I can hardly believe it’s already time to start on our journey as we head to the Rhizokids conference. In a week we will be reunited with our Rhizo family and I will be snuggling so many sweet warriors in my arms.
We count down the days for this conference all year long and it’s finally here! Athough it’s a medical conference, it feels more like a family reunion. It’s such a sweet feeling to reunite with our family and it’s also so special meeting the new babies and families.
Being able to love on so many warrior kids that have my heart is a feeling that is unexplainable. This year just like last, will have a bittersweet feeling as we are returning to conference to all be together again but some of the sweet warriors won’t be in our arms this year but are always so deeply rooted in our hearts.
If you were to ask any one of us, we’d tell you this isn’t a group we would ever dream of joining. We’d never choose for our child to have RCDP. But let me tell you, we are so blessed to have this amazing group of families and fighters. None of us are alone in this. This group has become my family. I love each family, warrior and precious angel with all my heart. We fight together, we stand together, we grieve together and we rejoice together.
Here I am seven days out and I am still saying “it can’t come soon enough!” We leave tomorrow to head to Florida to spend time with family and friends before we go to conference. I love taking Jude to my hometown (Pensacola, Florida) and showing him where I grew up and all the things I love. We will be gone for two weeks total.
Please pray for safe and smooth travels. It is a long drive and Jude has a hard time being in the car for long periods of time and it has caused him back pain and his seizure activity to increase. We try to stop and let him take breaks and we even stop and sleep halfway if he’s really having a hard time. He’s such a good boy and loves going places and car rides but you can imagine how a long trip can be on him when it’s hard on us.
Even before Jude was born we knew he would need round the clock care and we would become a one income family. This time of the year is very difficult for us as the trip is expensive and Sully will be taking time off work to go and be with us. If you feel led to donate to our trip, you can do so on our Crowrise. We have been so blessed with amazing support from all of you and we can’t say how thankful we are. Every trip you made possible and vaccine you funded has blessed our family more than you could ever know. Thank you, Jude’s tribe! We truly appreciate your love, prayers and support ❤️ #HOPEforRCDP #HOPEisEVERYTHING #strongertogether #judesjourney #judestribe #prayforjude #rhizowarriors #bravelittlewarrior