Okay! Some of you are thinking: What has gotten into Mindy that she has made three postings in ONE week?! Well, I just have to share the things that have been gifted to me this week, whether the links in the previous posting or this amazing video. Please feel as affected as I am by this. Please share this with everyone:

The R Word: http://www.youtube.com/watch?v=CoqaNG0Ozqc

Never forget the reason(s) to never use the R Word again. M&R7

Some amazing links...

As a new blogger, I am interested in other people's blogs especially because I want to learn new technical tricks to add to my own blog. What I have found astounds me, and it's not just the technical savvy of people that impresses me either. Another part I find fantastic is the camaraderie of bloggers and their readers. These writers share their very personal thoughts, feelings, dreams, and prayers with readers whom they have never met or might not ever know. I have four new blogs that I am following closely and that are affecting me deeply. These people are amazing and certainly I share some of their special concerns. I wanted to share with you their links: MckMama, CFHusband, Bring the Rain, and My Rett Body.

They are inspirational with how they genuinely share their innermost selves. From their own sincerity and without even knowing me, they are challenging me to become translucent in my own blog and not just funny, entertaining, or anecdotal. Somehow, The Lord has brought me to these blogs.

Please, join me as I pray for Stellan and his family. M&R7

"WHY"

...Need I say more? Everyone has experience with "WHY" whether you or your children ask or say it. Oh boy do these three little letters represent far more than they spell!

Anyone who knows Cam knows how often he uses "why." Once a lady in Target heard him ask me "why?" five times in just as many seconds. She exclaimed with a sigh, "UGH! My granddaughter exhaustively uses 'why' over and over." It's funny to think that I am thankful that Cam asks why, even though he asks it all the time. It shows me that he is thinking about things and that he really wants to know more about "why" we do the things we do and "why" we go to the places that we go. I try very hard to answer him every time with simple but true answers.

One of our very young therapists answers Cam's "why" with, "...because I said so..." I always correct her gently by adding a simple explanation for Cam, "this will help you get stronger," or "your fingers need to practice," and "yes, it's hard but Cam can do hard things." These answers satisfy his curiosity until this crazy world presents another "why" question that he needs to ask. I learned it from my cousin when her first born son, maybe two years old back then, asked "why?" continuously. She always answered him. Her answers were not detailed and never were they complicated, always said with a tone of "matter of fact" and never with frustration. I am glad that impressed me and stuck with me. Cam has a lot of "why" questions because not much about his life is ordinary or "normal."

It really depends on how "why" is used. Most of the time, "why" is an innocent question. But sometimes, my children use "why" to be defiant when they are disciplined, especially when substituting it for the expected and respectful "Yes, Ma'am." The word "why" can be a call for justice, too: "Why can't I stay up late when Mason gets to?" In our house, "why" is difficult because it's not spelled phonetically, and our new reader has worked to memorize pronouncing its strange spelling. Kassidy wonders, "Why is there an 'h' in why?" Hm...

Even as adults, Will and I ask, "Why?" Sometimes we have used it in happy times of awe like when our oldest son loves to study physics instead of playing outside and especially when the doctor told us there were TWO babies at the twin's ten week sonogram. When Ethan was born, we were filled with joy and relief, asking why he was so healthy despite my sick gallbladder plaguing me throughout the pregnancy. More often, we have wondered "why" when struggling with the on-going obstacles challenging our children with special needs: Why did Aly get this rare and untreatable Rett Syndrome that for days and days keeps her too weak and sleepy to enjoy even an hour with our family? And why did the doctor not run tests and treat the tethered cord indicated by the sacral dimple marking Cam's back as current medical protocol requires, allowing many of his organs to become permanently and painfully damaged and creating a lifetime with disabilities?

In our prayers, there have been many appeals to God when the one and only word we could manage to utter has been "why?" Prayers without other words rely on the Lord's ability to read our hearts through our question, our anger, and our fatigue. Why?


WHY = "Oh Lord God of my salvation, I have cried day and night before thee: Let my prayer come before thee: incline thine ear unto my cry; For my soul is full of troubles...(Ps 88.)"

A gentle and simple answer = "Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ (2Cor 1:3-5.)"


Even before Adam and Eve left the Garden and at the beginning of creation, Plan A included salvation and comfort. So as hurting people ask the basic question, "Why?", the actual solution is the answer: Jesus. "I will sing of the mercies of the Lord forever: with my mouth I will make known thy faithfulness to all generations. For I have said, Mercy shall be built up forever: thy faithfulness shalt thou establish in the very heavens...(Ps 89.)"


"WHY" These three little letters represent more than they spell...Need I say more? Why not have a good week? M&R7

Phrases...

Finally, I have a moment to spare. It seems the minutes fly into hours, hours into days, and days into weeks. This morning our entire crew attended church together for the first time since the end of October. We enjoyed seeing all of the familiar faces, especially the ones belonging to our lovely cousins. Ha Ha! I must admit that the best phrase of the entire morning was, "Yes, we're so happy to be back!" and "Hallelujah, Our Aly has stayed healthy during her "hibernation" this entire season of flu, RSV, and pneumonia!" Thanks to all of you for your prayers! She was so happy to be back with all those loving angels who care for her in the Joy Zone!

We would have made our debut last week, but Mason ran fever. His least favorite phrase became, "Mason, no school for you; you're running fever, again!" He's much better now, especially since he finished up all of his missed work this week and was granted a special sleep-over at his friend's house on Friday night. His favorite phrase was a silent one as I handed him the phone when Jonathon called and I was shaking my head yes to spending the night!

A funny phrase that we love to hear is from Cam, "I hun-gee (hungry), Mommy!" But a popular phrase that lately depicts all of the lost teeth that are flying out of my children's mouths might remind you of a familiar Christmas carol for it seems that all the three little Rumuly's "want for Christmas [their birthdays] is their two front teeth." Kassidy was hilarious about her twin's first lost tooth when he would NOT open his mouth for her to see. She has experience; she has lost two teeth recently. She repeated, "I do not believe it until I see it!" Cam finally opened his mouth for Ethan to look which confirmed the fact that he had indeed lost a tooth. The next morning, Cam exclaimed, "I got co-n (coin)," when he saw what the tooth fairy had left for him.

Ethan and Mason laugh and joke using many silly phrases. Sometimes William and I cannot stand their craziness, mostly because it's nonsense to us. But Ethan speaks in strange ways with his fellow second grade friends, too. He and Jared even have crazy names for each other, "Mwasta Bwebe" and "Darth Bwebe;" note the familiar Star Wars names with the very silly sounds added.

Even Aly Sue has favorite phrases. Although our girl cannot speak, she has clear ways to communicate to us what she needs. When she is wet, dirty or just plain tired of being in her chair, she coughs and clears her throat until Ms. Linda turns her chair towards her room when she promptly "kicky feets" and smiles. She also loves any phrase involving words like Disney, fairy, or princess. One early morning after our trip, I was telling Ms. Linda a story in which I repeated "Disney World" several times. One minute earlier my sleepy angel could not be awakened by my kisses covering her face, but "Disney World" caused her eyes to fly open, curled up a large happy smile, and had her lifting her head as if to tell me she would eagerly get out of her bed for another day at her Magic Kingdom. Seriously while on the trip, this girl allowed me face privileges for sunscreen!

Hmm...Phrases like "I love you" can be heard throughout our house, too. But one that the children find funny is when William tightens his diaphragm to access the low voice of Gaston (from Beauty and the Beast) saying, "You WILL marry me, Belle!" My response is not what you might expect but true to character, "I will NOT marry you, Gaston!" HeHeHe!

In our house, lots of times, "I'm sorry" is forced as is "You're forgiven." Certainly, "Excuse me" should be used more often. Cam joins his brothers and sister, saying "S, er (Yes, Sir) to William. Usually, everyone is generous with "Thank you." And after two months of hard work to fix our house, Dad's happy phrase showed his relief of a job well done and finally finished, "I'm done with everything on your list!" Hooray! And a big, "THANKS, Dad!"

Truthfully, we all have favorite phrases and familiar terms. Every weekday morning, our house hears a sigh of relief and an eager "hello" as William or I greet Ms. Linda into our home for the day. The kids love to hear "snack time" or "time for Martha Speaks." I am sure William least likes to hear from any of his family, "I am tired;" although he never complains. I bet most mothers of young children will agree with my favorite, "It's time for bed!" and "Goodnight, little honey."

Have a happy week, and share some happy phrases this week. I'll try to do the same, especially as our family looks towards Spring Break at the end of the week. Happy phrasing, M&R7

Quick Update and Prayer Request

Howdy! I hoped to make the first entry after the trip two weeks ago, but time has flown at warp speed. Keep looking back; I hope to post about our trip soon.

We need prayer! Mason has had fever for three days. The doctor ran a flu test and strep; both came back negative. It seems he has a virus. We have quarantined him. Hopefully, Aly will not catch it. She is having increased seizure activity and the neurologist is weaning her off one medicine and onto another. We hope it will not be a tough transition with increased seizures and fatigue.

Thanks for checking on us. Thanks for praying for us. I'll update soon, M&R7

Hectic Life Meet Your Match...Disney here we come!

Families of friends have busy schedules! Some of you work, volunteer, and have hobbies in addition to maintaining your busy family's commitments and extra curricular activities. Everyone "runs" from one chore to another errand, with hopes of crossing off something on the long To-Do list. At my children's school, I encounter moms who attend class parties and field trips while also substitute teaching and organizing class activities for their additional children. It amazes me!

William is so good to remind me that there are many reasons that I fall into bed at night exhausted from my day, too. Although I am not paid by an employer, I work the full time jobs of two over-worked employees. I "appear" occasionally at my children's school; however, my name can never be written on the list for room parent volunteer as my family situation is reliably unstable and unpredictable. Since my errands and To Do list are never ending, someone might think the extra curricular activities of my five children keep me busy, but the reality of our lives meeting the various needs of two special children keeps our healthy children's commitments limited to homework and playing together here at home. Our phone rings "off the hook" sometimes, but usually the endless (and sometimes less than productive) conversations with doctors, nurses, therapists, insurance, medical supply companies and the pharmacy keep me busy. Don't forget, we also have all the regular stresses of life, like bills, broken potties, and taxes.

Let's add all the responsibilities William has at work, a job that keeps him running throughout a ten hour day (at least) until he comes home only to return to work-related projects for another three to six hours each night after the children go to bed. The level of exhaustion between the two of us is insurmountable and overwhelming. Truthfully, we are just plain tired without any energy left even to allow depression. A typical day begins before the sun rises and ends late into early the morning hours (midnight,1AM,2AM?) unless our family is healthy, and I fall into bed after Aly's last milk feed ends around 10PM. Even then, William's head rarely hits the pillow before midnight as he faithfully attempts to meet deadlines.

Having said all of that, we treasure our time together because no one can predict for how long our family will remain intact as Our Aly might be called to be with Her loving, heavenly Father who is waiting patiently to be with her, too. And although our wishes would really be for all of our children to be healthy and normally developing, we yearn throughout the year for Aly to get her wish to return to Disney World for her birthday. It's the happiest place on earth where all of the stresses of our real life are magically postponed and forgotten for ten days! AHH! Short of a cure for Rett Syndrome and Tethered Cord Syndrome, it's only in Disney World where our family feels "right" and "normal" because everyone in the Magic Kingdom is special whether princess, pirate, or mouse. It's the place where our girl is a celebrity and our family gets special "perks" just by being with her. It's where fireworks blast in honor of Aly's birthday as required by the level of emotions felt by her family living with her and loving her, thankful for time to be with her.

The magic continues throughout our trip. It's where Cam gets to play all day without attending therapy; it's where Daddy has "no work,no work" and Mommy isn't running from one crisis to another. The children have no homework and stay up all hours to have fun. Our kids, okay all of us, devour all kinds of yummy foods and dessert every day/night. The place is filled with our favourite music. The wonders are extravagantly sighted everywhere. Let me be clear:

Hectic Life Meet your Match...Disney World Here We Come!!!!!!

The adventure begins. The magic carpet lifts off Monday morning, and return landing isn't for ten glorious days! "A dream is a wish your heart makes." Here's to big wishes and dreams coming true; here's to Aly's tenth birthday! Happy Disney days from M&R7

In Certain Circles...

This has been a very busy weekend! Kassidy attended two birthday parties of fellow kindergarten students in her class at CCA. The first was "Spa Day" where 13 little girls under the age of and newly aged six were treated to facials and nails with the help of several adults. The funny saying for the morning was, "Just relax and allow yourself to de-stress." I couldn't keep down my laughter at the absurdity of a five and six year old needing to release stress. Ha! And although the party was a hit, I honestly needed a Spa Day by the end of all the pampering. The second party included the five boys in Kassidy's class at Pump It Up which essentially is a brightly painted warehouse filled with large inflatables. These kids had a blast jumping and jumping! As we pulled away from the second party, which also offered pizza, cake, and soda like the first party, Kassidy said with a sigh, "I sure hope that the mailman doesn't bring anymore party invitations for a little while." I had to agree with that tired little girl!

While attending these social events with my sweet, five year old daughter, I visited with several Moms. Some of these ladies did not know me or my family. I enjoyed visiting with people and sometimes had the most funny conversations. I learn the most about people when I remain incognito, which means information is not revealed about my identity as the mother of five including two with special needs.

Some Moms love to "drop names" of the people running within their circles, like popular preachers or somewhat notable musicians. I smile when I hear these wonderful stories, but I have another scenario playing within my mind, deep within my heart. You see, I run in the most amazing circle; although few people know the names of the sensational people I am privileged to see. It is like being a member of a very exclusive private club where membership requires far more than any Mother or Father would voluntarily give to join. It's a club where most members remain for life although a precious few get to leave when their membership status changes with the cure of their beloved. The world would not recognize them, but the "famous" people in this circle include children and adults, some with noticeable outward characteristics and all with life-changing challenges: Luke who has Fragile X and autism; Libby with heterotaxy syndrome which includes complex heart defects, asplenia (no spleen), and intestinal malrotation; Connor who was born at 22 weeks gestation; and many more families who live daily with overwhelming obstacles. Membership requires doing things you never wanted to do, and pushes each participant way over the limits of her abilities. However, it rewards, too, as meeting and "rubbing elbows" with these mostly unknown celebrities always leads to inspiration, warmth, acceptance, and a deeper level of self. I have two living under my very own roof! Wow!

Then at the party shortly before anyone reveals my "true" position in life as the manager of five fabulous children including the two who are secretly famous, some Moms share how stressful and overwhelming current circumstances are making them feel very unhappy or unsure. In some cases, the state of the economy and current events might be unsettling. At the forefront of concerns is the stability of employment and providing for her family. Some confide that marriages are "rocky" at best. Or some have frustration over the unwelcomed, continuous misbehavior of a mostly healthy child. It seems all of the normal problems of life like stomach virus and over-scheduled calendars can hit hard all loving Moms, no matter how many children. I commiserate as my status does not protect me from any of these realities, either.

It never fails: Someone asks a question and my circumstances are revealed. It seems looking into my "Circle" temporarily helps mothers change focus from current worries to clear vision of the people they love, creating the need to hug and kiss. My circle of friends is magical. For those on the outside looking into it, feelings of thankfulness and emotions leading to tears can be the result. And although the names of the members remain mostly unknown, this club hosts the most inspiring and most gifted people: People who are the most vulnerable yet persevering. People with such huge obstacles yet overcoming. People who are most dependant yet so dependable. People who are the most challenging yet the most lovable. People with bleak futures yet shining brightly.

My Goodness! You can see why this circle is more than name dropping and a list of "who's who," for the people within it make such an impact. Anyway, it was such a busy weekend. I'm sure the week ahead will be as busy. "The Lord is the One who keeps you safe" (Psalm 91:9.) Have a good one no matter what happens. I hope to do the same. M&R7