| December 16, 2009
Wow it has been a long time since I’ve written. I hate this time of year. This time of year reminds us of our loved ones more than ever. The beautiful happy memories we shared and the hard cold fact that they are no longer with us. It is a very emotional time. I love the lights and Christmas trees but it still leaves me feeling sad. It has been a difficult year for us with many trials and heavy loads to carry. It’s just been one of those years. Our Leah’s Happy Hearts Christmas event has been canceled due to the restriction of visitors coming into the hospital because of swine flu. I do know that some children have caught the swine flu that were in the hospital so I totally understand the need to be cautious. If my child was in the hospital I would appreciate the effort they are making in keeping my child free from other illnesses. We will still be dropping blankets off with the hospital staff so they can distribute them to the children along with gift cards for the babies. Thanks to the help of several girl scout troops, Northville Christian School, Stevenson High School, and Plymouth Canton High School students we were able to get approximately 100 blankets made, purple heart gift tags made, and each blanket rolled in Christmas ribbon. Thanks to all for your efforts. These blankets provide a sense of security for these kids while they are in the hospital and they are just plain fun to receive. Mott Hospital hosted a seminar sponsored by Leah’s Happy Hearts for the Pediatric Palliative Care department. We donated money to this department 2 years ago because of generous people like you attending our fundraisers. See when Leah was diagnosed, this department did not exist and I truly believe that support from this department would have made our experience better. They now have many families that they help and this seminar was a way of getting the word out there to all hospital staff how beneficial this department is and when they should start referring families to their department. Phil and I were invited to share the story of Leah in front of all seminar attendees. Thanks to University of Michigan Mott Children’s Hospital for this honor and opportunity. We are doing okay here in sunny Florida. The weather is great but I do miss many things about Michigan and one of them is you. I don’t know what God has in store for us but the job situation certainly has to dictate where we live. Kylie is doing fine considering the situation and is still swimming on the swim team. She just now started training with the high school students so her practice times will be even longer and much more difficult. We are going to volunteer at Give Kids the World again over the holidays. I’m looking forward to it as we will be working at a birthday party so there will be a lot of interactions with the children such as dancing with them and making them laugh. What is in the future for Leah’s Happy Hearts? We will still be hosting our annual Family Fun Walk either late May or early June. As soon as I have a date I will let you know so stay tuned for more information coming in January. I will also have news on the next donation Leah’s Happy Hearts provides. Sad as this time of year may be, we need to be reminded of what it is all about. Jesus and how he is there to help us in hard times, to carry us when we fall and to inspire us to keep going. Please keep all the families that have lost a child, or who have a child battling a life threatening illness in your thoughts and prayers during this time of year. Also those that are grieving because they lost someone special to them. So to all of you out there, we wish you a very Merry Christmas and a Happy, Peaceful, Healthy New Year. We love you and miss you Leah!!! Wish you were here. Karen – Kylie and Angel Leah’s mommy forever and ever |
| August 2nd, 2009 4 years ago our baby girl Leah was lying in the hospital with tubes allowing her to breathe fighting for her life only to lose it the next day. She actually went into the hospital on August 1st with eyes closed and heavy raspy breathing slowly slipping into a coma from which she never woke up again declaring August 3rd the saddest day of my life. The saddest day – how will I spend tomorrow? We have been sad the last couple of days and especially today. We think of Leah all the time but these anniversary days still stab the heart each year causing tears to shed. Oh how I wish I could just hug her and tell her how much I love her again. So how will I spend tomorrow? Should I stay in bed with the pillow over my head ? No, doesn’t help. Should I drink enough red wine where I can’t feel the pain anymore? No, it will be back tomorrow. Should I look back and be proud I didn’t punch the lights out of someone who said the wrong thing, or acted self-righteous thinking their children are immune to disease because of their organic diets, their medical backgrounds, where they live, or their race, religion, faith, lifestyle, bank account, etc… Glad I didn’t punch someone but fact of the matter is brain tumors followed by death have occurred in children who have eaten all organic, children who have parents that are brain surgeons, poor children, rich children, all races and religions, and yes even those who prayed and prayed and had hundreds of others praying for their child. Brain tumors know no boundaries. In can happen to anyone at anytime. Life can change in the snap of a finger. Part of my mission is to spread awareness and with spreading awareness comes the realization that a cure must be found. Friday night we drove to Orlando to volunteer at Give Kids the World again in honor of Leah. We worked the dinner shift in the Gingerbread House and I was the greeter once again while Phil and Kylie served drinks. It is such a wonderful place for us to be and I get such joy out of making a child smile by asking them about their day at the parks. There was a little girl in a wheelchair that had a birthday so we told the kitchen and we were able to come out with a cake and sing Happy Birthday to her. It is the little things that make the entire week special for these kids. It is the hugs, high-fives, and genuine caring we all give them that will make it a week to remember for them. As Winston Churchill once said, “We make a living by what we get, but we make a life by what we give.” We are doing okay here in Florida but we miss family/friends and especially going to the cemetery to visit where Leah is resting. How I wish I could go there tomorrow and sit on the green grass and just talk to Leah while listening to the sounds of nature around us. I am grateful for my dear friends, Anne, Pat, Marian, and Patty that have so generously offered to take care of the grass, flowers while going to visit Leah. Thank you so much. I can’t tell you how difficult it is being away from the cemetery. I hope she knows that we moved because at the time it made the most sense for us as a family watching out for their future. I hope she will always know just how much we miss her and love her. Kylie is excelling at swimming and her backstroke is tops. She just keeps getting better and better and I’m beginning to think this may be her ticket to a scholarship. She is still doing volleyball and enjoys that just as much so we will see what happens. She will be starting school soon as Florida starts mid-August. I thank God for her every day. We still have our two cats and they seem to love the new house. They are doing well but are definitely an anchor when we want to get away as we have to hire someone to stay with them. We met some Michigan friends in Orlando about a month ago and had a great time with them; Blizzard Beach was really cool. Thanks Pat and Tom and we miss you guys!! Our walk was a success and we made approximately $16,000.00 and had about 250 walkers. We were lucky that the rain held off as it was looking a bit threatening. Thanks to everyone that donated, and/or came out and walked with us. Thanks to the Northville Township. Fire department, Miss Uffie the clown, Bird’s Butterflies, and Northville Christian School for helping to make this event a fun time for all. Thanks to all of our Sponsors and Food Sponsors as well for they all helped us to achieve the end result of $16,000.00! We will now start using the money to purchase gifts for the children at Mott hospital at Christmas. All remaining monies will be donated to help fund research. As soon as we are done with the Christmas event we will have a better idea as to how much we can donate and then we will decide whom we will give it to. More to follow on that. Well I’ve blabbed enough so I will close. Hug your children today and tell them how much you love them. I will spend August 3rd remembering the love we shared with little Leah, remembering her happy heart, her sensitive, caring, generous spirit, remembering the lyrics to her favorite song, “How Far is Heaven”, and of course shedding tears for the great loss we have to live with. I will remember how when I told her how much I loved her, her first response was, “But do you love Kylie too?” She would then say I love you too Mommy. I will remember how whenever I would tell her we will all go to heaven someday she would tear up and say, “But I will miss my pretty light.” (She had this pink flower night light in her room) Sometimes, she would hug me and say, “But I would miss you and Daddy, Kylie and Batman so much.” I will remember how she would look at me and say, “My heart is happy.” I will remember how I would give her a bowl of peas and she would say, “You gave me much peas.” All of these memories make me smile. The only comfort is that she is not in pain. Leah, I love you, I miss you, I hope your heart is happy and I will always, always be your Mommy and you will always be my baby girl. Thanks for checking in and listening. Blessings, Karen (Kylie and Angel Leah’s mommy forever and ever) |
| June 6, 2009 Just a quick note to let you know I’m in Michigan for the Leah’s Happy Hearts Walk. Rain or Shine we will be there; Maybury State Park at 1:00. You can register there or if for some reason you cannot make it you can make a pledge at www.leahshappyhearts.dojiggy.com/thejamesfamily. Light lunch, clowns, fire-trucks, face painting and a mass butterfly release are all going to make for a fun day while knowing your donations are helping research move one Hi everyone, step closer to finding a cure. Hope to see you there. I love you Leah and miss you forever. Look how you brought all of these people together; all because of you my precious angel. Blessings, Karen Kylie and Angel Leah |
| May 8, 2009 Hi everyone, We are settling in and I am homesick. I love the weather here and it is very pretty but I miss all of you. I really do!! We are heading to the beach for Mothers Day as it is such a hard day for me but then at the same time I am thankful for the chance to be a Mom. I am thankful for the 5 _ years we had with Leah and I am thankful for Kylie, really thankful! We are hosting our Second Annual Family Fun Walk for Leah’s Happy Hearts on June 7th at Maybury State park. I hope to see you there; the mass butterfly release will be awesome!! New this year is the ability to pledge online in case you cannot make it. Please check the pledge page for more details Anyway, Happy Mothers Day to all of you and please enjoy the day and be thankful for your Mom’s and for those that have children, embrace them. In honor of Mothers Day I am going to publish a poem that I saw a couple days ago from someone in one of my support groups. It sums up how Mother’s of angels feel....at least a little bit. Please keep all of those Mom’s that have lost a child in your prayers and thoughts and all of our Mom’s that have gone to heaven I thank all of you who help me to survive each day and you know who you are. Lastly, I thank God for carrying me. And now the poem I like to think my daughter had an influence in. My Mom is a Survivor My Mom is a survivor, Or so I’ve heard it said. But I can hear her crying at night When all others are in bed. I watch her lay awake at night And go to hold her hand. She doesn’t know I’m with her To help her understand. But like the sands on the beach That never wash away….. I watch over my surviving Mom Who thinks of me each day. She wears a smile for others… A smile of disguise! But through Heaven’s door I see tears flowing from her eyes. My Mom tries to cope with death; To keep my memory alive. But anyone who knows her knows It is her way to survive. As I watch over my surviving Mom Through Heaven’s open door… I try to tell her that angels Protect me forevermore! I know that doesn’t help her, Or ease the burden she bears. So, if you get a chance, go visit her. Show her that you care. For no matter what she says… No matter what she feels. My surviving Mom has a broken heart That time won’t ever heal Copyright 1998 Kaye Des’Ormeaux October 15, 1998 |
| April 14, 2009 Hello everyone, Well we are in our new home and we are okay. The move was fairly smooth with the highlight being that Kylie and I were able to fly first class thanks to one of my very close friends. Thank you!!!!! The downer was that taking cats through security out of their cages is the most idiotic thing I’ve ever heard of. Kylie had Jack who did fine; I had Batman who did fine while walking through the security arch, however when I tried to put him in his carrier he freaked out! Growling, hissing and biting like crazy. I had him by the pinch of his skin as I was determined to not let him go no matter what the cost. I was bit about a dozen times and Kylie was bit 5 times as we wrestled with him trying to get him back in the carrier. We finally did and there was a lot of blood. Security was saying, “Oh my God” but of course couldn’t help us other than getting us some alcohol wipes. Whew, glad that part is over. Kylie’s school is okay but of course she misses her old school and friends and would rather be back there. It still feels like we are on vacation and I think it will for a long time to come. We are renting a cute house with a pool and fenced in lanai. We bought Kylie a golf cart because of the fact she had to move so she tools around on that throughout parts of our sub. We also have an indoor community pool and an outdoor pool, golf course, tennis courts, bocce ball courts, a huge fitness center with a spa, etc. Sub is nice, neighbors are nice but I miss my friends and family. We will rent here for just over a year and then assess the situation and figure out where to buy a permanent residence or whether or not Phil should transfer to another location. Time will tell. Our next annual Family Fun walk for Leah’s Happy Hearts is Sunday, June 7th at 1:00 p.m. with registration at noon. Please watch the website for details and for a way to register online ahead of time so that you can be guaranteed a t-shirt. There will be a mass butterfly release which will be fun and of course, like last year a clown, fire trucks, food, t-shirts and maybe a surprise or two. This year the t-shirts will be purple so it will be neat to see all this purple walking throughout Maybury with Leah’s heart drawing on the front of each shirt. Hope to see you all there. Let’s raise more money to help find a cure for this monster (pediatric brain tumors) and help us to make the next Christmas shopping event at Mott hospital better than ever. No child should have to battle cancer and all the horrible things that go along with it. Not fair!!! Leah should be here swimming with Kylie and sharing this experience with us. God, I miss her. Not a day goes by, or an hour goes by that I don’t think of her. I hope she knows just how much I love her. I hope families realize how lucky they are to have their children with them each day. I was reminded at yesterdays Easter service that because of Jesus, we have hope. Because of Him we all have a reason to go on, even those of us who have lost a loved one. We will see them again as long as you give your heart to Christ. Next weekend we are going to an orientation at Give Kids the World where we will volunteer at least once a month. For those not familiar with it this is the place we stayed when we went on our Make a Wish trip with Leah. It is a wonderful, magical place that is run by volunteers so we are so looking forward to giving back to other families in the same way they gave to us when we stayed there. It will feel good to be around others that are in the battles of their lives; the battle to save their child. I feel best when I am around families like that so I am excited that there is somewhere I feel I can fit in. Also, knowing Leah liked it there and that we stayed there makes me feel like her spirit is there. There is a brick paver there in her name and a star on the castle ceiling with her signature on it so it is always fun to go and check that out. We also took one of her dolls there which is in the gingerbread house but I can’t for the life of me remember which doll it was or where we put it so I think I will take another. There are hundreds of them on shelves in the gingerbread house. I hope everyone had a blessed Easter and please know that I miss you all. I will be back in June for the walk and hopefully get to see many of you then. Blessings, Kylie and Angel Leah’s Mommy forever and ever, Karen |
| February 12, 2009 Hi everyone, Well I have big news. It is with sadness, excitement, guilt, and being afraid that I will tell you we are moving out of state. Phil has accepted a job out of state that will enhance his skill sets. I’m not going to say where but those that know me can email me or call me and I will let you know. This is a chance for us to have a new beginning, a fresh start. Not sure if it will be good or not but time will tell. I know God has chosen this path for us for a reason and we are following and listening to what God is telling us. I have a few friends(thank goodness) that God has blessed me with that will watch over Leah’s site but if there is anyone reading this that goes there often, will you please ensure that my angel’s grave site is watered and kept trim and neat. I would appreciate it so much!!!! I will miss walking to the cemetery and talking to Leah’s spirit. I know I can do that anywhere but it was a definite comfort for me. On a positive note it will be good to shop at different stores I think and just be in new territory. I will miss friends and family terribly but the weather will be much nicer than it is here. I only wish Leah were coming with us. Good and bad as with anything. Kylie will miss her friends and family as well but I think she will be fine. Here it is 3 1/2 years later and it still hurts like crazy. You never heal but you learn to live with the hurt and it becomes a part of who you are. I’m not sure why we were chosen for this task but I guess I will never know in this lifetime. Being that I will be dealing with unpacking we will be unable to have the walk this year as there is really nobody that has the time to chair the walk and all that has to be done for it. We will brainstorm and try to think of some other ways in which to raise money so that we will still be able to at least host the Christmas event at Mott hospital. If anyone has any ideas please drop me a line. Happy Valentine’s Day Leah and please know we miss you and love you forever and ever. May everyone reading this have a blessed weekend and stay healthy. God Bless, Kylie and Angel Leah’s mommy forever and ever Karen |
| January 11, 2009 Happy Birthday my beautiful Leah. You would have been 9 years old today here on earth. Oh how I wish I could hug you and hold you and watch you eat a cake that has lots of frosting and sprinkles on it. I wonder what type of cake you would pick out now? Losing you is the most difficult thing I’ve had to go through and actually we will be going through the journey of losing you for our entire lives. We not only lost today with you but we lost the future with you. Our lives will never ever be the same nor will any one of us ever be the same. You were an angel from the start and I feel blessed to have been your Mommy!! I, We, will keep the dear memories of you in our hearts our entire lives. I know you wanted to ensure I take good care of Kylie by always asking me, “But Mommy, do you love Kylie too?” Of course I do I would say. And that is the main reason why Phil and I continue to wake up everyday, and try to do the best we can each day with our lives so that our family life will be the best it can be. I love you and miss you lovely Leah and I will my entire life. I know you will be that little star looking down on me. Since today is your birthday, I would like to close with a poem that I have posted here before but I love reading it so here it is again: Remember Me With Love … As years pass by and others rarely mention my name, remember me with love. When my anniversary date arrives, take a moment to say my name aloud. If tears fall, let them. Wherever you are—I am. I live in your heart, mind, and soul. Don’t worry, you will never forget me. And we will be together again. “And this is what he promises us—even eternal life.” 1 John 2:25 I have taught you about a mother’s love in a way nothing else possibly could. Don’t waste this lesson. Use the love you possess to still give to others. Comfort others who’ve had a loss; do it in my memory. The world needs more people who care. And besides that, a little of me lives in each person you touch. You have the power to make my legacy one I would be proud of. “Dear children, let us love not with words or tongue, but with actions and in truth.” 1 John 3:18 Light a candle, buy a rose, perform an “act of kindness.” Simple things. But then, our love is so great, no remembrance could ever be large enough to show how much you love me. For true love has no boundaries. And don’t forget … I love you, too! Look at a puffy cloud, flower, or bird. Have no doubt “my angel spirit” is with the One who created these things. Remember, He created me too! “Before I formed you in the womb, I knew you …” Jeremiah 1:5 Contemplate the many gifts I’ve left, and how I’ve affected your life in a good way. I’ve shown you how precious life is, and given you a greater appreciation of it. I’ve let you discover how strong you really are. I hope my short time here has made you discover what’s really important. Has it made you a better person? I hope so. “Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up.” Psalm 71:20 Your faith was tested, and hopefully, strengthened. God mends broken hearts. I hope He has mended your heart and filled it with a peace that only He can. “The Lord is good to those whose hope is in Him, to the one who seeks Him.” Lamentations 3:35 “And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:7 Most of all, know that the Bible says our love is eternal. “And now these three remain: faith, hope, and love. But the greatest of these is love.” Corinthians 13:13 If you think of me today I’ll be rejoicing from above To know you have remembered me With your precious mother’s love. By Gail Fasolo Sending balloons up to you! Blessings to you, Karen Kylie and Angel Leah’s mommy forever and ever |
| January 5, 2009 Happy Healthy New Year. As 2009 starts I thought I would sum up what Leah’s Happy Hearts accomplished in 2008. We had our First Family Fun Walk in May and it was a success. Many friends and supporters showed up and we were so grateful. We had the fire trucks there distributing goodies such as hats, pencils to the kids. We also had clowns making balloons, tattoo’s of the Leah’s Happy Hearts insignia and plenty of good food. Charlie’s Grill in Northville graciously donated all of the sandwiches so please stop and say hi to them and thank them for their generosity. We also launched butterflies at the end. Okay, I have to say I made the mistake of not keeping them cool enough so they were pretty restless but it did help make catching them that much easier. Thanks to everyone who came and walked or helped. We also provided mini wishes to two boys battling tumors. One boy received a gift basket filled with sports memorabilia and a fathead of one of his favorite players. The other child received a flat screen T.V. that was graciously donated by a couple of friends in N.Y. In June I was able to go to Washington D.C. and advocate for the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. This act authorizes $150 million over 5 years for childhood cancer research. A couple other representatives from Michigan attended with me – in fact most states had people representing them that were touched by childhood cancer in some way. At the time we were there the act had only passed the house. It has now become law. Yay! $30 million annually starting in 2009 will be allocated for pediatric cancer research. Last but not least we had our wonderful shopping event at Mott children’s hospital a few days before Christmas. The children were precious and we all found it very rewarding. We provided them with no-tie fleece blankets that we made with the help of friends and both Northville Christian school and Troop 5702 (girl scouts) from Randolph elementary school in Livonia. The children also picked out gifts for themselves and for their family members which we wrapped and returned to them to give to their families on Christmas day. We also provided Mott Children’s Hospital with a check for $10,000.00 for the pediatric palliative care department and a check for $5,000.00 specifically for their pediatric brain tumor research lab. In addition, $2,500.00 was given to the Pediatric Brain Tumor Foundation for research. I thank all of you for your support this past year. We are humbled by how many people continue to lift us up in prayer and support our foundation. Thank you again for checking on us and may you all have healthy years for your families. Praying for a cure and missing Leah with all of my heart. Blessings, Karen Kylie and Angel Leah’s mommy forever |
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