Adventuring

Ya'll, Our Family has been adventuring!  We've been North and we've been South, and it has been WONDERFUL. For the last several summers, we've taken the boys away for a while.  There are several reasons for this:  Ellie Kate would seize in the car, so car trips were impossible for her.  Also, as Mike often reminds me, I must give up my selfish desire to have my family experience everything together because it hasn't always been the best thing for our girls. So, in the summers, we've taken the boys away and really focused on them!  They eat it up, and love all of the attention.  It really is good for them, and it's good for Mike and I too!  And my parents and our nurses have always cared for the Girls, so they are plenty spoiled too.  Mike's parents even watch Jack (our dog). Everyone is happy! 

As a family, we have never been down to San Antonio to visit my Brother and his wife, Charla.  Their precious twins, Liam and Teagan just turned one, and we were able to take the boys and spend several days down with them in the Texas heat.  It was perfect! 

The Tully's and their Texas Hospitality were so welcoming and we felt right at home.  The boys were amazed at watching the babies do things like eat by themselves, through their mouths - they thought that was amazing!  Teagan flirted with Mike the entire time, and I think he's sort of smitten by her as well.  Teagan LOVED my Ellie Kate necklace, which I always wear.  She liked the charms, and continually was drawn to Ellie Kate's thumb print charm.  I teared up as she did this over and over.  She will never know how special it was to see her little hand touching the finger print of my daughter - someone she never was able to meet in this life.  It was a special memory I will treasure forever. 

They are Connected Through That Charm

 



Our stay was over the Fourth of July, and we watched the fireworks in the most perfect of spots - in the park of the Tully's historical neighborhood.  It was actually sprinkling as the fireworks went off, but it was wonderful!  We were surrounded by many different languages that night and it reminded me of what a special Country we have - one that was founded to welcome ALL people from all religions and all walks of life.  It's a pretty amazing thing. 

 

Ya'll.  I love these babies like my own!!

Since the Tully's live in Downtown/Midtown San Antonio, we pretty much walked wherever we went.  It was SO fun to get a taste of the culture!  We of course ate AMAZING Mexican food and Tyler was sure to fill us in on all of the history of his incredibly special town.  The trip was beautiful, and I was so, so sad to leave.  I just cannot tell you what a blessing it was to see Ty and Charla in action as parents.  They truly are some of the best parents I've ever seen, and I couldn't be more proud of them both. I miss Tyler, Charla and those cuddly babies so much already!!  Oh, how I wish we lived closer! 

 

 

We were home just a few days before we left for our new great adventure!  Mike's brother, Drew and his wife Liz, live in St. Louis with their precious kids, Andrew, Matthew and Molly.  We haven't been up to see them since Conner was almost two and I was pregnant with Ellie Kate!  We were SO excited that it worked out for us to come up, and the St. Louis McLaughlins welcomed us with a darling sign as we pulled up to their house!  The boys jumped out as soon as they could, as they were SO excited to see their cousins.

 

 

 

It was non-stop playing with legos, hitting golf balls, playing soccer, throwing the football, playing basketball, and swimming!  Going to the St. Louis McLaughlin's is like going to a theme park.  They have an absolutely gorgeous backyard with a huge common space, so the kids could run their little hearts out until late at night.  It was picturesque, really and truly, and I found myself completely relaxed under the stars each night, watching the fire flies as the kids played and the parents visited.

 

 



Molly, Matthew and Henry

 



 

We also went to their Country Club pool and swam, and swam and swam; well, Mike and Drew played and swam with the kids while Liz and I enjoyed the warm sunshine and relaxation that comes with laying out and not having to entertain the kiddos.  Henry and Conner fell in love with the diving board, and Henry tried to copy the teenagers with all of his tricks off of it.  It scared me a few times, I admit - but I am super proud of his tenacity and brave-spirit!! 

 

 

Henry, Molly, Andrew, and Conner at Matthew's Swim Meet

 

Miss Molly and Liz took me to the American Girl store and helped me pick out a doll for Lucy.  I wanted to get her a special one for her third birthday, which is coming up in September.  I loved seeing little Molly run through the store, checking it all out.  It's so fun to watch little girls just get so giddy and excited over such fun things!  I don't see that often in my house, so I really took a lot of joy in seeing Molly enjoy the store and in just watching her play all weekend.  She is a doll.

 

 Sweet Molly

 

We were even able to meet up with some of our dearest OKC friends while we were in St. Louis!  We at a quick lunch with our Hope Link friends, Allison and Brian Dalke and Meghan Dickinson who were all there for a large Scentsy Convention.  We met downtown St. Louis and talked about Hope Link and about how good God was to let us all meet up in a different state.  Our time together can be described as "JOY"!  Pure joy. 

 

Precious Hope Link Friends!

 

 

 

 

We also conquered the St. Louis Arch!

 

 

The St. Louis McLaughlins loved on us so well and made us feel very taken care of.  We really didn't want to leave today and we kept putting off the goodbyes.  I wish we lived closer.  I wish Mike had his brother to see and talk to in person on a regular basis.  I wish My Boys had their cousins to play with and grow up with on a daily basis.  Family is just a really precious thing, and this weekend was another reminder of that. 

 

 

 

We are SO grateful that the Lord graciously provided a way for us to drive both to Texas and to Missouri these past two weekends!  We feel loved, refreshed and renewed.  We also have made tons of precious new memories with the boys.  And of course, it wouldn't have been possible without God's provision, without the help of our parents and our nurses, and without the hospitality of our families! 

 

I'm going to bed with a grateful heart!

Ryan 

 

 

My Sweet Little Henry

Henry Is SIX (almost)!!

Tomorrow is Henry's sixth birthday!  Henry is My Promised Child - the only one that God told me that I was going to have!  Not all of you know Henry's story, so I thought I would share it with you in honor of his special day . . .

In 2012, Mike and I felt like the Lord was telling us to have another baby.  This was a crazy thing, seeing that we then knew that each of our pregnancies had a one in four chance of having NKH.  But, God really and truly laid it on our hearts to try for another baby.  I longed to experience the typical newborn experience just one more time.  God gave me Isaiah 43:18-19.  That same day, my Mother called me with those very same verses that God had given her for me.  That evening I received a phone call from one of my best friends.  Guess what God had laid on her heart to encourage me with?  Yep, it was Isaiah 43:18-19. Confirmation was all around us, and God gave us a perfect peace.

Isaiah 43:18-19, "Remember not the former things, nor consider the things of old.  Behold, I am doing a new thing; now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert."  

This passage told me that God was going to do a good, new and exciting thing in our lives.  He was going to do something that seemed impossible - making rivers in the desert, something only God could do and something only He could get the glory for!  And before we even tried, we were pregnant!

We did CVS testing with Henry, as we wanted to know as early as possible if he had NKH.  We wanted to have a plan in place, although I felt in my heart that I would have a healthy baby boy.  I was ecstatic to receive the phone call that morning, telling me that this little man was only a carrier with the same DNA mutation as his daddy.  I cried and I danced in our living room while Conner and Ellie Kate were asleep.  I danced before the Lord with joy!  I excitedly called Mike and he let out a huge sigh of relief.  What a precious, priceless gift.

In our family, it turns out that Mike has named the boys and I have named the girls.  Of course, we each have agreed and liked the names that were chosen.  Mike had been reading about Henri Nouwen - an amazing man of God who was a priest, a pastor, a writer, a professor, and among many other things, an aid to a special-needs individual.  Nouwen said that his best and most fulfilling work was done in caring for this young man.  Henri Nouwen actually devoted his life to this man, and lived with him, caring for his every need and pouring into his life while teaching him the love of Jesus.  What an incredible picture of Christ and of what Christianity is all about (or should be all about)!  So, we decided on Henry, which means "Ruler of the Home".  For those who know Henry, you know that his name fits him well!  I knew that this little boy's middle name just had to be Isaiah, as a constant reminder of God's promise and confirmation on his life.  Isaiah means, "YAWEH is Salvation".

Henry was born at 36 weeks on a Sunday evening.  I had invited my Mom, Jayme (Mike's momma) and my sister into the delivery room.  I just knew that one day, I would want to see my grandchildren born (if my daughters-in-law will allow me), and Mike and I really thought that this would be the last chance to invite our family in for this occasion.We had the room at the end of the hall - the biggest delivery room in the hospital.  It had beautiful large windows, and the sky lit up with fireworks.  The Fourth of July is my favorite holiday, so I felt like it was a treat from the Lord to see those firework shows out that window as I was laboring and delivering Henry.  It made me so happy and I felt so loved by the Lord.

Henry weighed in at over 7lbs, which is pretty good for being early!   He smiled at me, honest to goodness! We have a photo of it somewhere.  This little man smiled at his momma on the day he was born - eyes open, staring right at me, with a beaming face. Ever since then, there has been no stopping Henry . . . 

• Henry loves animals.  He always has - every kind of animal, no matter what size or shape.  
• Henry likes to eat.  He has always been a good eater and nursed until he was 27 months old!  He loves fruit and candy (he likes the sweet stuff!).
• Henry loves sports!  His first word was "ball".  On his first bday I gave him a bag of balls, and he loved it.  He gets his hands on a ball any chance he can get.
• Henry is very athletic.  This kid has had an arm on him since he was six months old.  He excels at each sport he tries, and he works hard at all that he does.
• Henry loves Conner.  He has always looked up to Conner and continually compliments him.  
• Henry loves Ellie Kate.  Henry and Ellie didn't get along well while she was on earth.  She liked to wrestle too much and pull and bite at Henry (loving on him in her own way).  But, he talks about Ellie Kate constantly and draws pictures of her each day.  He talks about going to heaven to see EK.
• Henry loves Lucy.  He pats her head and strokes her hair when she's upset.  He gets in her bed and plays with her.  He helps me when I feed and change Lucy too.
• Henry loves his family.  He is a hugger and he loves fiercely! Henry often says, "You are the best mom in the whole world".  He says this about his daddy, brother, sisters, dogs, and grandparents!
• Henry is a giver.  I truly believe his spiritual gift is the gift of GIVING!  He gets so much joy out of giving to others.  Even today, he gave two of his birthday presents away to friends! 
• Henry loves music.  He has a great voice and loves to sing - particularly praise and worship songs. 
• Henry has no fear.  From trying new foods, to going to new places, Henry is all for it.  He even jumped off of the high-dive recently at the pool with some friends!  When he first saw the ocean, he ran right in.  He likes to jump off the top of the car and off of the roof of our home (these two things are NOT condoned by us, by the way).  The world is an exciting adventure to Henry!

My Sweet Henry.  He is such a true, perfect, promised gift.  The first literal gift that God clearly told me He would give me!  Through Henry, God has given me more faith and has stretched me in ways I could never have imagined.  I parent better because of Henry.  I give better because of Henry.  I love better because of Henry, and I'm inspired by his reckless-abandon towards life!

Jesus, thank you for Henry.  Thank you for giving me the promise of this Little Man.  Thank you for letting me live to see that promise fulfilled.  What a joy it is to parent and love Henry.  Thank you for choosing me to be Henry Isaiah's Momma!!

My Sweet Little Men

Parenting is hard, ya'll.  Can I get an "amen"? Mike and I have the great, great privilege of raising two beautiful, tender-hearted young men.  I am so grateful for the chance to parent both special-needs and typical children.  The job is so different; the ebb and flow is completely opposite, and I often feel that we never quite parent either one well.  I think that's probably true for all parents though, right?

Our Little Men have been through a lot.  I do not put them on a pedestal, as I know each and every individual goes through their own trials and experiences throughout their lives.  I just know what I've lived, and what my own children have been through, which is a lot for their young ages.  I don't think I will ever know the impact the special-needs life has had or will have on Conner and Henry.  I don't think I will ever know the extent to which they are affected by the death of their Ellie Kate.

As many of you know, both Conner and Henry have experienced behavior issues since Ellie's death.  This, of course, is completely normal.  It's normal for adults, who know how to speak and express themselves.  Imagine being a young child, not knowing how to say the things you are feeling?  We've been through family counseling, group counseling and have had the boys in individual therapies.  All of these things have helped tremendously, however the Lord has recently revealed that our Sweet Boys needed more help.

I don't want to invade their privacy, or exploit them in any way.  I share this with you so that you can pray for our Boys.  Rarely do I focus on them here on the Blog or in my posts, but that doesn't mean that we don't focus on them.  Quite the opposite - I often think we spend more time on and with them than we do with Lucy (or did with EK).

Would you pray that God would heal the hearts of Conner and Henry?  Would you pray that He would bring Peace to their hearts, to their minds and to their bodies? Pray that the Lord would give Mike and I wisdom as we parent these Warriors. Please pray that the Lord would move mightly on behalf of Conner Michael and Henry Isaiah!  I have said it so often, and I believe it to be true not just for me, or for Our Girls, but for Our Boys as well - God wants the very best for them!  He will work ALL things together for their good, no matter what it may look like to me as their momma.  God the Father has their best interest at heart, and I can rest in that!  Thank you, Jesus.

I'm so grateful for My Little Men.  I'm grateful for the tender-heart of Conner, who helps me with his Sister and kisses her and talks to her all the time.  I'm grateful for Henry, who pats Lucy's head and comforts her when she cries.  I'm thankful for the unique ways that they handle the loss of Ellie Kate . . . Conner so matter-of-factly reminds me that Ellie is SO much better-off and that we wouldn't want her back here where she would be sick!  He reminds me that she is complete, whole, healthy, and happy and that we will see her again soon!  I love the way Henry talks about Ellie Kate multiple times a day, even though he was only four when she passed.  He talks about how he misses her, how they used to wrestle, how he wishes he could see her in heaven, how he can't wait to get there so he can see her.  And I love the many pictures that Henry draws of EK almost everyday!

Oh, Father!  These things are so special to me!  May Ellie and Lucy always be so vivid and real to Conner and Henry.  May their legacies live on through Our Men!  May Conner and Henry be shaped and molded by the experiences you have brought them through, and may you use them for your glory!  Thank you for the amazing gift of raising these precious boys!  

The Big Girl Bed

We are home!  It looks like Lucy had a tummy bug, and we gratefully avoided the big ones such as C-diff and Rotavirus (yippeeee!!!).  Every little bug hits her so very hard.  What could be something quick and easy for a typical kid can put Miss Lucy Belle in the hospital for several days.  This is so true for many special-needs kiddos.  Conner too is feeling better, and is back to his old self.  Whew!

This hospital stay confirmed what we already knew in our heads . . . Lucy has outgrown her crib and nap-nanny.  How can it be?!  In December, Lucy was still wearing size 18 month clothes.  Now, Lucy is wearing 4t's!!  What a growth-spurt our Girl has grown through!  We knew giving up the crib was the best thing for her, but it has been tough.  You see, Lucy has now graduated up to Ellie Kate's handicap-accessible bed.

That sweet bed is the best one in the house!  It has a great, fancy, fluffy mattress that is so cozy.  Me, Mike, Mindy, and both of my parents have slept in it at one time or another with Ellie Kate.  And now it's Lucy's turn.  No more babies in my house - sigh.  

We worked hard yesterday setting up the bed (Mindy and I took the beds apart all by ourselves - whoot!), and then it was time to make the bed and get it ready for the night.  I froze.  I saw the sheets, and I couldn't pick one out (Lucy just uses fitted sheets).  Each sheet has a memory.  My Ellie Kate laid on those sheets.  She cried on those sheets.  She slept in that bed and found so much comfort in it.  Ellie Kate preferred her bed to many things.  That Girl just LOVED her bed and loved playing in it with her babies.  She wanted to be in it all the time, and would even crawl to it to let us know that she wanted in it.

Ellie's First Night In Her Big Bed 

Little Ellie Kate All Cozied Up

And now, Lucy loves this bed. She's been crying each time we take her out of it today!  It's so sweet and  . . . well, it's just very bittersweet.  Lucy has grown so much and looks so much like Ellie Kate.  Her mannerisms mimic those of her big sister (which is so from the Lord).  It's a blessing to have another curly-haired little girl in this precious bed, but it hurts my heart a little bit too.  You can lay there and close your eyes, taking in Lucy's noises and movements, and you feel like you are with Ellie Kate again.  Thank you, Lord for sweet reminders.  

 Lucy and Henry 

 It's Just So Comfy!

Lucy Loves Her Bed!!

You may remember me mentioning that the cemetery messed up on Ellie's original headstone.  Very strange, I know, but I wanted it to be perfect.  I wanted it to represent My Princess well.  So, they ordered a new one and recently placed it.  They were going to throw the other one away, and the thought of that just tore me apart!  So, Mike and Preston (Nurse Mindy's husband) went to pick up the headstone yesterday.  Ya'll it weighs about 450lbs.  Seriously.  These men worked so hard to get it and bring it home.  And then, Preston was kind enough to take it to get cut.  Four thick inches of granite.  He had it cut to look nice and neat and perfect just for us.  And now, it's home and next to the tree we planted in honor of Ellie Kate.  We planted it right outside Mike and I's window, and it's beautiful.  I'm so thankful that Jesus causes ALL things to work together for our good.

Thank you for your prayers for Lucy, for Conner and for me (I'm still dealing with some kidney/bladder issues).  We just love ya'll so very much and consider each of you as part of our family.

You Take the Good You Take the Bad

Do you ever feel as though you take one step forward and two steps back???  Yep, me too.  And that's where we are this morning . . .

Yesterday was "Bring Your Child to Work Day", so Conner shadowed Mike and had a ball.  They picked up dinner on their way to see me and Lucy at the hospital last night, and of course Conner's personal choice was an un-named Chicken joint (Mike and I dined on something totally different).  Conner gobbled up his chicken, which he is obsessed with, and life was good.  Until late last night . . .

Brother-Sister Time Before the Food Poisoning

We all came home to sleep and spend time as a family while my Sweet Daddy stayed with Lucy.  I mean, she was doing great, right?  And we were going to go to bed at 10pm and sleep and have a glorious time; that is until Conner came into our room letting us know that he had thrown up a "little bit".  Um, Okay . . . I let Mike take that one while I shoved Conner into the shower.  Yes, it was that bad.  Mike stepped in one more time, gloved up, gagging.  He asked where the Scentsy was, and I knew it was bad.  And then stuff started coming out of the other end.  Poor little Conner.

After A LOT of cleaning and disinfecting (God Bless My Husband!), and some extra loving on Our Boy, we all settled in - well after midnight.

Here's the GOOD NEWS:  We think Conner just had a food poisoning!!  I say "just" because that means that a yucky, icky, stinky bug won't be going around our house.  Yippee!!  He is feeling MUCH better this morning.  Poor Little Man.

WHEW.  Now on to Lucy . . .

Lucy had a really good day yesterday.  She slept a lot and tolerated small bolus feeds.  She only vomited once the night before, so we felt like we were on the right track, thus My Dad made plans to stay the night with our very stable and happy girl.

I Only Take "Selfies" With My Children

And then I got the call this morning.  Actually, it was a voicemail, and it's really hard not to giggle at it.  My poor Daddy calling, telling me that Lucy is vomiting and he can't stop it and she needs new clothes and she's really upset and crying and he can't text and all-the-while Lucy is screaming at the top of her lungs in the background.  And THAT is the BAD news.  Fun times, ya'll.

 I'm getting ready to leave home, drive the boys to my Parent's and head up to my sick little girl.  Not sure what the day will  hold.  I do know that they were able to get some good stool samples, so that may help in her diagnosis (I hope).  We are still praying that this is an explainable illness or problem, other than the mysterious GI/Motility issues we've all grown to hate.

We would love your prayers that we would ALL stay healthy and that Lucy's diagnosis would happen quickly so that treatment can begin quickly (we are treating symptoms, but having a dx would be great).  Thank you so much!

You Take the Good, You Take the Bad . . .
Ryan

Lu Lu Belle

Just a quick post to let you know that Lucy has been admitted to OU Children's hospital.  She started vomiting yesterday afternoon, and really became sick overnight.  The ER got us right in this morning, and we were in a room on the floor pretty quickly as well.  Such a blessing.

Lucy has finally fallen asleep this evening and is on continuous feeds at a very slow rate.  We will see how she does and go from there.  Mike and I are praying that this is just a stomach bug, and that it has nothing to do with her gut working/not working, if that makes sense.  We hope that it something that will quickly resolve itself and that her tummy will start working again soon.

Thank you for praying for Lucy.  Thank you too for praying for the boys, who are really struggling right now.

With Hope,
Ryan

Out of the Bubble

God's Beautiful Promises

It seems as though our family is coming out of the Bubble that has held us for so long.  Maybe I should say that it is partially coming off of us, or we are partially stepping out of it.  I am sure that many of you are tired of hearing about the struggles and issues we've dealt with, but it's just our life. The scales are falling off, and the load is getting lighter, and I'm pretty excited about it.  

Last weekend, we attended an anniversary party for our church, Bridgeway Church.  Mike and I have attended this Precious Body since we were dating - thirteen years ago!  It was so fun to see so many faces and to also be reminded of God's faithfulness.  However, Mike was a bit sad when we left the party.  He said that there are so many people that have loved on us and have prayed for us for SO long, and he doesn't know very many of them well.  I am completely convinced that it is because of the Bubble we've been in, and it saddens my heart.  

I don't pretend to know what it's like to go through many different "survival mode" situations.  But, I do know what's it like to feel that you have been given a burden that you don't feel prepared for; to feel as though you are trapped and that your dreams have been trampled.  I know what's its like to lose my Precious Daughter and to hurt more deeply than I ever thought possible.  I also know what it's like to choose each day to love Lucy like there is no tomorrow, because there truly may not be.  To struggle spiritually, financially, socially, mentally, physically over your family, your marriage, health, and everything in between; to have felt so deeply and disparingly that you don't know if you can return to "normal", or what you hoped would be your normal.  

So now, there is this new freedom that we are feeling as a family and as a couple . . . we are trying out new adventures with our kids, spending extra special time with the boys, going on date nights and focusing on our marriage.  We've been able to host friends from out of town and even plan a few short trips this summer to see family.  These are all things that we haven't been able to do before.  We just haven't been in a place to do this in so long and it feels so good!  

The Kids with Paul Archibald, our Son from Boston!

Boys Being Boys

Sweet Memories

Henry the Hobbit

Family walks and baby-wearing!

Jesus has set us free, and we are learning to live in that freedom again.  Being free and FEELING free are both amazing things, and I'm so grateful, so hopeful, so excited to slowly be tipping my toes into the freedom that God is reintroducing to our lives . . .

Ryan