Life...

Life, unfortunately, isn't usually fair. Nothing could be more true for Charlotte. This little girl has had to fight since she was born and still will probably never have a completely "normal" life. Just in case anyone isn't aware, my girl was born with severe macrocytic lymphatic malformation. Her abdomen literally looked like one of those starving children you see on those commercials begging for money. She spent a week in the NICU here in Jacksonville before being transferred to Orlando for 7 more weeks. We finally got her home with a feeding tube and on 5 or 6 medications the day before her 2 month birthday. We have seen five specialists at least and we still have to follow up with 2 on a regular basis. We're finally down to two meds...one that I'm fully compliant with...if I'm going to be honest...and we finally were able to start her at an at-home daycare last week. Working full time, even from home, and trying to find people to help out with your kid are NOT easy things to do! Even if you're not taking care of your child while you work, it's not easy to concentrate knowing their around! It seems, thankfully, from her last MRI that her abdomen is looking great and though she has lesions in her spleen, they still may not ever have to do anything about that. We're now looking at adding another specialist that we may or may not have to follow up with because her pediatrician feels like she has Klippel-Trenaunay Syndrome that will put her at higher risk for scoliosis and blood clots in the future. We'll go on April 18th to meet the doctor and hopefully get more information. She also has one leg that is longer than the other and the orthopedic specialist believes that the difference will become greater than one inch, so she'll have to have surgery at some point to put screws into the growth plates of her left leg to allow her right leg to catch up. Thankfully, this is apparently common in kids with her problem, so it's a relatively routine, simple procedure. Once her right leg catches up, they will go in and remove the screws. As a mom, I worry about both of my girls growing up to be happy, healthy adults that get to enjoy life. As a mom of a special needs kid...that isn't obviously a special needs kid...I feel like people don't understand the struggle. I know I surely never could have understood before having Charlotte! I truly know now that while parents of special needs kids don't want sympathy, it's nice to know that others are praying for you and your kiddo and that people care. I'm so grateful for our group of family and friends that are so faithful to pray for our family and check in to see how things are going. Just know that it's so appreciated! Our new "normal" involves doctor visits at least once every 3 months for the foreseeable future with others thrown in the mix. Please know that I am very aware of fortunate we are that Charlotte is doing so well, but I also still have moments of feeling very overwhelmed with worry and schedules! Even though I fully believe that God is in control, I can't help but sometimes have such a fear for the unknown future she has. With every procedure, there is risk. I worry that she'll have low self esteem because she'll always be different...even if no one else will ever be able to notice. Please just continue to pray for us and send your sweet thoughts our way because we still have a long journey! Please keep sweet Anabeth in there also because that precious girl worries about her sister almost as much as I do! I just pray that God equips Matt and I to be able to help Charlotte and Anabeth grow up with the love and self-esteem they need to make it through anything!

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