A Rhizo Kids Mother's Day

When Ian was born there wasn't much information available about Rhizomelic Chondrodysplasia Punctata. There wasn't many known families with RCDP and it was hard to find any other parents with children with this condition. It was a hard, lonely, and isolating time in our lives. Then God stepped in and showed me that Ian wasn't a "mistake" but a God ordained circumstance where he would bring me one of dearest friends in the world with Tracey Thomas. It was by no accident that our boys were born at the same hospital five weeks apart. It was no accident that the doctors and nurses who had cared for Ian were now caring for Jackson. God did that! He sent me a friend, a sister, and a partner in crime! Tracey and I decided we would start a non profit organization a couple of months after the boys were born. We knew three other families with children like ours and we all worked together to get this started. We started with a $150 donation from my uncle which paid for us to start the Rhizo Kids website. Through that website we have met well over 70 families have been affected by RCDP. Because of that first donation that got us off the ground we have doctors who come annually to our Rhizo Kids conference to meet our children. We have doctors who are doing research on treatments for our kids and we have doctors creating Natural History studies on children with RCDP. We are able to bring many families to Chesnut Bay Resort once a year to be welcomed into an environment where their family is "normal" for a few days. Here they meet with doctors and learn how to take care of their child's serious medical needs. I want to cry every year I see the new families come in...they are so scared. But by the end of our conference they are happy and laughing and it makes my heart smile BIG! You see this all started from one small donation that led to something big. Every donation we get counts...every $1, $5, $20, or every shirt bought. Rhizo Kids requires an annual budget of about $90,000 now. We are only bringing in about $60,000. We aren't going to be able to continue on this path for long. When my sweet Ian died a large part of me died. I wasn't able to continue doing the things I had done for Rhizo Kids. My heart was shattered and I was doing good to put one foot in front of the other. I dropped everything in Tracey Thomas' lap and I ran! I did the minimal to get by for Rhizo Kids and I tried to let my heart heal. The truth is I'm a mom who has buried her child and there is no cure for that pain. Running from Rhizo Kids wasn't the answer...Tracey has went above and beyond for Rhizo Kids and has made it an awesome organization. She applies for grants and has a lot of support from Honda. She has continued all of this work even after losing her precious Jackson. She is a hero to me!!! So this year for Mother's Day instead of just looking at Tracey and myself and thinking"Man I feel sorry for them! They have to endure this day without one of their children!" Will you do something for us that will make us smile on Mother's Day? You can buy a new Rhizo Kids shirt or send a donation to Rhizo Kids in our child's honor. We can't hug our boys anymore and we can't whisper "I love you" into their ears. But we can continue our work for Rhizo Kids in their memory and still be their MOMS! It will crush the Rhizo Kids organization if we aren't able to meet the monetary obligations that Rhizo Kids has now. This is all we can do for our boys in this life now that they are gone and we need your help. My uncle never knew what his $150 donation would do for Rhizo Kids...he never dreamed it would be this big. Maybe your donation or shirt order or help at our conference will be the next driving force for Rhizo Kids. Tracey and I will wake up on Mother's day this year and we will survive the day just like last year. It won't be a day all full of smiles...inside our hearts there will always be the missing piece but we will be able to make it through the day knowing that we are still doing something for our boys by keeping their memory alive through Rhizo Kids. This is our new shirt design we are selling. You can buy one for $15. They are gray and we can get them in infant sizes up through XXX. You can email me at maryellis96@yahoo.com for a shirt or you can contact me on FB to order one. If you would like to mail us a donation please email me and I will get you our mailing address. Thank you for your continued support!

Walk by faith not by sight...

So much seems to happen in our lives between each blog post. I guess it's because I go 2 months without posting now. I would tell you I will do better but I'm not going to lie. Our lives are crazy busy right now and plans change every day around here. I have tried to quit planning because every time I do God changes them...when will I learn :) Our adoption journey is...what's the right word...umm...kind of changing?!? Wae and I decided we wanted to take ourselves out of the planning. We decided "word of mouth" was going to be the route we would go for now. You know so we had no control over the situation. Ok...I will be honest. It's so I don't control the situation. We all know Wae isn't doing the controlling here. He is seriously patiently waiting for God to lead us instead of us trying to lead God. We have told a few OB/GYN doctors and nurses that we are interested in adoption. We have told all of our families and friends and I have obviously told our blogging world family as well. We have been praying with full faith that God would lead us to our baby through this method. I have made a book on shutterfly telling our story which shows our family life before Ian, during Ian, and after Ian. It explains the many ways God has called us to adoption and we plan to give those to a few doctors. Is this the route I originally told God I was willing to pursue? (insert laughter here)No it's not! However, this is where we feel like we are supposed to be going right now. I am not going to give all the details of our adoption journey right now. God is leading us in a way that is far too big for me to type on this blog. He is connecting us to people who only He could connect us with. He has given us a vision...the vision is being refined not changed. He is simply adjusting it to His will for our lives. We are totally following His lead right now and the only way I can describe it is that we are walking by faith and not by sight. It is as if there are hundreds of people praying for this God ordained vision we have and God is listening. He is answering and He is leading Wae and I down the path He has laid out for us. It is not what I originally visioned. It is actually terrifying just to be honest. However, something amazing is happening. Something that can come only from God. Wae and I are at such peace with the direction we are headed. We are so happy and honored that God is trusting us enough to allow us to be a part of a much bigger plan than we had dreamed. From the beginning of this new path we started my prayer has been that God would give Wae and I the same convictions...that we would always be on the same page. I read in a book that visions thrive in an environment of unity and die in an environment of division. I know if we don't stay on the same page that this is not the path for us. It's crazy how "together" we are right now. So you might be asking yourself...why is she sharing this but not telling us all the details?!? I just can't right now. But I shared because I believe many of you have prayed for us for years. I believe many of your prayers were answered and that's why Wae and I have our healthy little boy Asher. I believe you all love our family and have prayed without ceasing. We need your prayers now again...This path is so new and we just don't know where it will go. There are so many options and we need you to pray for discernment, unity, love, understanding, and I know you aren't supposed to pray for patience so be creative on that one. I need patience right now though :) We are walking by faith and not by sight and I pray God helps me each morning to continue walking by faith. The devil easily knows how to distract me and is trying to sidetrack this God ordained vision. I need prayer to remain focused on the path set before me. I don't know where we are going...I don't know if it's a "Maggie" we will be getting. Maybe it's Maggie or maybe it's another fun little boy. Maybe it's an option far from a new baby girl or baby boy. Maybe our "adoption" vision is larger than what we saw as adoption in the past. Thank you for your prayers. I believe they are one reason we are where we are today. Now a little update on Asher...he's a mess y'all. His favorite sayings are "4..5..6" (I have no idea why) If you say anything about time he says "10 minutes" in the sweetest voice you've ever heard. He calls himself a cowboy and a donkeyhead thanks to his pops! He loves to pray "God our father praise Jesus!" He lists 300 prayer requests at night and prays for them all. He had his first injury...he fell on the edge of the rock fireplace and it immediately started gushing blood right above his eye. He had to have that glued up. Mommy cried...no I panicked and totally freaked out! He loves to hug, kiss, and snuggle and yes he uses all those words. He comes to me and says "Rock the baby mommy!" And yes I drop everything and rock the baby. He says "Hold you mommy. Hold you!" This means he wants me to pick him up. He's a momma's boy and I love it!!! He has about 6 girlfriends already and is only 2 1/2 years old. I'm a little worried about this. He had a date for Valentine's this year :) He has the sweetest heart...if he thinks he did something wrong he says I sorry mommy I sorry! He is not all good all the time though...he is a ball of energy and he wears me down somedays. He never stops and talks 24/7. Half the time you have no clue what he's saying but you better figure something out b/c he won't stop until you recognize him :) He unfolds all the laundry I fold and laughs every time. He laughs a lot, he loves big, and he snuggles tighter than anyone I know. He's my heart! I love him with all I have and I"m so thankful he's mine.