I would like to start this blog by saying that if you have a child with ASLD please send me an email at lauren122885@hotmail.com. I noticed on a blog a few weeks ago that somebody just had a child diagnosed with it but I could not figure out how to email you from the response. My husband and I would love to talk, give advice, help, or do anything for children like Hayden.
It has been nearly three weeks. Hayden would have turned 15 months on Saturday. It was a bittersweet day full of emotions. We went to the cemetery to see gifts galore. He received cards, a bird house, sunflowers, hope stone, a guardian angel, a Peter’s angel, a jar of sand and sunshine, wind chimes, a hope Pandora charm, a wooden moose, and a vase of fresh flowers. I have to tell you my husband and I just said WOW! Sweet Hayden has more visitors at the grave than I could have ever imagined. A sweet soul that could say zero words yet impact thousands of lives. I must admit that we are proud to call him our son.
Hayden is 19 days seizure free. It has been nearly a year since I have been able to say this. Brent and I are taking it a day at a time. Some days are better than others. Luckily, we have each other. We just simply giggle as we talk about the past 15 months. You see, Brent and I have a bond like nobody else. Nobody will ever understand exactly what we have been through. Only a few of the 1000’s of people that “think” they understand truly do. We are riding the craziest, most insane, yet the most rewarding rollercoaster in the world. Well, to celebrate Hayden being seizure free I decided to throw away all of his medication. Hayden received medicine three times daily. All of these were part of our life and routine. I still wake up and catch myself trying to go fix meds. Fixing medicines was a process and routine. I did not mind. I did not complain. I would do anything to fix the medication just one more time. Unfortunately, the picture below is just a reminder of how sick Hayden was. Hayden was a perfect, sweet, and innocent Earth Angel. Hayden deserved only the best. It makes me smile to know that he no longer needs all of these medications to feel good. He can walk, crawl, giggle, and talk. He is WELL and HEALED. Hayden is SEIZURE FREE without the help of medicines. Yes, these are the only reminders that are getting us through the bad days.
“Do not let your hearts be troubled. Trust in God; trust also in me. In my Father’s house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.” John 14:1-3
“There’s no greater gift than to have loved and be loved unconditionally. And there’s no greater pain than to let go of the one who was loved so completely. What is love without pain? Is there such a thing?”
Lauren & Brent, I will be happy the day I can read your blog and not cry for the pure love of this precious boy,I have followed you for the past 5 months and have so deeply appreciated you sharing Hayden's journey with the world.I know this can't compare , but at 29 years old with two small children , my Mother suddenly passed away.I was devasted to say the least , she was my ROCK.I had almost mourned myself sick when a friend stopped by to visit , I said to him, I dont think my Mother can rest in heaven when her children are so hurt and torn,and how will she ever know how much we loved her? he said sure she can..You see, all your pain , tears and grief God turns that into PURE LOVE and thats what she feels and how she receieves it, Otherwise it wouldn't be HEAVEN for her..So I know that every tear , groan, heartache that you feel , Hayden feels it as AMAZING LOVE . For some reason that helped me get through the ruff times, its been 16 years since Mom passed but I know that I know that I know , It IS WELL with Jesus..
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