Our Life with A.L.S. –THE IRVINE FAMILY
Posted by: ddourney May 14, 2014
Prior to ALS, I was a stay at home mom and Rob worked tirelessly to provide for us. We built our third home on a hill in the country and were happy raising our family with love and sunshine :)
Today, we are much the same, but now Rob is working tirelessly to stay alive because he has Amyotrophic Lateral Sclerosis. I hold a job outside of the home, am the primary caregiver for him along with our three girls. Together with our WLRI Army we are Living with A.L.S.
We made many good memories before and after the ALS diagnosis in the White Mountains. Our very first trip was when Rob and I were 21, he took me to the top of Mt. Washington via the Cog railway where I was sure he was going to propose...he waited to do that another day but none the less, we fell in love with New Hampshire ;) and we have returned every year since, bringing our family hiking, sightseeing and having fun at StoryLand. Our favorite ride is BAMBOO CHUTES!
6 1/2 months prior to diagnosis, we completed “The Warrior Dash” a very grueling 5k run/hike through mud and obstacles with a group of great friends by our side. We had just started a new chapter in our lives. Out of the baby stage, our girls were getting older and more independent and we were getting fit and pushing ourselves by running and hiking trails together. We were so happy, so content and looking forward to more challenges we could accomplish together. Little did we know our biggest challenge wouldn't be climbing Mount Washington four months later, ALS was just around the corner.
An Amazing Adventure for our 12th Wedding Anniversary. As we hiked Tuckerman Ravine, Rob and I talked about a lot of things, planning on more adventures. We decided that we would invite a few of our closest friends to come back to Mt. Washington in August of 2012 and hike the trail again. We were going to make it an annual adult trek to do until our children were old enough to join us. Not realizing that that dream, along with our future life with our girls was going to be taken away on January 31st 2012 with the words “You Have Amyotrophic Lateral Sclerosis”.
Its funny how irony works: at this moment when Rob spotted the rainbow we were coming down Mt. Washington and I urged him to stay right there so I could get the shot. We saw this rainbow as a sign that we did well and that our dog Otis’s spirit was with us ...that we were being encouraged to keep going and to finish strong and not give up even though we were so beat. Now this photo and this rainbow has a much deeper meaning ♥ only three months later Rob spotted and stood under another rainbow the day after his diagnosis, a sign from above to keep on going, don't give up and most importantly to have HOPE ♥ Rainbows continue to appear in our life even after ALS Reflecting HOPE
Rob and I are so proud of our beautiful daughters: This is the last photo taken of them before they were made aware of ALS, a disease that has shadowed their smiles and burdened their childhood ever since:Jillian age 10, Julia age 7 and Jenevieve age 5.
We are pictured at the annual Sunflower Fields in a neighboring town. Rob had been diagnosed with ALS for 6 months. Still smiling, now with more purpose and a deeper appreciation for moments together like these.
What we are learning since the ALS diagnosis is that life is short, to live in the moment, cherish our relationships, make happy memories to hold onto, and to forgive quickly, because time is love ♥
Over the last two and a half years we have been able to move forward through the devastation of ALS in a positive way because of our community and friends. We have been supported every step of the way, unwavering support that we are so humbled to have. We have found others like us in the ALS community who live with purpose, and we continue to stand by the Gleasons in their mission: NO WHITE FLAGS being our motto. With so many willing to Run for Rob and Shout for A Cure!
Our Army did it again, raising money to help with the cost of living with ALS. Our local feed and grain store hosted another fundraiser and country style celebration for us and it was so very memorable! Two photos of Rob and the band Uninvited Wilson – Music Heals ♥ Laughter is the Best Medicine ♥
There are many who have crossed our path in our quest for health and answers and who have stepped in to make a difference. We have learned the importance of feeding our bodies’ good nutrition and mindful of what each new day has to offer. For Rob this has come in the form of Liquid HOPE ♥ and looking for new ways to heal like exploring Acupuncture J
So much will be chosen for you when you have an illness such as A.L.S. – but You can Choose to Live HAPPY and HOPEFUL no matter what your adversity is.
Thank You to Our Army, Those Who Have Joined Us and To Those Who Will
– We Know We Are Not Alone ♥
Please visit: www.weloverobirvine.com to see all of the photos associated with this article and learn more about the Irvine family and Rob's battle with ALS