One week of an Empty Home

Well, Well, Well it has been a week since the last time I fed Hayden and gave him his meds. 9:00 is a very important hour of bonding between us. It is a full moment of being busy with meds, feeds, tube cleaning, singing, suctioning, and the list goes on. This was also the hour of the morning phone calls to all the ones that dearly loved him. They would get worried if I did not call by 10. All these are missing voids in our life at the very moment.  

                I believe we are coping well with the fact that Hayden is giggling, smiling, running, and talking. He keeps telling me, “Just Breathe Mommy Breathe.” I went to his grave twice yesterday. Once, I wanted to go just alone. I cried out to him about my feelings. I cried out to him about how crushed I was. In the meantime, two friends pulled up and encouraged me through my mental breakdown. One friend is a friend I see weekly. The other is an example of true friends that you just don’t see that often. She called and texted all the time even though she was “not good with words” and has dealed with her on sadness. He woke me up in a dream last night. He said do not worry about your feelings mommy. Your friends need you to give them big ole’ hugs from me. He said the fortunate knew and loved me. They are more blessed than the richest man in the world. He said don’t dare worry about the least fortunate and naive. They are less blessed than a person that is homeless. He said mommy and daddy, I love you so much. I pictured him on Earth. He was crying and in pain. He was seizing. I woke up with a smile on my face. I love my little buddy in Heaven that is near one week seizure free!

                We have received over a 1,000 facebook and text messages this week. I have not responded as it is not possible to respond to this many messages. For the people, that  wrote letters and said your not good with words. This made me smile to know how much you care. For the friends that have been “babysitting” us, you’re our world. For the moms that have experienced death, yes you are the only ones that can relate. I must say Hayden was so delicate. He had so many precious years ahead of him. I have to admit he had the prettiest lips in the world.  We love our friends and family so much. Hayden had more people in his life that loved his little body than would ever love us in a lifetime.

                I cannot imagine the people that will be saved in Jesus’ name because of Hayden’s great testimony. If you are one, I would love to know. Hayden’s legacy is just beginning. We will be doing something in February for Rare Disease Day. I know it is a great excuse to get to wear jeans to workJ we will be having a huge fundraiser, dance, meal, and silent auction for Batson. Girlfriends of mine, we are going to paint a mural for the halls of Batson. It is okay, I cannot paint either. I promise you Hayden will watch and lead us through this. Washington School will be selling wristbands that say HOPE for a football game. All the proceeds will go the Hayden’s third home.

                Please pray for us today. No more feeds. No more meds. No more baths. No more kisses. It is all gone until we meet again. It is just the hardest thing to cope with in the world. I hope that nobody I know ever has to face these difficult challenges in the world. I hope that each of you have the ability to be reminded of how precious life is. I hope you continue to keep all the sick kids in your prayers. The children’s hospitals are full of sick kids. Yes, you think it’s bad because it’s a Monday which means a full week of work. You could be holding your child’s hand as they scream while nurses look for that perfect vein. This is the only thing holding me together. The fact that Hayden is no longer needing deep suctioning, oxygen, CPAP, needles, vein finders, ultrasound machine, chest compression, meds, feeding tubes, fundo and gtube surgeries, eeg, ekg,monitors, spinals and the list continues. NO MORE NO MORE! He is running and playing. I thank God each day for such a precious blessing. If you are in the less fortunate group and never had the ability to follow his story from the beginning, I encourage you to do so. You will see how awesome, blessed, beautiful, and amazing he was. If Hayden’s story doesn’t change your life for ever, I will be highly surprised.  Nothing can ever change our LOVE for our baby boy.