May your burdens be light

I received this email from my sweet friend Alexis after she read my latest blog entry "Preparing for Kindergarten"...as an insight to our story (and our life), please read my response and know that we make it through because of friends like this.
After all the tears (thank God for Cathy sending over another dinner...perfect timing) I surprised the boys and together we all made chocolate chip cookies...seizing the moment.

Oh Cami,
I can't imagine the emotions you are feeling right now and ever day. I wish I could lessen your burdens.The Burden that you have is one Natural Condition. In my opinion it is one of the hardest to bear because we do not cause or Ask for such burdens to be placed on our shoulders. In a talk by Elder L. Whitney Clayton , he states " That your burdens may be light." and says the following;
No matter the burdens we face in life as a consequence of natural conditions, the misconduct of others, or our own mistakes and shortcomings, we are all children of a loving Heavenly Father, who sent us to earth as part of His eternal plan for our growth and progress. Our unique individual experiences can help us prepare to return to Him. The adversity and afflictions that are ours, however difficult to bear, last, from heaven’s perspective, for “but a small moment; and then, if [we] endure it well, God shall exalt [us] on high.”1 We must do everything we can to bear our burdens “well” for however long our “small moment” carrying them lasts.
Burdens provide opportunities to practice virtues that contribute to eventual perfection. And [become] as a child, submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon [us], even as a child doth submit to his father.”2 Thus burdens become blessings, though often such blessings are well disguised and may require time, effort, and faith to accept and understand.

I know that burdens are not meant to hinder us but to create growth and blessings. I know that heavenly father wants what is best for us and that is not always created by thoreless roses and merry-go-rounds.

I share this with you Cami, Because you are Goddess of your Heavenly Father. He loves you so much and he know that if anyone can make lemonade out of lemons it would be you. He knows that you are exactly what Trey needs and that you are a loving and supportive MOTHER BEAR. He knows that you will fight and LOVE. He know that you will always do RIGHT.

When you were over the other night I could feel your stress and see the anguish in your eyes. I know that you are suffering inside, silently. I wish you didn't have to endure this great trial and pain. I want you to know that the Lord is by your side. In a blessing that I received once it said. "do all that you can do with your trials and burdens and when you can do no more, then hand them over to the lord and he will do the rest." I think that you Cami Lane are AMAZING. You are amazing with Trey, with all your boys. You as a mother deep inside know what is best for your boys. You will always make the right decision. Don't question yourself.

I hope you know how much I love you and cherish our FRIENDSHIP! YOU ARE AMAZING and YOU can ENDURE this. You have the STRENGTH inside you Cami. YOU REALLY REALLY DO! The STRENGTH that you have Cami I can compare to nothing else but the strength of our Heavenly Father who sent his son to this earth to SUFFER for US.

LOVE beyond MEASURE
Your Friend.
Lexi
____________________________________________________________________________
Lex,
I can’t even reply there are so many tears in my eyes…thank you! Thank you for taking the time to write, for noticing my pain and for stopping to share your feelings.

I read over and over again how my pain will only lead to greatness but I just can’t seem to put my arms around such when I am living this horrible nightmare, enduring this great pain, witnessing this deep hurt. I read what you wrote and I took it all in and again I thank you.

My blessing is that I have been given the gift to take nothing for granted, not a day, not an accomplishment with my children, and for that I am thankful. But the daily suffering sometimes feel’s like more than I can handle…the day ends, I fall asleep…the sun comes up and the journey begins again. Everyday is filled with smiles and tears. The moments that made me smile are forever etched in my memory yet the moments that brought about the tears seem to linger, they linger at least until the next smile and then I forget about the pain for that moment and thank God for that blessing, but again, the pain comes around and again the concern’s hover.

My heartache doesn't come from my pain but from the pain I fear Trey will endure. I want to save him from all of it…EVERY SINGLE BIT and it kills me inside to know that I can’t, in even the slightest way (esp. when he’s away from me). I dread that day when the questions come, when he asks me why, when he is brought to tears wondering what made him deserve such a fate. It will be in his face daily, from his brothers to his friends all doing things he could only dream of. Just think of a time when you were so sad because you felt as if you didn’t fit in…it may have only happened once or twice but you still remember it, now multiply that by a lifetime.

I pray that God has made Trey stronger than me, that his confidence will be so much more than mine and that his outlook will be taken from a different perspective because he’s never known better. This throbbing in my heart can’t be put into words, this “small moment” feels like forever and it’s only been four short years. Nothing seems fair, nothing feels right about this and as any mother who has been dealt such a hand can attest, nothing is as it was planned.

I have been blessed with three incredible boys, looking at them, knowing it could be worse, my burden is lightened. I will learn only because I have no choice but to accept this fate...that I will never, ever understand.

Again, thank you for your time and friendship!!!

Love ya Lex,
Cami

Preparing for Kindergarten

With a deep sigh I drudge forward, not knowing if I'm doing the right thing or not and not knowing until possibly after the fact what the best choice would have been.

I recently had a meeting with Trey's school physical therapist for an evaluation and a recommendation for Trey's future in the public school setting. The summary we received after 6 months of preschool is as follows:

Trey exhibits functional motor skills that allow him to access the classroom and campus. He does need closer supervision at times on the playground than other students, due to his cervical instability, but otherwise he plays appropriately on the playground. He does have a tendency to have "bad" motor skills days and may require classroom staff to supervise him more. He will require more supportive seating to more effectively perform fine motor skills tasks and class projects. Trey is aware of his limitations and will compensate for those limitations as they arise.

This is the second recommendation we've received from Trey's teachers that he be integrated into the public classroom setting. We still have an IEP meeting with all those educators that will determine Trey's needs and give their final recommendations but from the looks of it, they all seem to see no reason why Trey wouldn't go to Drake and Broc's school next year.

Mike and I are so torn. We want to do the right thing by Trey and make sure we are making the best decisions for him but at the same time, we would love to shield him from any undue ridicule or pressure that the public school setting might produce. Is there such a program where the parent could walk every step with their child to keep them from harms way??? Because I would like to sign up.

So back to the meeting with the PT, I was taken completely off guard when the therapist informed me that Trey knows that he is different and that he doesn't like when he is told to do things differently than his peers as he would much rather just blend in with the crowd.

I know the questions are just around the corner but I had no idea how soon. I am scared to death that I won't say the right thing or that I would say too much or maybe even not enough...I will take the burden any day but the day that Mike and I have to share the pain with Trey is the day I will die inside. The older he gets and the more his friends are doing, the taller they are getting and the activities they are performing that he can't only brings me closer to having to explain to my baby "why". I don't think I will ever be ready for this day, never ready to see the pain in his eyes and never, ever able to help him understand because I don't and never will.

Kindergarten registration begins in two weeks. I cried when I sent Drake and Broc off to their first day of kindergarten, I will lose a piece of my heart when Trey walks through those doors...this will be one of those days that I will pray for God to carry me.

Minnesota Schedule

We just received the "okay" from Dr. Whitley to change Trey's bi-annual (6 month) check up from March to June. Our family is throwing a 90th birthday party for my grandma at her home in MN this June. So instead of having to incur the expense of traveling back and forth to MN in March for Trey's check up and then again in June for the birthday party, Dr. Whitley agreed that one trip would be fine for both. So far we have meeting's with Trey's geneticist, pulmonologist, cardiologist, orthopedic, and endocrinologist. We are hoping that Trey won't have to meet with the neurologist this time since we no longer have concerns in this area. We are also hoping that we won't have to see doctors for Trey's eyes and ears in MN as we are very happy with these two doctors here in AZ and feel confident with the care we are receiving in these areas...I guess that will be determined after our initial meeting with Dr. Whitley. We are awaiting an email back to see if we could meet with a PT and an OT during our visit. I would love to see how Trey is fairing in comparison with other MPS patients in MN since the specialists have so much more data and patients available to them there. If all goes well we will meet with Dr. Whitley first thing on a Monday morning and then again on Thursday with all other appointments happening in between so that we can drive up North for the birthday party by Saturday.

*just a picture I love of the boys*

Trey's Treasure Chest for Hope Fundraiser is February 27th at the Tempe Mission Palms Hotel. Tickets are only $40 per adult this year. The price of the tickets goes directly for the event and food, so unused tickets do not benefit Trey, we need smiling faces to make this event a success!

Thank you as always for your continued support, concern and prayers for our family.

Cathy (Lane) Angst

Another Garage Sale

We got very lucky that that weather cooperated with us in order for us to pull off a garage sale this past Saturday. Cathy and Bryan gave everything they made (as did their nice neighbors who contributed a bunch of items)from the sale of their items to Trey's medical account. The best part of the entire sale was to watch people haggle over a quarter for an item here and there. But... Bryan had made a jar with Treys picture and flyer taped to it with a big "DONATIONS" sign on top and as soon as these same people saw the jar they would throw all their change or even a dollar or two into it without a second thought.
Thank you Bryan, Cathy, their neighbors, and Mike for doing a great job with the sale. Drake, Broc, Trey and I were told to bring the donuts and we must have done a super, great job because everybody ate them all up.

Yes Sir Jackets

Trey and I were dropping off garage sale stuff at Cathy and Bryan's when on our way out Trey points out to his Uncle Bryan that he has his "yes sir" jacket on. Bryan tells Trey he has a "yes sir" jacket too. Bryan get his jacket for Trey to see and for a good five minutes the two of them compare patches on each of their jackets. Bryan tells Trey that when he gets bigger he can have his jacket, Trey's response to his Uncle Bryan..."when you get smaller you can have mine". How sweet and innocent was that?

Pulling at my Heartstrings

As the rains were pouring down this past week and I was loading Trey and all my errand "stuff" into the car, I made the mistake of putting the electric screwdriver on the seat of the car, next to Trey, instead of on the floor. I hurried as quick as I could once Trey and I pulled up to Physical Therapy to get him from the car and into the building...obviously I wasn't quick enough for "Mr. Busy". Trey unbuckled himself from his seat, and pressed the electric screwdriver's trigger on the handle faster than I could get from the front seat to the back. I was numb to see and hear Trey using the screwdriver on the back of the leather seat in our SUV. Trey knew in an instant I was so disappointed in him and tried to work his "magic" on me his entire time at physical therapy...I didn't break a smile (ok so maybe a bit of a smile) and Trey knew I was serious about him not touching what wasn't his. So an hour and a half later we're in the car again ready to drive back home when Trey calls my name. I look in the back seat and there he is, with the most adorable look on his face and his hands in the shape of a heart as he says, "I Love You Mommy". I have no idea who taught Trey that little gesture with his hands but with out hesitation, I smiled and returned the sentiment, looked forward and was reminded not to sweat the small stuff and to thank God for "Little Mr. Big Stuff"...our Michael Trey.

Rainy days

As most of you heard, Arizona was hit with some pretty hard winds and rain this past week. On our drive to physical therapy, Trey and I noticed the birdies on the front of homes in our neighborhood trying to take cover from the fierce weather. Trey asked me to pull over so he could "see them mommy". Trey is always so concerned with others well being...such a sweet soul. We sat and watched the birds together long enough to be late to physical therapy... that was one moment I was glad I didn't rush.

Busy, Busy, Busy

It is beyond me the mindset of people doing for Trey, week after week, (and in this case) year after year. Mr. Dan and Mr. Robert have again taken on the arduous task of putting on Treys Treasure Chest for Hope fundraiser and have put in so many days and hours of what is obvious unpaid labor to bring to us another amazing night. Mike and I have been able to make the majority of the meetings (and have brought Trey to a few too - he's a good supervisor) this year, which has allowed us to be a part of this event and to see and feel first hand the amount of effort everyone is putting into this fundraiser... all for our baby Trey. THANK YOU ~THANK YOU~ THANK YOU!

Please try to join us, February 27th...the prizes are again very, very impressive, always a great deal and go to a great cause.

See the site for more details: http://treystreasurechestforhope.org

AND become a fan at www.facebook.com/treystreasures

Feels Good On My Bones

The beginning of 2010 has been everything we could have wished for and more. April of last year I was emailing Laurie at the MPS Society when as always she asked how Trey was doing. I followed up with, "in the bath as usual, the child loves the warm water". From that sentence on, Trey's life was about to get better. Laurie informed me that the MPS Society has a family assistance program for hot water therapy but the catch was we would have to obtain a denial from our insurance company first,and getting that was a long and tedious process. Explanation after explanation,fast forward to the end of November when the denial letter finally came. Mike,Trey and I went "shopping" for the perfect jacuzzi for Trey. In passing I told Treybo's auntie Cathy about the MPS program. The very next day Cathy calls me and tells us to go to Sunset Spas, the owners names and the deal that is in the works for Trey. Cathy proceeded to tell her long time friend and neighbor, Mrs. Jackie (who has worked for a spa manufacturing company for about 20 years) about Trey. Jackie has never asked for a favor from her company but must have thought that Trey's story warranted asking this time. We went to Sunset Spas and did find the perfect spa for Trey, the only one we had seen yet that had steps going down into the spa aka - a seat for Trey! Every other spa was too deep for Trey to sit in so we thought we'd have to settle for Trey's seat being an uncomfortable hump in between two other seats. We not only found the perfect spa, the perfect neighbor, the nicest owners to assist us and deliver the spa super quick, but also the perfect price! Together with Jackie's favor being granted and the MPS Society qualifying us for the family assistance for hot water therapy, Trey's jacuzzi came to us the first week of January, free of charge!

Trey had school the day his jacuzzi was being delivered and couldn't even wait to take his back pack off before he ran to the back yard to see his jacuzzi. He also didn't leave it's side until it was completely full of water. If that wasn't enough, the boys insisted on going in the spa that night at a very cool 84 degrees.

I can't begin to express how much Trey loves his new "little pool" or "coozi" as he calls it. He even told Mike it felt good on his bones and asked did it feel good on Mike's too.
Mike and I are once again beyond touched by a complete strangers gesture of love and support and AGAIN would never be able to thank her enough for her act of kindness...a world of thanks Jackie!

yes, Trey is one lucky little boy and has one very special Auntie Cathy!

Christmas 2009

* Trey's face Christmas morning *

Other than daddy falling off a ladder and breaking open his head while attempting to hang a very special Christmas star for mommy, our Christmas break was nothing short of wonderful. Mike and I are night owls at heart and just love when the boys have Christmas break from school so that we can stay up late and watch classic Christmas movies and sleep in really, really late and eat breakfast for lunch. We make a big comfy bed on the floor at the foot of our bed and let the boys sleep in our room night after night, going to bed talking together all about Santa, how good (or not so good) they've been, the presents they'd like and the one's they've changed their minds about (not good for Mrs. Claus who shops early) and about the fun we've all had that day. This year we were so blessed to have our entire family over to our home on Christmas Eve, get to spend late Christmas day at grandma Joyce's and Papa John's and Christmas night at grandpa Steve's. Food, food and more food, gifts, gifts and more gifts,family, family and more family...we never get tired of any of the three.

Trey got a new bike for Christmas and rides his little heart out. I have had tears almost every single time he rides as I remember back to the limitations the doctors put on Trey in the beginning, when he was first diagnosed and now look...look how far he has come. Trey amazes me everyday and teaches me even more about faith and the power of having it.

We were so bummed to send the boys back to school as the holidays to us are a welcome break from "reality" in a way, as we live so deeply in the season.

February 2010 Donation Letter

I am writing you today in hopes that you will take a few minutes and read about 4-year old Trey Lane...
Michael Trey Lane is the youngest of three brothers whose spirit and courage are truly second-to-none. I have had the privilege to work with Trey’s father (Mike) who is a sergeant with the Tempe Police Department and watch as he and his wife Cami, a Southwest Airlines flight attendant, have struggled to find answers for their youngest son’s debilitating disease. Even after hundreds of visits to numerous doctors across the country, countless hospital stays, enduring test after test, all in an effort to save Trey’s life they have remained steadfast in providing a home filled with love for their children Drake, Broc, and Trey. And while this struggle continues today you would be hard-pressed to find a more positive and resilient family than the Lane’s.
To give you a glimpse of what they have endured, a year ago Trey was misdiagnosed with MPS VI ultimately resulting in unnecessary and expensive intrusive treatments for Trey. He has since been correctly diagnosed with MPS IV-A; Maroteaux-Lamy syndrome, which is an inherited disorder. Because people with MPS IV-A are deficient in a specific enzyme, the disease affects many organs of their body including the skin, heart, airways, and skeleton. An infusion therapy is in clinical trials in Birmingham, England. If these initial trials bring promising results, trial phases II/III will be brought to the United States within the next few years. Hopefully Trey will be lucky enough to be chosen for these trials. At this time there is no cure for this disease and it is considered life-threatening.

To help Trey in fighting his battle a fundraising event is being held Saturday, February 27th at the Tempe Mission Palms Hotel in downtown Tempe, AZ. All proceeds raised at this event will go to the family to help offset the tremendous medical bills incurred and to improve Trey’s quality of life. It is going to be a fun-filled evening with entertainment, food, cocktails, a silent auction, raffles, and more. If you are in a position to provide a silent auction item, purchase tickets to the event, host a corporate table, or want to discuss a sponsorship, PLEASE let me know! All items, small or large, will be graciously accepted. We are hoping to have gift certificates, gift baskets, sports tickets, spa packages, vacations, movie passes, airline passes, liquor, furniture, shopping sprees, a vehicle, etc…the sky is the limit, and your creativity is welcome. This event is not sponsored by nor is it an official event of the Tempe Police Department, rather a few friends doing what we can for this precious 4 year-old boy.
To learn more about the event benefiting Trey Lane including sponsorship information, how to donate a silent or live auction item, and to purchase tickets for the event please visit: www.treystreasurechestforhope.org
My contact information is below, I hope to hear from you soon. Thank you in advance for any help you can provide.

Dan Masters
480-216-0242
arizdan@cox.net