Jake, Nathan, Elisabeth & I belong to a group called Intermountain Healing Hearts, which is a heart group for children that have undergone or will undergo heart surgery for a congenital heart defect (a defect that is present at birth). This group and its members have been very supportive when Nathan had his surgery and because a lot of the kids with heart defects also have other issues (like Nathan)its been very helpful to be able to ask questions about how other families deal with their day to day trials. This group isn't very old (I think it was formed last year)but its membership is already well past a hundred families. Most of the kids have been hospitalized at Primary Children's Medical Center at one point or another. I cannot tell you how much these strangers have had such an impact on our lives in the last six months. We follow some of the other heart kids and cry for babies who become "angels" that we haven't ever met personally but are fully aware of their stories. We have such a strong bond with these families and their friendships are priceless!
So here's the deal: They are having a fun run/walkathon on September 6th. There have been a lot of people who have asked us how they can help Nathan. This is how: please fill out a registration form and send it in to participate in this event. The money helps this group provide care bags to its members. They are also hoping to be able in the future to provide monetary support for those members in serious need. Now, if you don't want to participate because you feel funny about it or are too far away, Jake and I are asking for donations that we can give one HUGE donation in behalf of Nathan. I know with gas prices and all that its hard to squeeze out extra money, but every little dollar helps.
Don't make me call and beg you for a donation, because I support this group so much that I will! Let me shed a little light on this for you; Nathan's hospitalization bill for only 6 days in the hospital for his open heart surgery has come close to $150,000. We haven't seen all of the bills come in yet either. Fortunately for us, I'm employed by the state and we hit our max out of pocket shortly after Nathan's birth so it didn't cost us a dime. What a blessing though this could be to others! It also takes money to hold a group like this together and there is no other support group out there for families dealing with these AWFUL experiences in Utah. They need your help! So, Ellinger clan - I will be asking everyone for help at the family reunion if I haven't heard from you before then. Larson family - I will call each of you personally if I don't hear from you by mid August. Tammy - I really, really want you to come with us to this!
Like I said, every little dollar counts if that's all you think you can donate. If you have any other friends or anyone else that might be interested, please ask as well. Send me an email to: firstname.lastname@example.org if you wish to donate anything or plan on participating.
1 in every 120 babies are born with a heart defect. What if that ONE was YOURS?
Our Little Man
We unknowingly became elite members of a world no one wants to be a part of on January 22, 2008 with the birth of our little boy, Nathan, but looking back we can't imagine life any differently. Nathan has had to endure 21 surgeries in the first 25 months of his life including open heart surgery for Tetralogy of Fallot, jaw surgery at 3 days old, 5 cleft surgeries and many surgeries involving his airway, ears, and eyes. He has a g-tube which he uses as his sole source of nutrition. In February 2010 he underwent a second jaw distraction as he was showing signs of right heart failure.
Nathan is our little hero; our witness that prayers are answered individually and that we couldn't be blessed with better family and friends to support us.
One day my world came crashing down, I'll never be the same. They told me that my baby was sick. I thought, "Am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved him for so long. I will not give up on this child. I will listen to your advice. I will give my son any chance. No matter what the price. I will learn all that I need To help my baby thrive. I'll even use that feeding tube. My child must survive! Will he need a lot of therapy? Will he gain the needed weight? Please God, help me do this. As I accept our fate. When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my baby's bed. I watch him sleep for quite a while. I bend down and kiss his head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways.... no matter how I try. And yet, I trust you hold his life, and guide us through each day. My mind says savor each moment he's here, but my heart begs, "PLEASE let him stay"! From pacing the surgical waiting room, to sitting by his bed. From wishing for a good nights sleep, to learning every med. From wondering, "Will he be alright?", to watching him reach out his hands. With every smile my heart just melts, despite life's harsh demands. For all who see that faded line. I look to them and smile. You see my child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to his beautiful heart). God must have known how much I'd love him (Just as He loved him from the start). A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, Our hearts share in all of your tears. Every day I will try and remember, I was chosen for him (and no other). I will always embrace that beautiful day....... When I became a "Heart Mother".
~Stephanie HustedMommy to Braeden HLHS post FontanCarepage name: babyhusted
I "borrowed" this poem off of another blog. I'm not sure who the author is, but it truly touched my heart.(Original version found at http://garyandcamille.blogspot.com Thank you!) Heart Poem:
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."