Hello everyone,

This is Daniel’s Dad, Justin. It has been a while since I’ve wrote. Daniel just had the best visit with Grandma and Grandpa for Thanksgiving. Grandma held Daniel a lot and even gave him a hair cut, and then Elmo visited! Please check out the video links at the bottom of the home page to see Daniel’s unforgettable expression.

Things seem to be falling into place for all of us as we approach this holiday season.  We are becoming more settled in our new home. We have been isolating for a few month’s since the H1N1 season hit. We are all finally immunized and will be letting Daniels therapists back into the home for regular visits; Daniel is very excited about this.

We are very excited about the cutting edge research coming out of California for SMA. We believe Hans S. Keirstead of UC Irvine may possibly hold the key to a possible cure for this devastating disease. We hope that the FDA approves his clinical trial of stem cells on human SMA models soon.

Thank you for reading and hope to speak soon.

Justin.

Dear Family and Friends,

I have a huge request in light of the bad economy.  This request will not only help and support Daniel but the other thousands of children with SMA. 

Moving day finally arrived last Saturday.  We feel so very blessed to have our own home.  Hopefully now we can create a fun, stable environment for Daniel.  His new hospital bed is coming today.  He seemed very confused with his new room but glad to see some of the toys that had been stored.  There are boxes everywhere.  Grannie Annie has been working hard to unpack for us.  I have not been feeling well this week but things seem better today.  Justin is busy working but has Friday and Sunday off this week.

Our home sits on a hill and is a pale yellow color with green shutters.  We have three bedrooms and two bathrooms upstairs and there is a full basement below.  The former owners started to finish the basement so we do not have much to do to make it a great family room. 

Daniel has the best sun in the morning!  We can look out over the city and see the trees as they are changing.  Daniel loves his windows! 

Daniel’s Triple E team starts coming next Tuesday.  We have been so blessed to have his OT, Miss Ruth, come to see him all summer.  He loves her and we love how they interact with each other.  They will all be so helpful in making this big transition….both as a family and for Daniel as a student/patient.

We are looking forward to fall but dread the winter.  Hopefully it will not be as long as last.  We love the snow but it is a bit isolating for Daniel and I.  This year the flu season will be horrific.  We are requiring anyone that sees Daniel to have all three flu shots….the regular one and the two H1N2 shots.  Justin has arranged to change and shower before he comes home from the clinic.  We are going to be vigilant about exposure.  I know that it sounds a bit much but if Daniel gets the H1N2 flu he may not recover.  We cannot take any chances with that. 

Thank you to friends and family that have sent big prayers and good thoughts to help us get into our home.  This was the most important step we have ever taken.  We do not plan to live here forever but really needed this stability for now.  This is a great starter house and we feel that we will have some great memories here.  We love you all and all of the support that you have given.  Thank you to our parents, Grandpa Lou, Grandma Joyce and Grannie Annie for making it possible for Daniel to have a good home.  We appreciate all of your love and support.

Big hugs and huge kisses….to all!

THREE

Dear everyone;

As all of you know, it has been a long time since we've update or added to Daniel's Hope. We have been very preoccupied since moving to Vermont. For the past 4 months we have been trying to purchase our first home, something to accommodate Daniel. We found a wonderful 1^st home located in Springfield Vermont, all on one level with room to expand. In the middle of the purchase the home foreclosed and was reposed by the bank. We have since been in virtual limbo. We are renting a condo on Okemo Mountain; a ski resort in the wintertime. We are still waiting to go to closing on our new home and continue to hope that it will happen soon.

Daniel continues to do very well and is thriving in many ways. He has a loner Eye Gaze computer. He is a natural at operating the device. He is able to select items with the movement of his eyes and watch movies of his choice. He has even so far outwitted us with the system in many ways. For example, he found the “back button” and is able to navigate out of the system into Windows applications!

We think he has found a new sense of freedom in the ability to make choices.

As Daniel's dad it had been a very long time since I have posted to the blog. As a matter-of -fact, it has been nearly 2 years (about the time of Daniels 1^st hospitalization in Salt Lake City). I decided to write today because it is indeed a special milestone in Daniels life, and in my life. At the five o' clock hour, Daniel will turn three years old.

I feel so privileged in many ways to see Daniel turn three. There have been many trials, tests, hopes, dreams, silent prayers, and things that went on behind the scenes to get him and our family to this day. Each day that I see Daniel smile I am brought to an overwhelming realization that Daniel was a very special gift from god. I believe he was sent to us to teach our family and all the world some very special lessons. He touches all that he meets in some incomprehensible way. He teaches us about Hope, spirituality, unconditional love, and patience and fate in things that we have no certain control of.

I love Daniel so much and feel so blessed that he is with us each and everyday. He is no way near finished teaching us what it is he was sent to for...we continue to learn more each day.

A few months ago asked some advice for some lingering questions that I've struggled with for a long time. I found much solace in a friend that I trust. Mr. Michel Jackson, a hospital Chaplin who was there for Daniel and our family when Daniel became sick in his first few months of life. I would like to share this with all of you since I am certain that some of these same questions have at one time or another crossed some of our minds.

To: Michael Jackson
Subject: Hello

Hi Justin!

"If I could mend your heart” -- I would invite you to touch your sorrow and feel your feelings, and not pretend to be strong, or capable, or composed. I would listen without comment to all that is unsettled in your soul, your doubts, your anger, your fears about the future. I would heed your cries and probing questions, what might you have done wrong, or, what you might not have done at all. I would promise not to say, "Look how well you're handling things" or "Cheer up, God wouldn't give you more than you can handle," or "You'll be over this soon." Instead, I would whisper in your ear, "We live in a fragile and imperfect world tinged by brokenness and cloaked in unanswered questions. Some things truly aren't fair. This is hard."

"If I could mend your heart” – I would draw you a plan and perfect map to light your path from confusion and despair, to a place of new tomorrows and rewarding journeys. A place where anger could release its grip on understanding, and anxiousness might speak to acceptance. I would shape for you a fresh way of seeing, through prisms of sunlight, that warm your emptiness and guide the way to a new adventure. Prisms of sunlight that temper your pain with compassion and replace your doubts with faith, your grief with gratitude, your fear with trust.

"If I could mend your heart” – I would open wide the doors of renewed hope - a hope much larger than wishes. One that waits patiently, willingly, expectantly, anticipating future good and knowing that life is worth living after all. The hope that I wish for you would predict no answers but invite you to live the questions. It would not demand exact outcomes but ask you to risk letting go and bid you to move forward, even in the face of unease. This fresh hope I send would let you step up with courage to the new day trusting that even pain can be transformed.

"If I could mend your heart” – I would lead you by the hand to this place of healing so that you might once again walk your own path and make memories. I would share with you a secret, "Joy is not about music and dance and laughter, but about the acceptance of life." Healing happens only where fear and love, joy and sorrow, tears and smiles, can forge a lasting peace. The healing I speak of lies not in some safe place along the way, but in having made the journey stage by stage. Until you reach that place, a place you may not now believe exists, I will save your space and watch with confidence for your smiles yet to be.

Amen.

Mr. Jackson is a very special person. His words have helped  me heal through a time of intsense questioning. difficult time. Daniel is here for us, to teach us. We are there to learn from him.

Daniel met a very special family 2 weeks ago, the O'Neil family of Milton, VT. Casey, Collin, Sue, and Jean were all awesome and we hope to see them again real soon. Please visit their blog spot and read about our visit there. Sue O'Neil puts the visit into perfect words. Check out the July 18^th posting!

http://oneillboys.livejournal.com/

Thank you all for reading. We are so thankful in all that stand by our side during this journey.

Love as always and Happy Birthday to you my Son on this very special day.

**PS. We will be updating the site with new pictures and a new layout soon.

I always start out by apologizing for not updating sooner.  Things for us here in Vermont have been so different.  We have a ton of services for Daniel and multiple workers that visit every week.  He has also been testing different eye-gazing systems (a computer that he can communicate with by using his eye movements) and has even gone through his first fitting for a power chair.  Other than that it has been the same old cold and flu season.  He has not had any major illnesses but a few colds.  We have been pretty isolated but it is worth it for him not to be sick.

Justin has been working for the Ludlow Health Center which is located about 20 miles north of us near Okemo Ski Area.  He also does some per-diem shifts in the Emergency Department here in Springfield.  He found that by going back to family health that we would have more flexibility to take Daniel out of town for stem cell treatments. 

We are currently looking for a rental home in Ludlow.  It has been a challenge.  It is definitely a ski town that really relies on “winter” season for income.  Ludlow reminds me of Durango, only smaller.  Rentals are more expensive there but we would like for Justin to have more time with the baby on a daily basis.  I think it is also nice to live in the community where you work.  Our biggest problem with finding a home here in Vermont is that there is not an abundant amount of homes with two bedrooms on the main level.  Daniel only weighs 25lbs but we just do not want to add any risk of dropping him.  I am confident that we will find something this week.  We really need to be out of the house we are in by May so that the owners can put it on the market.  This is a remarkable house, perfect because it is handicapped accessible but we simply cannot afford to buy it.  The owner’s, John and Corky, have been so sweet and loving to us.  We will never be able to express our gratitude to them for letting us live here through the winter.

Did you guys know that there are actually 5 seasons in Vermont?  Fall, Winter, Summer, Spring and MUD season.  I have never seen so much mud in my life and it is challenging (but fun) to get up our road in my mini-van. 

We go back to the Dominican Republic (DR) on the 18^th of April.  We are making ourselves stay the entire week.  We need the family time together.  The DR has become such a huge part of Daniel’s life….not just the treatment but the sun, water and the wonderful friends we have made there.  We are excited to go!!!

Daniel continues to do well.  He is so tall and measures 34 inches.  He looks like a little boy now…..my baby is growing up.  I still love to sit in the recliner and hold him on my chest like I did when he was an infant.  He is very vocal and hums “Winnie the Pooh”  .  Daniel does not say many words clearly but can says Dada most often and when he feel sick he only wants Mama.  We can tell when he is saying Grandma, Grandpa and Grannie because he uses different pitches.  He still says Abbee pretty clearly and now has learned how to almost say Heather.  Heather is his 16 year-old cousin who lives 45 minutes away.  She has come up twice to help me with him.  He also loves Melody, Heather’s 10 year old sister.  Dad says he is a “chick magnet”!!!!!

We miss the west, we miss our friends and we miss the sun.  Weather is getting better here and the sun has been out a lot the last few weeks.  We miss sitting on the porch with our friends in Wendover.  We actually miss Wendover….it grows on you. 

We are so excited about what life will like over the next few years here.  We saw a Frontline special that basically told us that we left Nevada in the nick of time.  It is our understanding that they are even going to cut “well children” programs, which does not make much sense to me as a social worker.  I have posted it on my Facebook page and I encourage everyone to watch.  I am also going to post the actual “Stem Cell Enhancement Act of 2009” on our web site.  There is still so much misunderstanding surrounding the bill and what it actually allows.   We are so close to a cure with SMA!  Please read and share every bit of information about this disease.  I also posted a wonderful video that MJ “The SMA Queen” made for one of her college classes.  MJ is a type one young lady who goes to school and builds web sites for other SMA children.  She also has a wonderful blanket project.  I cried for 35 minutes yesterday after watching the video.  Our children are so full of life and beautiful.  I cried and then went and held Daniel for over an hour! 

Emotionally, things have been hard for me lately.  For those of you that know me….that is a bit unusual.  I love every minute with Daniel but have started to fear the future.  I know that it is normal but feel as if I need to create a project this summer to combat those fears.  We will see how it all plays out! 

Thank you to our family and friends for all of the love and support!  We miss and love you all so much!  Kisses from Daniel to everyone!