, and that makes your involvement in this celebration that much more special! Thank you for giving. Thank you for reaching out and loving us. Thank you for asking how you can make a difference in Ellie's Honor.
It has a few tiaras on it, and a few ballerinas (in honor of our 'Tiny Dancer'). It even has a few special ornaments, like one we made at her fifth birthday party and a precious one from her friend Annie. And the tree-topper is the Santa hat she wore each Christmas (with sequins, of course). And the tree skirt is one of her baby blankets (Mike's perfect idea!). I hope to add to the tree each year, with precious ornaments and memories. As our little family decorated the tree this week, we each hung an ornament and shared a memory of Ellie Kate. It was just so precious. In the midst of tragedy, a new tradition has been born.
Really and truly, I cannot believe that it's almost been a year. She just hopped over to that new Christmas tree. She just pulled at it and patted it for the first and last time with her weak, tired, thin little body. She could barely see at that point, but she could tell the tree was there and that it was shining. Ellie Kate loved shiny things here on earth, and I am just sure she is surrounded with many-a-shiny-thing in Heaven.
It's all happening so quickly - this one year anniversary of her passing; this first birthday without her. And the holidays coming up - ya'll, I just can't even think about those yet. I can't tell you how I will feel on those days, or how I will act. I've never done this before. Even in the years to come, when I have a few anniversaries under my belt, I'm guessing that I still won't know what to expect with my emotions each day.
What I can tell you now is that I feel peace. I feel extremely, extremely loved and supported by so many of our friends and even strangers. My family has also helped in getting Ellie's celebration going, and I am just so grateful. I know that I have peace because of the Lord Jesus, but I also know that He uses each and everyone of YOU to make me feel loved and supported. I truly cannot fathom what our life would be like if it weren't for you.
Speaking of YOU . . . ya'll are just amazing! We have had SO many books and special-needs items pour in! The boys and I absolutely love getting the mail each day, along with the daily deliveries from FedEx and UPS. I'm sure I will be sad once they stop coming, bringing us gifts in honor of Ellie Kate, but for now we are thoroughly enjoying it!
As a reminder, I'm posting the ways to give and participate here below, as well as the drop-off sites, just in case you haven't had a chance to help out just yet. I know it's such a busy time of year, and that makes your involvement in this celebration that much more special! Thank you for giving. Thank you for reaching out and loving us. Thank you for asking how you can make a difference in Ellie's Honor.
1. Donate to our book drive! All books donated will be given to chronically ill children at OU Children's Hospital during Ellie's birthday celebration on December 4th. Hit up one of our drop off boxes OR donate through our AMAZON WISH LIST, November 5th-December 4th:
http://www.amazon.com/gp/registry/giftlist/26F5I0VH3O3FZ/ref=topnav_lists_2
http://www.amazon.com/gp/registry/giftlist/26F5I0VH3O3FZ/ref=topnav_lists_2
DROP OFF BOXES:
Funky Monkey - 1401 North May Avenue, OKC
Bridgeway Church - 228 West Hefner Road, OKC
Chesapeake Energy - 1600 N. Western, OKC - located in Mike's office; call/text if you'd like to drop off (405-812-3589)
Uptown Kids - 5840 North Classen Blvd #3 (Classen Curve), OKC
Dr. Willoughby, DDS, -1222 S Kelly Ave, Edmond
Keller Williams Norman - 905 24th Avenue NW #A, Norman
Van's Pig Stand, Norman - 320 North Porter Ave, Norman
First Baptist Church, Moore - 301 NE 27th Street, Moore
To The Nines Boutique - 111 West Main St., Moore (Old Towne)
McBride Orthopedic Hospital - 9600 Broadway Extension, Edmond
Funky Monkey - 1401 North May Avenue, OKC
Bridgeway Church - 228 West Hefner Road, OKC
Chesapeake Energy - 1600 N. Western, OKC - located in Mike's office; call/text if you'd like to drop off (405-812-3589)
Uptown Kids - 5840 North Classen Blvd #3 (Classen Curve), OKC
Dr. Willoughby, DDS, -1222 S Kelly Ave, Edmond
Keller Williams Norman - 905 24th Avenue NW #A, Norman
Van's Pig Stand, Norman - 320 North Porter Ave, Norman
First Baptist Church, Moore - 301 NE 27th Street, Moore
To The Nines Boutique - 111 West Main St., Moore (Old Towne)
McBride Orthopedic Hospital - 9600 Broadway Extension, Edmond
2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate!
3. December 4th: Ellie's 8th Birthday! Join us at OU Children's Hospital as we throw a party in Ellie's honor. This is a way for us to love on special children who are stuck in the hospital during the holidays, much like Ellie Kate. We will have a birthday party, a reading/story time, and special crafts for the patients (time TBA).
4. December 19th: Share Ellie's story with someone you come in contact with. Post and let us know about your encounter, and also share your favorite Ellie Kate memory or story!
5. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing PINK balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.
FOR WAYS TO GIVE while receiving a tax write-off:
*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and giving goes directly to Lucy Belle's medical costs.
*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and giving goes directly to Lucy Belle's medical costs.
*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more.
*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.
Thursday, November 14, 2013
And So It Begins - Details for Ellie Kate's Month of Reckless Love
OhMyGoodness. Ya'll! I am truly AMAZED, tickled pink and moved to tears by the way you are already getting involved in Ellie's Month of Reckless Love! Particularly with the book drive . . . WOW!
Your generosity, your thoughtfulness and your words of love are encouraging my heart. I'm learning that this time of year will be indescribably difficult for our little family. Celebrating Ellie Kate's birthday, her Heaven day, those last precious moments we held her in our arms; when I focus on it, it becomes just too much. But, the way YOU are outreaching and loving recklessly is giving me faith, hope, endurance, and JOY during this holiday season!! Oh, thank you, Friends! You are breathing life into my heart - into our hearts - by remembering our Dear Girl in this way.
We have some UPDATES for our drop-off boxes, which will all be in place TOMORROW (Friday, November 15th)! That gives you plenty of time to get those books and gifts in. In fact, we've had SO many donations already, that we have added some gifts and toys appropriate for special-needs and typical children! Remember, the boxes will be taken down on December 1st in order to prepare for Ellie's Birthday Party at OU Children's.
Below is the updated list, as well as other ways to give, including how to give and receive a tax write-off. This would include giving to our Family's medical fund through Helping Hands Ministries, giving to NKH Research through NKH Crusaders and giving to OKC Hope Link - the non-profit started to love on families whose children suffer from rare, serious and undiagnosed disorders. You can't go wrong, no matter how you to choose to give in Ellie Kate's honor!
Ways to Participate in the Month of Reckless Love:
1. Donate to our book drive! All books donated will be given to chronically ill children at OU Children's Hospital during Ellie's birthday celebration on December 4th. Hit up one of our drop off boxes OR donate through our AMAZON WISH LIST, November 5th-December 4th:
http://www.amazon.com/gp/
DROP OFF BOXES:
Funky Monkey - 1401 North May Avenue, OKC
Bridgeway Church - 228 West Hefner Road, OKC
Chesapeake Energy - 1600 N. Western, OKC - located in Mike's office; call/text if you'd like to drop off (405-812-3589)
Uptown Kids - 5840 North Classen Blvd #3 (Classen Curve), OKC
Dr. Willoughby, DDS, -1222 S Kelly Ave, Edmond
Keller Williams Norman - 905 24th Avenue NW #A, Norman
Van's Pig Stand, Norman - 320 North Porter Ave, Norman
First Baptist Church, Moore - 301 NE 27th Street, Moore
To The Nines Boutique - 111 West Main St., Moore (Old Towne)
McBride Orthopedic Hospital - 9600 Broadway Extension, Edmond
2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate!
3. December 4th: Ellie's 8th Birthday! Join us at OU Children's Hospital as we throw a party in Ellie's honor. This is a way for us to love on special children who are stuck in the hospital during the holidays, much like Ellie Kate. We will have a birthday party, a reading/story time, and special crafts for the patients (time TBA).
4. December 19th: Share Ellie's story with someone you come in contact with. Post and let us know about your encounter, and also share your favorite Ellie Kate memory or story!
5. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing PINK balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.
FOR WAYS TO GIVE while receiving a tax write-off:
*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and giving goes directly to Lucy Belle's medical costs.
*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more.
*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.
From the bottom of my heart; from the depths of my soul, I thank you for loving us this way and for honoring our Daughter by loving others!
Tuesday, November 12, 2013
A Month Of Reckless Love - Details!
Books are coming in, and we couldn't be more excited! Thank you to all who have ordered books from Ellie's Amazon Wish List! To order from the list, go to the following link:
http://www.amazon.com/gp/
Check out our darling drop-boxes! A huge thanks to Nina Shuman, Katee Bailey, Rachelle Carpenter, and to my Dear Husband for helping us get the boxes together! Look for these pink boxes at our drop-off locations.
Our BOOK DROP-BOXES will be up and ready this Wed, November 13th (that's tomorrow - yippee!)! Here's a list of the drop-off locations:
Funky Monkey - OKC
Chesapeake Energy Corporation (in Mike's office; call his cell at 405-812-3589)
Van's Pig Stand - Norman, OK
Dr. Jack Willoughby, DDS - 1222 South Kelly Ave. Edmond, OK
First Baptist Church - Moore, OK (at the security desk on the West side of the building)
Bridgeway Church - 228 West Hefner Road OKC
Uptown Kids - OKC
Keller Williams Norman - Norman, OK
And more locations soon to come!! Thank you for participating in this outreach and for loving these sick little ones who are too often forgotten or ignored, especially during the holidays. Thank you too for keeping Ellie Kate's legacy alive!
This is a photo of Sophie and Claire - two of Ellie's best friends. They helped put the drop boxes together and wore their Hello Kitty in honor of EK!
Sunday, November 10, 2013
It's Not Okay to Be Silent
When it comes to tragedy, hurt and loss, silence is NOT golden. I'm reminded today of how hurtful silence can be during a time in the wilderness - during times of deep mourning. What I've learned is that silence is like a putting alcohol on a deep, open and gushing wound. It burns and it stings, and it's also very hard to recover from.
I must say that we have been abundantly blessed with many, many friends (and even strangers) who daily remind me and my family that we aren't forgotten - that Ellie isn't forgotten. I have friends who text me daily, those who have prayer groups for me, friends who leave gifts on my doorstep, those who send me a note in the mail, or a picture they found of Ellie Kate, Aunts who send me Scriptures and quotes and let me know that I am prayed for. And don't even get me started on my parents and how they remind me every second that I am not alone!
I am grateful to have friends who love me well. But the reality is, not everyone who is hurting has this. And, as in our reality, we deal with even family members who fail to reach out or remind us that we are loved, or remembered to tell us that we are thought of. Oh, how I desperately want this to change, not just for our family, but for the hurting world in which we live!!
Not everyone has the gift of Mercy and Compassion. It doesn't come natural to everyone! Not everyone is born a cheerleader or has the gift of Encouragement. Not everyone knows how to love those who are hurting in practical and real ways. I fully believe that one of the reasons for our trials is to teach the world around us how to love better, and that's what I want to do tonight in letting you know that it's not okay to be silent.
Many times, people are silent during grief and loss because they are afraid to hurt those who have suffered loss. This includes miscarriages, job losses, death of a loved one, lonlieness, surgeries, accidents . . . I could go on and on! Many times, people understandably avoid talking to those hurting because they don't want to add to their stress. They think that, if they bring up the subject, the loss, the loved one, it will only trigger more pain and in some way will even hinder the friendship or relationship. I want to tell you tonight that this is not true.
You see, the person hurting is already hurting. Sounds silly, but it is very true. They are aware of their loss. If they are like us, it consumes every moment, every thought, every longing, every memory, every dream that they experience. They already feel the loss, and you saying something will not add to it. If for some reason it does, that person will let you know. Their emotions are already raw, and I'm pretty sure they will have no problem asking you to move on from the topic of their heartache.
Here's the deal: when you are silent, when you avoid the obvious subject and hurt, what you are essentially showing and saying to that person/family is that you don't care. They see it as you have forgotten about their loved one, about their loss, about their hurt. They see it as you do not care about what they are going through. They see it as though your life and troubles (even trivial ones like not being invited to that special party or you chipping a nail) are much more important than the hurt they are living in, which is likely the deepest pain, the darkest time that they have ever faced. Whether you mean it or not, this is how it comes across, Dear Friends.
Jesus commands us to live this way, to love recklessly and selflessly. He tells us to hurt with those who hurt and cry with those who cry (paraphrasing mine). It's time we put it into practice . . .
Romans 12:9-16 - "Love must be sincere. Hate what is evil; cling to what is good. 10 Be devoted to one another in love.Honor one another above yourselves. 11 Never be lacking in zeal, but keep your spiritual fervor,serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality. 14 Bless those who persecute you; bless and do not curse. 15 Rejoice with those who rejoice; mourn with those who mourn. 16 Live in harmony with one another. Do not be proud, but be willing to associate with people of low position.[c] Do not be conceited".
Bottom line: Folks, these days people and even Believers, best friends and family members do not love well. They love others selfeshly or in ways that are convenient for them (aren't you glad that Jesus love us this way?!). Often they just plain don't know what to say or do. The Bible tells us clearly what to do, and I've given you some ideas that God has laid on my heart:
Let's love well. Let's love recklessly. Let's remember those who have passed and love their loved ones in practical ways. And when in doubt, ask yourself, "How would I want to be treated if I had gone through this? What would help me if I were in this situation?".
I can't wait to see what the Lord will do in and through you with these things!!
With Hope,
Ryan
Lucy "praying" during her class at church today!
Wednesday, November 6, 2013
In Honor of Ellie Kate - A Month of Reckless Love
The month of December will soon be upon us, and I can hardly believe it! I say that often, but it is oh-so-true, Friends. I REALLY cannot believe that it is almost December, the month we will celebrate Ellie Kate's life and death.
This year, we are starting a grand tradition - a project of service and love. The event itself will take place the entire month of December. After all, that is the month Ellie was born, the month she was sent home on hospice and the month she went to be with Jesus. The event will be called, "In Honor of Ellie Kate - A Month of Reckless Love".
We have a Facebook Page dedicated to this event, under the same title. I welcome you to join our Facebook Page/Event so that you can stay up to date on all of the details! Here is a brief explanation of what the celebration will entail . . .
This year, we are starting a grand tradition - a project of service and love. The event itself will take place the entire month of December. After all, that is the month Ellie was born, the month she was sent home on hospice and the month she went to be with Jesus. The event will be called, "In Honor of Ellie Kate - A Month of Reckless Love".
We have a Facebook Page dedicated to this event, under the same title. I welcome you to join our Facebook Page/Event so that you can stay up to date on all of the details! Here is a brief explanation of what the celebration will entail . . .
| Ellie Kate McLaughlin was born December 4, 2005 in Oklahoma City. Ellie suffered from NKH - a rare and terminal genetic disorder, and spent most of her birthdays in the hospital at OU Children's Hospital. Ellie Kate taught everyone around her how to love recklessly and selflessly - to love the unlovely and serve those in need. Ellie Kate went to be with Jesus on December 23, 2012. During the month of December, we celebrate our Precious Daughter by making a difference in our communities, by loving and serving the world around us. Join us as we honor Ellie Kate by loving others this month! November 5th-December 4th: Purchase a book or donate your favorite story to Ellie's cause! Your gift will be handed out to patients at OU Children's Hospital at Ellie Kate's birthday celebration on December 4th. Books should be suitable for children ages birth-18 years.
December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate! December 4th: Ellie's 8th Birthday! Join us at OU Children's Hospital as we throw a party in Ellie's honor. This is a way for us to love on special children who are stuck in the hospital during the holidays, much like Ellie Kate. We will have a birthday party, a reading/story time, and special crafts for the patients (time TBA). December 19th: Share Ellie's story with someone you come in contact with. Post and let us know about your encounter, and also share your favorite Ellie Kate memory or story! December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing PINK balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl. More details will follow, so keep watching for them! I want this to be an amazing event, all month long. I dream of Ellie Kate's legacy living on through this - through YOU loving those around you in reckless, big, intense, and purposeful ways. I can't wait to see what God will do through you! |
Friday, November 1, 2013
Hope Link Halloween
Last night was a very special night. Not only was it the night we were able to dress up and go door-to-door for candy, but it was also the night of our annual Hope Link Halloween Party!
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For those who don't know, Hope Link is the non-profit we started for families whose children suffer from rare, serious and undiagnosed disorders. We are a tight-knit group, and for the last three years, our family has had the privilege of hosting our dearest Hope Link friends for a night of food, fun and fellowship. We trick-or-treat in a group, in a parade of wheelchairs and equipment. We must be a sight, for sure!
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I admit that this is one of my MOST favorite nights of the year with our Hope Link Buddies. It's a night when we can all celebrate like typical ('normal') families! We can all dress up and not worry about seizures, feeding pumps, alarms, diapers, etc. No one notices; it's not a big deal. All we notice are the cute costumes and the amazing ideas parents come up with in decorating their child's wheelchair! It's super fun.
My eldest Princess was of course missing last night. It blows me away that it's been a year since we celebrated trick-or-treating with Ellie Kate! She was a cute NKH Bee last year, and she had picked out a Hello Kitty Halloween t-shirt for me, which I once again wore yesterday. Last year she LOVED trick-or-treating with her friends, and she even went to a party at her teacher's house! Really and truly, how has it been a year since then?
This time of year is usually busy with me planning a birthday party for Ellie Kate. This year is a little different, although I'm still planning on Ellie's behalf! Hopefully it will be something we can do every year from now, in honor of Our Girl. I will ALWAYS celebrate Ellie Kate.
Ellie's birthday is December 4th. We will be celebrating her life during the month of December, and on this day in particular. We won't be doing something big or special on the day that she went to be with Jesus; instead, we will be celebrating that beautiful day on which she was born. I invite you to join us. Mark your calendars and watch for more information!
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For those who don't know, Hope Link is the non-profit we started for families whose children suffer from rare, serious and undiagnosed disorders. We are a tight-knit group, and for the last three years, our family has had the privilege of hosting our dearest Hope Link friends for a night of food, fun and fellowship. We trick-or-treat in a group, in a parade of wheelchairs and equipment. We must be a sight, for sure!
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I admit that this is one of my MOST favorite nights of the year with our Hope Link Buddies. It's a night when we can all celebrate like typical ('normal') families! We can all dress up and not worry about seizures, feeding pumps, alarms, diapers, etc. No one notices; it's not a big deal. All we notice are the cute costumes and the amazing ideas parents come up with in decorating their child's wheelchair! It's super fun.
My eldest Princess was of course missing last night. It blows me away that it's been a year since we celebrated trick-or-treating with Ellie Kate! She was a cute NKH Bee last year, and she had picked out a Hello Kitty Halloween t-shirt for me, which I once again wore yesterday. Last year she LOVED trick-or-treating with her friends, and she even went to a party at her teacher's house! Really and truly, how has it been a year since then?
This time of year is usually busy with me planning a birthday party for Ellie Kate. This year is a little different, although I'm still planning on Ellie's behalf! Hopefully it will be something we can do every year from now, in honor of Our Girl. I will ALWAYS celebrate Ellie Kate.
Ellie's birthday is December 4th. We will be celebrating her life during the month of December, and on this day in particular. We won't be doing something big or special on the day that she went to be with Jesus; instead, we will be celebrating that beautiful day on which she was born. I invite you to join us. Mark your calendars and watch for more information!
- We will have a party at OU Children's hospital, benefiting children who spend time in the hospital like Ellie Kate did while she was there on earth.
- We will have ways for you to give in Ellie's honor.
- There will be Ellie's Acts of Kindness, and you can love recklessly and practically in her honor.
- There will also be a little get-together and balloon release at Ellie's Spot on the evening of December 4th.
Time goes by too quickly, Friends. Life is but a blur! Surround yourselves with loved ones. Love others well, intentionally, purposefully. Give yourself to God and recklessly love the world around you.
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