A new year

We made it. Today marks the new fiscal year for my employer, which means that all of our benefits begin again. I ended last week with zero sick time left. Zero. Talk about panic when it comes to having 4 children where only one illness can bring a game of dominoes. I start today with 80 hours of sick time to be used in the upcoming year. Thank.You.God. The new year is here and it's a fresh start.

Those who know me know how much I love light. And warmth. Summer is, for me, the perfect time of year. It's the time to play together and rest together. The academic year is done, which brings a sense of relief. Huge relief. Especially after this past year. I think back and shudder at all that has happened. But more than that, I rejoice in all the mercies that happened along the way. We were provided for, by God and by friends and family. We were carried through. Mia's school year ended by her new first grade teacher reporting "she's not making benchmarks" and the school special education department asking to do further evaluations for her in September to give her more services that she needs. Talk about a contrast from only four months ago when her previous teacher said she sees "no disability". Lianna also was identified as needing continued help for her dyslexia, and in no way should services decrease, but increase. If we had not gone through the struggle of this past year, none of this would have come to light for either of my precious girls. Huge, huge, mercy. Mia and Hannah Joy's transfusion were able to happen as scheduled. Every single one of them. Despite coxsackie, influenza A, and random fever illnesses, not one needed to be rescheduled. My fellow thal mamas, especially those who are treated at CHB will know the significance of this. Huge mercy. I still have a long road with Mia. I have yet to set up the endocrine testing and appointments needed to start growth hormone. She will need a full body MRI, bloodwork, a hormone challenge, consults with several specialists. Given the enormity of this, and the fact that I am at the point where I need to recharge, I will begin scheduling these things in August. Part of me feels guilty about this, and part of me feels that I need to allow myself a break by just focusing on the thalassemia care for the summer rather than the Russell Silver syndrome and thalassemia. I choose to give myself that mercy. We have been welcomed into the Russell Silver community, where fellow parents can share the joys and struggles of parenting children with this condition. Another huge mercy. Despite all that was happening in our family, Katelyn did incredibly well managing the transition to middle school. She made wise choices with friends. She had perfect attendance. She played on teams for soccer and basketball. She loves youth group. She ended the year with a 4.0 GPA. Mercy. And Hannah Joy, oh my sweet baby girl, is thriving. This year began with something no child should ever need to experience. She was taken from all that was familiar to her. Familiar people, sights, smells, sounds all gone. Removed from her second set of parents, and placed into my family. Her year began with loss. Such a huge loss. Grief. And yet, she trusted. She expected to be loved and cherished. She soaked it in, over this past year, and she has thrived. She is much more secure and confident that she is here now and will never have to leave again. She is trying to believe that "mama never never leave me. Mama always always come back", words that she says each night as she falls asleep next to me. Another enormous mercy.

Our new beginning is here. As a family we will bask in the light and warmth. And try to get some rest. Talk about mercy. I cherish that one, and will look forward to what this next year will bring. I look forward to all of it. The joys, struggles, and mercies.