Need a Cure!

I know it's been too long since I last posted. As most of you are vacationing and playing, we keep busy every day during the summer, too! But I thought I would steal away from the chaos of summer break and share a moment of my morning with you. Earlier on Boomer's walk after Cam's therapy, Kassidy again talked about how great it would be if Aly could walk, talk, and use her hands. Many times she has dreamed about her sister being healed: A time when Aly runs into our room and jumps on our bed, awakening us and hugging us while giggling and singing. Kassidy accepts Aly and treasures her sister as all of our family does, but during sleep her mind shows her a different "place" where her sister is healthy. And although the love I have for Aly would not increase or change, I dream of a cure for Rett, too.

Can you please take a moment each day to vote for our worthy cause? It's free and it really only takes a minute. And we need a cure! The Pepsi Refresh Project grants money to the top two projects with the highest number of votes. With the awarding of money, research continues. Research that already has reversed symptoms in mice who have the MECP2 mutation. REVERSAL even in severally affected mice! I include partners of IRSF who pledge to vote for our cause in return for our votes for theirs. Once a day, everyday, please click on the link and vote for each one listed: http://www.refresheverything.com/search/?q=rett+sophias+diannah+skip.program.children+criger+scapini&ic=0&im=0 .

Thanks and have a happy summer, MR7

March in Some Family Time

Let's see...We've had a wonderful March, filled with a lot of family events: The beginning of March we "vacationed" at The Great Wolf Lodge for a night to celebrate an early seventh birthday for the twins. The very next weekend R7 took our Butterfly Princess to visit the butterflies at the Fort Worth Botanic Gardens and experienced a true God Moment. The third weekend ALL the Rumulys returned to Northwood Church for our Aly's Spring Debut which was followed by a lunch treat at McDonald's. Also, Mommy and four little Rumulys (well, three little and one teen) visited the Grand Opening of the Museum of Living Art "MOLA" at the Fort Worth Zoo and began Spring Break with so much fun! The warm weather finally has "sprung" and brought all the allergies with it.

Currently, our "feverish" Aly has been placed back onto oxygen (nasal cannula) along with an antibiotic, breathing treatments, CPT, and suction. We're hopeful to keep her home and avoid a hospital stay since we have the medical equipment she needs here at home! We're praying our March will exit and April will begin with our Aly feeling better!

Thanks for checking on us. We really appreciate all your prayers! MR7

A God Moment For Our Butterfly Angel

Yesterday after some debate about the "safety" (health-wise for Aly) of going into a public venue, William and I decided to take R7 to see the butterflies at the Fort Worth Botanic Gardens, an event that happens only every two years. (Click on butterflies for information.) All of R7 LOVED it.

It was such a delight to spend the afternoon in the tropical rain forest looking at butterflies. Being together as a family on an outing was extra special! Aly was so excited to see butterflies which happen to be one of her favorite things; she was all smiles even before we left.


While looking at the top of the rain forest canopy and all around the surrounding bushes and flowers, our family spied blues and reds and yellows. Butterflies flitted everywhere. Waterfalls enticed the twins to touch and splash. Mason ventured away and inspected closely any resting specimen. Ethan froze himself into a statue with hopes of becoming a perch for any trusting , multi-colored beauty. William taped video of our children enjoying this special treat while I carefully navigated Aly's wheelchair and snapped pictures. It was wonderful.

But Aly had the best time of all! While stopping to watch the different colors flying above our heads, our family experienced a moment that truly must have been God given, as declared by the volunteer who witnessed it with us. All of the sudden a splash of yellow fell from above, and a Citrus Swallowtail butterfly landed on its back, wings open and flat on the ground beside Aly's chair. Much to our astonishment, William and I gasped while Cam and Aly looked down at the helpless butterfly who seemed to die before our eyes. Knowing the rules forbidding any touching of butterflies or plants, William and I stood puzzled about what to do or how to help: The butterfly's position on the ground left it dangerously close to being stepped on by feet or rolled over by Aly's chair.

So as Will turned to catch the volunteer's attention who already was watching, I leaned down and offered the butterfly my finger which it grabbed, much to my surprise and definitely to my most-thankful delight that it was not dead. I carefully showed the giant yellow beauty to our butterfly angel who grinned and watched intensely as her new friend opened and closed it bright yellow wings entertaining and delighting her. Aly shared a special and rare moment with the Swallowtail who danced and flirted with her. And as fast as it all began, the butterfly flew away leaving the surrounding adults in awe of what had occurred. The volunteer told William that she'd never before seen anything like it, and it had to be "God moment" in her opinion.

A definite God moment for our butterfly angel will be treasured by all of R7! Stayed tuned and check back later tonight: I hope to post the video of the actual moment! MR7

We MUST Look To The Hills!

Please pray! Will's sister, Dawn, remains in ICU in Temple after being Careflighted from Round Rock yesterday. Angioplasty reveals a clot very near her brain, and it has become apparent that a clot caused the original stroke affecting Dawn's body on the right side. Praise the Lord that Dawn is breathing on her own and that she has some slight movement in her right leg. She remains unable to speak currently and must be awakened every hour. More testing will happen today to find any more clots and a possible cause. It seems unreal! Dawn is a 38 year old healthy and athletic mother of two school-aged boys. We'll continue to update.

We must look to the hills! MR7 (Click on title)

A Much Needed Reminder

After going without electricity for three days, spending a thousand dollars on a generator to keep Aly's medical equipment working, and all four Rumuly guys suffering from stomach virus, R7 is worn down and out! Also, I just received a message left by William's mom that his youngest sister, Dawn, has had a stroke and was being taken to a hospital in Round Rock. I have no other details, but dear friends please pray for Dawn, her two boys and William's parents.

Here's a much needed reminder; thanks Debbie for sharing:


“Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us.”- Romans 8:35,37

I'll update soon! Thanks for praying, MR7

Forecast: Sunshine

I just had to share our bright sunshine today. Oh boy! We missed Aly's smiles while she was sick...Goodbye cloudy skies; hello bright smiles! Notice that she's not on oxygen? Yes! Thank you to everyone for your faithful prayers for our family. Really, Aly's health is such a miracle and one in result of many prayers. Thank you, thank you! Praise the Lord for our sunshine! MR7

Home

Praise the Lord, we brought our girl home from the hospital on Friday! Thanks for praying; please continue to pray as we adjust to all the new medicines and additional medical routine. This picture is from Father's Day 2009; can you tell how much her daddy loves her?!!

Day 10

Yes, we're still here! We're exhausted. We've had sick kids at home. Aly is trying very hard to get better. Here are some pictures. And thanks for praying!
MR7

No News and Not Good News

Yeah. I am having so much trouble updating here on our blog because I find it so much easier and quicker to write on FaceBook. Some of you already know. Aly was admitted into Cook Children's Fort Worth on Monday and will remain there at least until Saturday. She is on oxygen and getting two intense hospital-strength antibiotics plus a strong steroid. William and I are trading off 24 hour shifts between the hospital and home. Thanks for your prayers for all of us. Check on us at FB or try back here. I will try to be more diligent to update here.

I thought I would include this wonderful poem by a fellow mom of a child with Rett Syndrome. It puts our life in a realistic perspective. Thanks for checking on us! And most of all, thanks for praying! MR7


I AM…(for mothers of special needs children) by Michelle Guppy

I am the little engine that did.
When on my journey in life, my tracks led me to a mountain-a diagnosis of (syndrome or disease) Rett Syndrome, I looked at it with defeat-thinking there was no way I could climb over it. I then pondered the obstacle before me, and I then said to my self over and over, ”I think I can, I think I can…” then I slowly started climbing the mountain saying to myself over and over, “I know I can, I know I can…” and then I made it over that ominous diagnosis and continued my journey. I am the little engine that did.

I am more devoted than Noah’s wife.
I sometimes feel overwhelmed in my “houseboat”-365 days and 365 nights a year, constantly working with and teaching my child. But when the storms of isolation and monotony become most unbearable, I do not jump ship, instead I wait for the rainbow that is promised to come.

I am Xena.
Real life warrior goddess of (syndrome or disease) Rett Syndrome. With my steel plated armor I can battle anyone who gets in the way of progress for my child. I can overcome the stares and ignorance of those without a disability in their lives-and educate them as to shy my child is the way he is, and why he does the things he does. With my sword of persistence, I can battle the schools to have them properly educate my child. Yes, I am Xena-and I am prepared for any battle that might come my way.

I am beautiful.
I have hairy legs because I get no time alone in the bathroom, and bags under my eyes from staying up all night with my child. The only exercise I get is the sprint from my house to my car-to take my child to therapy. Dressed up to me is, well-just that I had a moment to get dressed. They say that beauty is in the eye of the beholder-and so even on the days when I don’t feel very beautiful-I will know that I am…because God is my beholder.

I am the Bionic Woman.
With my bionic vision-I can see through the disability my child has, and see the beauty in her soul, the intelligence in her eyes-when others can’t. I have bionic hearing-I can look at my child when she smiles at me, and hear her voice say, “I Love You Mommy.”-even though she can’t talk. Yes, I am thankful to be Bionic.

I am Mary.
A not so well known mother of a Special Needs child who was brought here to touch the souls of those around him, in a way that will forever change them. And it started with me. By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life. Things like the joy of just living in the moment, the Peace of knowing that God is in control, never losing Hope, and knowing unconditional Love that the words cannot express, Yes, I too am blessed by a special child, just like Mary.

I am Superwoman.
I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger. Oh yes, without a doubt, I am superwoman.

I am Moses.
I was chosen to be the mother of a Special Needs Child. I may at times question whether I am the right “man” for the job-but God will give me the Faith I need to lead my child to be the best he can be. And like Moses, God will give me the small Miracles here and there, needed to accomplish my mission.

I am Stretch Armstrong.
A mom that can be stretched beyond belief-and still somehow return to normal. I can stretch limited funds to cover every treatment and therapy that insurance won’t. I can stretch my patience as I bounce from doctor to doctor in a quest to treat my child. I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends. Yes, my name is stretch. And I have the stretch-marks to prove it!!

I am Rosa Parks.
I refuse to move or waver in what I believe is right for my child-simply because my view is the minority, not the majority. I refuse to believe “what can one mother do?” But instead, I will write, call, and rally to the government if I have to, and do whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.

I am Hercules.
The Greek God known for strength and courage. The heavy loads I mush carry would make others crumble to the ground. The weight of Sorrow, Fear at uncertainty for the future, injustice at having no answers and the Tears of despair, would alone possibly be to much,-even for Hercules. But then the Joy, Laughter, Smiles and Pride. -at my child’s accomplishments,-balance the load to make it easy to bear.

I am touched by an Angel.
An Angel who lives in a world of his own. And it’s true. He lives in a world of innocence and purity. A world without hatred or deceit. A world where everyone is beautiful and where no-one is ugly. A world where there is always enough time. A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past. Yes, I most certainly am touched by an Angel, and in some ways, his world is better.

I am a true “Survivor” The mom of a child, who has faced, is facing , and will face, some of the most difficult challenges life has to offer. I am ready for the challenge and have God-given endurance to last until the end. Along with a sense of humor to cope with all the twists, turns, and surprises along the way. Oh, yes, I am a True Survivor and I don’t need to win a million dollars to prove it…

I am a mom of a special needs child, all the above, and so much more….
Some days I will want to be none of the above and just be a typical mom with a typical child, doing typical things. On those days I will know it’s ok to be angry, and to cry, and to lean on my family, friends, and church, for support. Because after, the most important thing I am, is human………

www.rettsyndrome.org prayer to care

Mary - Breath of Inspiration

When I became the mother of a special child, I found inspiration through Mary, the mother of another special child. Over the last decade the unusual task assigned to me sometimes has been too much. Many times I have felt inadequate to handle so much responsibility, and certainly I have been overwhelmed by the requirements of my days. Mary was given an overwhelming responsibility, too. Unlike people who study for their call in life (such as doctors, teachers, preachers, and politicians) and without important training which is given to people who apprentice (such as electricians, carpenters,shopkeepers, and soldiers) Mary was called and had to rely on God for everything.

Although, my special child is very different from Mary's, we have some things in common. Just like Mary, I did not study or receive training before starting my call to be the mother of two special children. Mary could not and I cannot rely on knowledge or training to carry the overwhelming responsibility assigned. And without a crutch, we must look to the Lord for everything. When Mary faced ridicule from being an unwed teenage mother because she had to be a virgin, she needed more strength than she or her family could give her. When traveling pregnant and "great with child" to Bethlehem in order to fulfill prophecy (unknown to her) Mary needed more strength than Joesph could give her. When delivering her firstborn in the secrecy of a stable and without assistance of a midwife, Mary needed the strength of God. And He provided!

"For with God NOTHING [He calls us to do] will be impossible." Luke 1:37


For my birthday a few years ago, I asked Dad to paint this verse over our family picture above the mantle. As I look at the little faces of my five children in the picture, I must look up to the verse used by God's angel to convince Mary of her calling and of the strength the Lord would provide for her to do it. Mary inspires me on the hard days to rely on the Lord for the task he has given to me as the mother of five children, including two who have special needs. I hope you see that you can rely on Him, too, as you enjoy one of the many gifts of this Christmas season. M&R7

Please enjoy: Breath of Heaven Click on the title for the song.

Reality and Wishes

Actually, I update often on Facebook, but it takes so much more effort to post on this blog. I constantly think of things to share, but usually I end up distracted by the demands of reality. I would much rather take time to write than to wash laundry or to cook meal after meal after meal after meal. I wish I had more time! Hmmm...Did I say, "Wish?"

Those of you who know our family know how we wish everyday for a Disney Trip to celebrate Aly's birthday each year! Wishes are magical in our house, but they're not to be wasted either. Why do I think that? Well in Disney's Aladdin, the genie will grant only three wishes to his master. Humph! My kids think wishes grow on trees! Okay! Yes, usually parents say money doesn't grow on trees, but I find myself correcting my children when they wish for frivolous things and "waste" one of our limited number of wishes. Ha! You know like when Kas wishes her brothers would let her play Lego's with them or when Mason wishes his teachers would not assign homework over the weekend. Ethan was determined to get a baseball mitt and he constantly wished that we would take him to Academy to buy him one.

I panic to think my children are wasting our wishes! Everyone hears me lecture, "If I had a wish, I would wish for something bigger, like a new van that fits Aly's wheelchair, for a wheelchair accessible bathroom, for everyone to attend CCA, and especially for a trip to Disney World to celebrate Aly's next birthday! My wishes are for healthy children who aren't vomiting or running fevers so we can go to church on Sunday. I wish for Daddy to have a good day at work where he will remain protected from job cuts and where at the end of the day he will feel accomplishment in spite of the overwhelming responsibilities.

Really, our family has been granted many more than three wishes! Some of the wishes have been small and some have been huge, but all have come directly from above! Recently on a quick run to Walmart, Daddy bought two baseball mitts, one for Ethan and one for a second player, whether Daddy or Mason. Some of you remember last Thanksgiving when our family found a great deal and bought Aly's new magic carpet (a hi-top extended conversion van) in which she rides with smiles and giggles, comfortable and safe in her wheelchair. Most importantly, Daddy has a job, which is a huge and unpredictable blessing in this local economy where municipalities are cutting budgets resulting in layoffs and pay cuts.

A huge ongoing wish of ours is sending our "healthy" kids to Covenant where Mason started his ninth year, Ethan started his fifth and Kas started her second; what a legacy made possible through the generosity of CCA scholarships and the provision of the Lord to bridge the gap between CCA's help and the rest of tuition! Almost three years ago, Make A Wish Foundation granted Aly a Wish Trip to Disney World and Give Kids the World Village for R7. The magic from that first trip inspired our desire to celebrate Aly's birthday each year at the place that makes her smile and giggle most! With this as motivation, Aly "fights" through illnesses more successfully resulting in Disney's "Wish" fireworks celebrating two additional birthdays and lighting up Aly's face and her big, beautiful smile.

But like I said: Our wishes have not been granted by a genie in a bottle! And certainly we have received far more than just three wishes! Also, it is important to realize that all good things come from God, but more challenging is recognizing that the Lord does not give us everything that we want. Hmm... We all understand not getting every frivolous thing like when my children sometimes wish for extra dessert, later bedtimes, no shower or bath tonight, and no vegetables with meals. Of course, it's hard not to get everything for which we wish, especially when the prayers focus on a cure for a child. It's hard to understand sometimes. Like when a family spends time on their knees praying, and the Lord makes them wait. Why doesn't the Lord grant our "wishes" right when we ask for them?

This to me becomes compelling evidence that God is who He says He is in the Bible. Why? How? Truthfully, it's mind-boggling but very simple. If God were made up in my mind, I would have wished for a genie who called me 'Master' and who granted my wishes when I wished for them. Instead, God is the creator and master. And yet in spite of being God, He allows me to call him Father and He calls me His child. He promises to takes care of me. He reminds me that I am not all-knowing. And even though I cannot have all my wishes, He is giving me good things because He gives only good things.

9."Which of you, if his son asks for bread, will give him a stone?
10.Or if he asks for a fish, will give him a snake?
11.If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
Matt 7: 9-11

Anyway, I wish you a wonderful Thanksgiving. Of course, I will post soon. M&R7

The Rett Monster vs. Aly Angel

Oh Boy! It's been a rough week for our Aly, suffering with unstable oxygen saturation levels,tachycardia, and now adding a persistent congested cough. At one point when we had Aly at the doctor and Nana picked up the children from school with Cam, the kids questioned if Aly was once again in the hospital! And as hard it is to see our precious girl suffer, we have been so blessed to keep her home with us through this tough week. Knowing that Aly could return to the hospital if things get worse, makes keeping her home seem like such a gift to be together.

What about this Rett Monster? Since October is Rett Awareness Month and it's almost Halloween, I must take this opportunity to share with everyone a little more about Rett Syndrome, the name given to the monster that plagues our girl and our family. I hope you've read this and this to become more familiar with the Rett Monster (click on this and this to learn more) but there's more I need to share:

1. There are four stages of Rett - Aly is in the fourth and final stage.
2. Rett can be caused by these three gene mutations, MECP2, CDKL5, and FOXG1 - Aly tests negative for MECP2 and has not had further testing.
3. The severity of Rett differs in girls and recently more boys are getting diagnosed with a form of these mutations - Aly has the most severe form.
4. Rett is NOT hereditary, except when it runs in families - Confusing, I know.
5. Rett is the MOST severe form of autism, although it may not be classified under the Autism Spectrum Disorder umbrella forever.
6. Rett WILL be the first REVERSIBLE neurological disorder - clinical testing has successfully reversed Rett symptoms in mice with the MECP2 mutation.
7. Rett actually does not kill; it maims - Aly suffers from the "process" of her body's deterioration making her lose skills and bodily functions; her brain remains unmarked but with atrophy.
8. Pneumonia kills some girls with Rett - That's why it is so serious when Aly is sick.
9. Rett does not mean retarded - Preferring to call it intellectual disability, many people are classified mentally retarded because they are non verbal and unable to speak. Check this out to amaze yourself about what might be going on in Aly's mind. (Click on this.)
10. Rett is a monster - Aly is an angel!

Tonight, Aly has started running a low-grade fever. We will see what this night might bring our girl, but the morning will arrive for all of us. We will defeat the Rett Monster some day soon; we pray selfishly that it will happen on earth before our Aly gets her official angel wings. If you're led, please consider a donation to help find a cure. (Click on donation and cure for information.) Thanks for praying for us. M&R7

She's With Me

This such a sweet glimpse of the love we have for our Rett Angel, Aly. Collin Raye was inspired by his angel, too. Please enjoy and think of October as Rett Month when we share with the world our desperate hope to find a cure! Consider a donation today (click on donation for information)that will help make a difference for the future of Rett Angels all over the world.

Collin Raye's She's With Me (click on blue): http://vids.myspace.com/index.cfm?fuseaction=vids.individual&VideoID=100182023


I will post soon with an update about our family. Thanks for your prayers; please keep them coming. M&R7

Just a year ago...

Last year I started this blog. My hope was to inform family and friends of our prayer needs and to show a glimpse of how life is for us. My first post was about Rett Syndrome and how it affects our Aly's daily life.

Since October is Rett Awareness Month, I wanted to share again with you about Rett. Rett Syndrome is estimated to affect 1 girl in 10,000 female births. That possibly means that every five hours a new little girl is born with Rett, although her family will not know something is wrong at first. Also, Rett Syndrome currently is classified under the Autism Spectrum Disorders (ASD) and for now is the only one with a known genetic mutation. So much is on the horizon of finding a cure to Rett Syndrome!

I hope to update soon about how Aly is doing and how Cam is adjusting to his new medicines. For now please read my original post about Rett and Aly. Also, please keep us in your prayers we still need them. M&R7

Hi All!

I hope everyone is doing well as half of October has passed already. October has been designated as Rett Syndrome Awareness Month, and I felt compelled to share with you what Our Aly faces on a daily basis. Days are difficult for our sweet Aly who is in Stage IV of this very debilitating syndrome which has taken away her voice and her mobility leaving her with a compromised immunity and in fragile health. However, her smiles are treasures to all of us in her family, and we seek to please her until she gives us a sweet giggle and smile. Aly finds pleasure in the most simple things like when her siblings sit next to her, like reading Angelina books, like watching Disney princess videos, and like taking a short drive or walk around the neighborhood. When our girl is well, she sleeps throughout the morning but awakens to spend time with our family when the rest of the children return home from school. Aly also works very hard with her home-bound teacher for two hours twice a week. Everyday, Aly takes many medicines to help with seizures, reflux, and her breathing. She also receives all of her nutrition through a feeding tube. On her hardest days, Aly might not smile at us at all, but her eyes still show incredible trust and love.

This is just a glimpse of Aly's life. It's my hope that each of you might be touched in a positive way by our Aly's sweet angel-spirit as we have been in her family. It's also our hope to find a cure for Rett Syndrome and reverse the devastating symptoms that plague Aly each day. This cure is not a lofty dream, either. Research is moving towards a cure and the goal is to realize it in five years. Please click on the links that explain everything in detail. When there is a cure for Rett Syndrome, many other diseases such as autism and Parkinson's will find remedy as well. And if you're able, please donate towards research.

http://www.rsrt.org/donors/face-to-face-with-Rett-Syndrome.html

http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=14&Itemid=375

Thanks for letting me share about our Aly. The months ahead present challenges for our girl as the weather turns colder and illnesses like flu, pneumonia, and colds begin to affect the health of everyone. Please keep her and our family in your prayers during the next three months. We whole-heartily believe that if we can keep Aly healthy and alive that she will experience healing with the cure of Rett Syndrome.

It's in the heart of God and in the hands of man,
Mindy & the Rumuly 7
William, Mason-13,Aly-10,Ethan-8,Kassidy-6,and Camden-6

Home, Sweet Home

Yes, Aly is home, sweet home! Thanks for all of your prayers. Aly has many medications and breathing treatments. Our new medical routine at home has an extensive schedule, but we're home. Please continue to pray for Aly's health and for our stamina. This hospital stay was short, and we hope to keep Aly home without complications causing her to return to the hospital any time soon. We'll update later. For now, we're just happy to be home, sweet home, M&R7

Update

Thanks for your prayers. Aly is stable in isolation at CookChildren's Hospital. She has the flu and pneumonia. Mason came home late this morning with fever. Will and I are trading off 24 hour shifts between the hospital and home. Obviously we had to cancel our trip to the Rett Center in Houston, which I was told has been affected by the flu themselves. Thanks for checking on us. Thanks to Mom and Dad for helping with everything. We'll update as we have news. Please keep praying for our stamina and especially for our family's health. M&R7

Hard-Knocks Life

So now that I have set something straight, let me set something else straight: We desperately need and are deeply thankful for every one's support and sweet encouragement to get through our "rougher than usual" rough times in this hard-knocks life! It is through your messages, thoughts, and prayers that we feel less forgotten, abandoned, and isolated. For us, not having a normal life means not having social opportunities, and it means not traveling to visit family, and it means not having the freedom to do certain family activities. It means our money and time goes to therapy, doctors, and testing. It means balancing life around an intense focus on our children's disabilities in order to help them get better and keep them safe with an equal balance to appreciate the enrichment and enhancement that these two special children bring to our family and others. Really, it's an impossible task to balance the two extremes, but it's completely necessary in order to survive the difficulty of this extreme life!

So please send us your well-wishes, thoughts, and prayers as William and I struggle to provide a balance since the "hard-knocks" continue to off-set the equilibrium lately as two of our children continue to face new and multiple medical problems. For an easier way to update, I just will list some of the current issues our family is facing:

1. Aly has increased seizure activity resulting in daily grand mals.
2. Aly still has tachycardia and the new medicine has seemed to worsen the racing of her heart.
3. Aly is losing clumps of hair. We think it's due to the thyroid condition. We finally see the endocrinologist on Monday.
4. Aly has lost some weight which might be related to the recent change in her formula. A change caused by the company's recent decision just to stop manufacturing the milk since it was no longer profitable after more than a decade.
5. We plan to travel for one night to Houston with Aly and Cam for the Rett consultation. We still have to work out travel plans and figure out expenses. Mom and Dad will keep the 3 healthy CCA Rumulys.
6. Cam is transitioning onto the seizure med which has meant some increased activity during the night and grumpiness during the day. He has been diagnosed with seizure disorder or epilepsy.
7. Cam also has Periodic Limb Movement Sleep Disorder which results in his body awakening him multiple times during the night. His seizure med might help this condition and Melatonin is also an option.
8. Cam has an ARD with the ISD on Tuesday to begin speech services recently offered by the district through Proportionate Share Funding. We're considering a possible placement in a blended kindergarten although the district might continue to offer only a self contained classroom instead.

It's really hard for me to keep everything straight about our needs. I am sure that I left off something. Usually, we work through the most pressing issue until another one needs more attention, but lately multiple issues are demanding our consideration, thoughts, and decisions. Of course, flu and cold season is here, and our Aly needs safety from exposure as we attend multiple medical appointments in hospitals which are filled with numerous cases of flu. Obviously, we still desperately need every one's prayers! And we treasure encouragement because we're feeling overwhelmed by the "knocks" of this hard-knocks life, M&R7

Let's Get Something Straight

A friend said a funny thing to me the other day: She suggested that all of these "trials" might be in result of William and me, possibly a prayer to be closer to God or a heart-felt desire to understand better the mercies of the Lord. Maybe you've heard or even have said yourself, "Don't pray for patience as it is sure to be tested!" And maybe in an attempt to better explain God, you might have said, "the Lord never gives anyone more than she can handle," while thinking secretly in your mind that this might protect you from having extreme problems (such as your own children with special needs) because, "I'm not strong!" Humph...

So here I go in another attempt to be transparent on my blog. Please allow me to express myself on this issue.

First of all, the Lord is not testing me and William through our children's disabilities and medical issues. The problems that we find difficult in our life are actually the same that most people find difficult in their everyday lives: finances, marriage, and other self-centered attitudes like stubbornness,unforgiveness or jealousy. Those areas of my life are definitely where the Lord challenges me with His rules, His allowance of temptations, and the reminder of His Word for ways to deal with His "testings." Meaning that He takes my desires to be closer to Him and He shines a spotlight onto the things that distract me from entering into His Perfect and Holy Presence. Doing this answers my request to be closer to God because His Holiness requires me to leave behind all the things that disgust Him, like my personal problem of anger, thus keeping me out of His Presence.

Let me reiterate: The Lord is NOT using my children's disabilities and medical problems to test or tempt me and William. In fact, my experience dealing with the unusual and extreme special needs of a child for the last ten years, plus adding a second set of unrelated and equally upsetting special needs of another child for the last four years, has shown a pattern of love and provision not a pattern of love and correction. In actuality, the last ten years The Lord has loved and "held" our family through all these major medical difficulties two of my children face in this world; a world in which we must live where bad things have happened ever since Adam and Eve ate that apple and were sent out of the Garden of Eden.

Allow me to add firmly: William and I are not amazingly strong, and the Lord knew full well that we would be brought to our knees from the time we became parents of our firstborn (healthy) son! Relying on our own strength has never been adequate or reliable, even when we had one child. And instead of it being about our strength and ability, it quickly became about the Lord's provision of His own strength and ability! While dealing with this intense grief over, overwhelming fatigue from, and immeasurable responsibility of caring for two children with medical disabilities, the Lord has provided His grace to get me and William out of the bed each morning even though the nights are usually just extensions of meeting the daily special needs of these children. Oh! And let's not forget the "normalcy" our family must establish for our three healthy children. In spite of always sacrificing normalcy as required by living in a family with special needs, these three children are well adjusted and quite wonderful which is also by the grace of God!

So let's get something straight: William and I did not "cause" our children to have disabilities because we pray. God the Father did not find us particularly strong so he gave our children special needs. Instead of remaining uninterested and unreachable in heaven, the Lord reaches out to us and has His Hands all over our family even though we feel overwhelmed and depressed about these medical concerns.

And here's a hint: When you see our family or those like ours, it's okay to be dumb-founded and clueless. Don't try to "fix" things. If you can pray with real dependability then offer. If you cannot remember to pray then don't offer. Otherwise, just say "hi" and smile. It's okay, really. Remember, we have a Saviour already; there's nothing else in this world that will make us happy.

Thanks for letting me get something straight. I'll update with all of our news later. For now, we're letting things settle down, M&R7