Never Forgotten

In memory of our Kaymaen Shae March 2nd thru March 9th, 2006

In two years, we've discovered that time does not heal. Time only allows God to teach you how to deal with your loss. My heart still skips a beat when I see a mom at a restaurant, church, the shopping mall-cradling her small child. I smile softly, making eye contact with the mother, not daring to really look inside the small pink blanket. While I'm blessed and honored to have the opportunity to help families in NICU and PICU...it takes my breath to see that tiny baby and all the monitors and medical equipment. The smells and sounds immediately take me back to our hospital stays.
I still don't understand why we couldn't keep Kaymaen, but I know we made the right decision to let her pass away here at home, peacefully. I know in my heart, that even though I knew she had this devastating disorder, I wanted her desperately, wholeheartedly. Didn't care that we would have two special needs children. Didn't care that she would depend totally on me for all her needs. All that mattered was she was ours. She had Rylee and Ryann's chubby little chin and cheeks, her Daddy's long tapered fingers.
In the middle of the night, while sitting quietly with Rylee, listening to her breathe - I recall that week with Kaymaen. How I felt holding her. How tiny her nine and a half body felt compared to Rylee and Ryann. I think of how Ryann was so excited and thrilled to have "Bob Hallelujah" (as she named her during the pregnancy) home, and how she wanted to hold her all the time. Taking pictures of the girls together, how big RyleeBug looked compared to her new little sister.
But I also remember the peacefulness of having her here. I remember when she took her last breathe in my arms. I think of our girls' specialist, Dr. Jones coming to the house at 2am to take care of everything. I remember our friend, Ernie Hall, whose family owns the funeral home-standing here in our home, tears running down his face as he tried to encourage us, yet all the while he was thinking of his three little girls-the same age as our own. I remember the funeral service. The memorial service that Sunday-the outpouring of support and love from our friends and family. A feeling of relief that she was safe in Heaven, not in pain never to know fully the struggle and effects of NKH.
For me, the important thing is I remember. All of it. I was so afraid I'd forget something important-the feel of her lying in my arms, the smell of Dreft and Johnsons & Johnsons. For me, healing has come from the remembrance. Healing has come as I hold Rylee and care for her needs. Healing comes when Ryann puts her tiny hand in mine and says, "Mom I was just thinking of Kaymaen. I bet she's eating ice cream all the time and lives in a castle just like Cinderella's."
To all our friends, family, church family, strangers who have become part of our heart through this site...Thank you, for praying, for caring, for continuing to check in on us.
I cannot honestly say that my heart will never not ache for my little one. But I can say that God has really given us a "peace that passes all understanding." And we now live our life honoring Him and honoring the life of our girls-trying to make a difference.
Please pray for us this week as we go about our day, taking care of the mundane ordinary things in life-tucking in girls, playing dress up, giving baths, and throwing spa parties-things which now seem extraordinary. Pray that we will never grow ungrateful, hard hearted. Pray that God grows us up more in Him because of our life circumstances, not in spite of. Pray as we teach Ryann and care for Rylee. Pray God will continue to put the right people in our lives, at just the right time. Pray that He will use us in some way to impact others.
Thank you for remembering Kaymaen with us.
We love you sweet baby and miss you so much...but know we will see you again.
God's Masterpiece
"For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee, for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me, when as yet there was not one of them." Psalm 139:13-16

Fiona is home!

For all those praying and wondering about Rylee's little buddy, Fiona...She came home today after her second jag in the hospital (and the crowd goes wild!).
Please continue to pray for the entire Fitzpatrick family (Illinois).

As you can tell, she is just as spoiled with love as our Rylee.

This is Charles-Alexandre. His mommy and I say that he and Kaymaen are in heaven..."shacked up" together. Girls love a guy with an accent! His parents, Sonia and Marc, currently live in Paris. Recently, they started a non-profit. The

Charles-Alexandre Foundation assists families in getting the care they need for their chronically ill child. What a wonderful way to honor his time here on earth and his memory. We had the opportunity to meet at this summer's NKH Conference.

Sonia and I could have gabbed all day long.

Sonia loving on Rylee.

Little Tinkerbell is Miss Ellie Kate from Oklahoma. Her mommy is Mrs. Oklahoma, explaining why Ellie Kate is so gorgeous! This sweet family have also been in and out of the hospital recently. Ellie Kate has a NG tube for feedings right now, which can be really trying for a more active NKH child. Please pray that she will soon be back to receiving all nutrition by mouth. Pray they get a GI appointment and get some positive news/answers very soon. Ryan and Mike are also expecting their third child-so the whole family is worn out. Hospital stays are always tough-especially when you have other little ones at home waiting for you.

We'll be sure to keep you up to date on how she is doing!

2007 NKH Conference. Rylee with Fiona (left) and Ellie Kate (right).

And of course this is the Carter Family. Olivia is eight days older than our Rylee. Angie and I started chatting by phone and emailing fast and furious when the girls were a few months old. We love that the girls are "best friends" and are currently plotting how we can all meet! Maine is just too far away.

I wanted to put a few of the kiddos photos on here. There are so many wonderful families that we've meet personally, or have touched hearts with via the computer. I hope that you will continue to check on these special families and add them to your prayers when you pray for us.

Fact is better than Fiction...

Okay-so, like all women, I'm wrapped up in a wonderful romantic movie. You know the type-the guy always says the right thing at just the right time, the stolen glances from across a crowded room, all the things that make us sigh. What girl hasn't indulged in chocolate, a cozy blanket, a Tom Hanks/Meg Ryan movie or Jane Austen novel, and sighed...thinking, "why isn't married life just like that? Why doesn't my husband say things like that?"
In the past week I've learned that reality can certainly be much sweeter than fiction. Ryann and I came down with the NyQuil commercial symptoms that came with this year's flu strain. After a week of sniffing, aching, stuffy head, and fever with mystery respiratory illness I'm worn out. I'm also amazed and a bit more in love with my husband.
Aaron took care of the girls (Rylee hasn't shown any symptoms yet, praise the Lord!), caught up all the laundry, did damage control on the house, played receptionist, made sure we stayed hydrated, and passed out Kleenex boxes and cleaned up used tissues with the speed of a cheetah. He also is now adept at dodging uncovered coughs and sneezes and spraying Lysol throughout the house and on all non-porous surfaces. I know I was a bit delirious but by the end of the week I could have sworn I saw him, silhouetted in the doorway, sunlight streaming behind him, one hand resting lightly on a tool belt filled with Lysol products, the other hand furiously disinfecting.
It was just like that moment when Carey Grant realizes that Deborah Kerr was protecting him from knowing and falling for a "cripple." But, he doesn't care because he's already in love with her and sees her for who she is-the woman he's in love with...sigh.
Yep, I had one of those epiphany moments just like in an "Affair to Remember."
Romance isn't about story book moments, movie fantasy in exotic places. Romance is when your husband grins at you and tells you you're cute even though you know your nose is red and sore and you smell like Vick's Vapor Rub. There is nothing more romantic than seeing your husband bend over the bed of your child, tuck them in gently and kiss their sweaty little foreheads. Romance is knowing you can empty the trash can, close up the bag, and know that he'll come through and take care of the rest. I've discovered a new dishwasher gives back so much more than a dozen roses. A sticky note found in the bathroom shower counts for at least two of those $4 Hallmark cards.
romance (verb) - to invent or relate romances; indulge in fanciful or extravagant stories or daydreams
I realized I don't have to invent or daydream. Our Prince Charming can work a ten hour day, care for his girls and wife, and I'm pretty positive he could totally slay a dragon if the need would arise...well, he does match up socks really well!

Flying under the radar...

We've been enjoying a low profile the past few weeks. Rylee is finally breathing clear, sleeping deep, and grousing whenever she doesn't want bothered. She's also back to being vocal when her feeding is due. We are settling back into her schedule-therapies, programs, appointments. She needs a receptionist just to keep her calendar straight! I peeked in on her over the weekend...long lanky "froggy" legs, massive amounts of blond hair, dark eyelashes dusting those chunky cheeks and hiding bright blue eyes, slow steady breathing...I still cannot get over our "Sleeping Beauty" and what an amazing little girl she is. Those on the outside looking in see only what she can't do, her limitations, her diagnosis. How thankful we are that God allows us to see her as she is-His creation, "fearfully and wonderfully made." A quick check on Ryann, our "Snow White," reminds me again of our blessings-I turn her right side up, brush back massive amounts of brown hair, dark eyelashes dusting checks that have lost their toddler fullness, long lanky legs, slow deep breathing with the occassional snore. I never get used to that mommy fullness of heart. How grateful I am for my girls.
We are fast approaching the date for Rylee's Rally, a resource fair in our community for special needs families. When we took Rylee off the ventilator she was three weeks old. Because of the severity of this disorder the only thing we came home with was Hospice services. Thankfully we had wonderful medical staff, and I have a big mouth and kept asking for more! Because we kept asking and hoping, we learned about Birth to Three, Make A Wish, Kidlink, SSI, Medicaid, Waiver/Title 19, homebound schooling, Family Support Funds, and the list goes on and on. I wanted to make sure other families go home from the hospital, knowing there are programs, funding resources, and people out there willing and ready to help. No other family should go home feeling overwhelmed and alone. I may have been the "instigator" for the fair, but there are two other mom's on the front line, digging in their heels making sure everything goes off without a hitch. It's been great learning from them, working with them, and getting to know them better. It's exciting to see vendors and agencies in the area becoming involved too. While this is our first year, we're all hoping for a great turnout and day for all the families. "Special needs" can cover anything from learning disabilities, ADD, ADHD, dyslexia, to Down's Syndrome, cerebral palsy, pediatric cancers, to chronic and/or life threatening illness, and anything and everything in between. Rylee helped us envision the dream, but each person involved has helped make it happen. Please pray that many families will be helped and that those involved (the vendors and agencies) learn that our children are not defined by their diagnosis.
While writing this and reflecting, it's hard not to hum one of the songs we heard during last year's Disney parade...(cue music) "Just believe and your dreams will come true..."

Super Bowl Sunday

Super Bowl 2007

Super Bowl 2008...pre-game grins.

We are thankful to bring January to an end and are looking forward to a healthy, drama free February. Rylee is recovering slowly but steadily. We went out to eat with good friends last Sunday night. While sitting there he and his wife mentioned the fact that just two weeks ago we were praying Rylee would make it through the night. Amazing that she has come so far, in such a short period of time. She has begun to act more like herself-grousing while I do her therapies, grinning at her daddy's voice, looking for Ryann and turning her head...and filling up dirty diapers! Yikes. (grimace) Aaron and I laugh when we realize that our main topic of conversation centers on the girls...I can remember vaguely when we discussed politics, economics, travel...sigh. Now we go out to eat on our "date nights" watchful of the clock, hardly daring to be gone more than an hour-we just can't seem to wait to be home with our girlies. Topics of discussion now? Rylee's bowel movements (alluring dinner conversation!), what crazy thing Ryann told one of us, and did we remember to lay out Rylee's Distat before leaving.
We've discovered more "tricks" while staying in PICU...When your child fills a diaper with a substance the same viscocity as the Valdez oil spill...you need to worry. Always take great care of and show gratitude to your nurses-they are the ones that hold everything (including the parents!) together. Try to be patient with the residents...they are learning too...then you can laugh about it later. There's a reason they call it "practicing medicine." Cafeteria food actually tastes good after four days of living on Coke and McGriddles from McDonalds. There's nothing like your own bed. Ten hospital pillows, when positioned correctly, can give ergonomic support viable for sleeping on the hospital pull out sleeper chair. Can't replace the support and encouragement of good friends and family. Your medical staff knows if you snore or drool in your sleep...and yes, it is possible to, like cows, sleep upright. A pediatric intensive care room has fifty whole ceiling tiles, sixteen half tiles. They make a suction catheter tip with a toothbrush-it freshens, cleans, and sucks drool! The emergency helicopter landings and take-offs are quite precarious to watch. Shasta colas kind of taste like real sodas...well, sort of.
While I'm discussing the hospital stay. Our NKH friends' kids all seem to have sympathy pains with one another. Please pray for Rylee's little girlfriends, Fiona and EllieKate. Ellie Kate is home now, but teaching her mom and dad that it's entirely too easy to pull out an NG tube. Please pray while they learn the "ropes" and that Ellie Kate will soon be back to eating by mouth. Fiona is still in the hospital with what started out as the flu. Tests are still being run, they've ruled out pneumonia and RSV already. She still runs a fever off and on. Pray the doctors will have wisdom, and that she recovers quickly. Also-while these hospitalizations are difficult on our NKH children and us parents, don't forget about the siblings. While they enjoy being spoiled by grandparents and friends, they miss their schedule, time with their sister, and the attention of their parents. Remember to pray for Conner (Ellie Kate's brother), and Maggie and Katie (Fiona's big sisters).
On a side note - our sweet friends the Laneros have begun a foundation in honor of their little "BabyCakes" Charles-Alexandre. The foundation helps raise awareness and financial support for NKH research, and will provide services to families caring for children with life threatening illnesses. The link can be found on the left side of Rylee's page. I hope you will visit and learn more about this wonderful organization-The Charles-Alexandre Lanero Foundation. Be sure to also check out all the photos of this handsome little boy. Sonia and Marc and Aaron and I have decided that Charles-Alexandre and Kaymaen are probably "shacked up" together in Heaven. You know how girls fall for an accent! (grin)
While I'm sorry about how we've meet all these exceptional families, we are so thankful for their knowledge, encouragement, and support.
I'm beginning a more active pursuit of designing special needs products. And while overwhelming, it's exciting to see things come together-knowing that Rylee is making a difference. Please pray that I can find appropriate funding sources, and that the people we deal with have Rylee's best interest at heart.
Aaron and I are scheduling our Disney trip. Everytime I pull up the website and hear that music, I tear up. I can't believe we've been granted another opportunity to make such special memories with our girls. Ryann can't wait to visit Give Kids the World again too. If anyone has any advice about Orlando hotels/resorts, be sure to let us know.
That's all for now. Hope everyone enjoys the Super Bowl photo. It's been a tradition that Daddy and his girls watch it every year. When a team scores, Ryann yells, "Flip Down" (translation-touch down) then stands on her head. We've still not figured out why she does this, but it began when she was one...and it's too cute for us to correct her! Rylee generally sleeps through the whole thing when Chad Pennington (Jets) isn't involved! laugh

Ryann's "flip down"

Fighting over the Doritos!

Rylee finally feel asleep right before the game-we didn't have the heart to wake her.

Thanks for checking in on us. It's still very humbling to know people care and take time out of their own hectic schedules to see what we are up to.