A huge thank you to my husband, @Josh Ramos, for the way he beautifully led our family and honored our daughter. The video quality and zooming is a little off because its recorded on a phone but I’m so grateful a friend of ours thought to capture this. We didn’t think to ask to have the seevice recorded, and we didn’t honestly want the entire thing recorded. However, I am glad she captured this. #bereavedmother #grief #celebrationoflife #lissencephaly #medicallycomplex #griefandloss #griefjourney

Has anybody else felt this in their grief journey? I felt it a little bit when we first found out about Marsaili’s complications and after my c-section, but I am surprised how much more strongly I feel it now. It’s not so much frightening as it just is discouraging at times to look in the mirror or at pictures and feel as though nothing looks or feels “right.” Seeing past pictures from years ago is especially difficult. Have you felt this before? If so, how did you navigate it? #grief #griefjourney #bereavedparents #bereavedmother #childloss #lissencephaly

The fatigue is unreal. I used to feel it after every hospital stay when we returned home, but this is so different. In the first week after Marsaili passed, the adrenaline was still high. We had so much to do. So much to plan. Then, once the services were done, her ashes were home, and we were all beginning to settle in to whatever our new “normal” would be, my body began to crash. Over the past two weeks, my body has craved sleep. I can’t do many tasks for long before I’m back on the couch again. More often than not, I am frustrated with this. I want so badly to do more, but my body says “no” very loudly. It’s hard not to feel weak in these moments - to feel lesser than. For those of us who have been caregivers for extended periods of time, this fatigue can be difficult to accept as part of our grief because it looks so different than what we have experienced in grief before. It can be challenging to recognize ourselves and to give ourselves that much needed rest without shame. And that shame is two-fold: 1. After years of pushing and pushing and being told how strong we are, it hurts to feel the limits of our humanity so deeply. 2. It hurts to acknowledge that our sense of safety came after such a profound loss. In many ways, that safety feels undeserved. I find comfort only in acknowledging the truth that Jesus calls us over and over again to rest. Especially in times of tremendous grief, He calls us to lean into His strength and find comfort in His arms. I imagine that in her perfectly healed state, Marsaili looks down on us and hopes that we will unashamedly do just that. It is ok to rest. #grief #griefjourney #bereavedparents #bereavedmother #childloss #lissencephaly

This first week since the loss of Marsaili has been a heavy one, but we are not people who grieve without hope. This Easter season, this Holy Week, is one that has been especially significant for us in our season of loss, because without the death and resurrection of Christ, that hope we hold in this grieving season wouldn’t be possible. The confidence we have in Marsaili’s healing and peaceful rest with our Lord is possible because Jesus died for the sake of our sins and rose again victoriously over the grave. Yes, our daughter is no longer here, and we grieve her loss tremendously. But our God did not fail. He didn’t fail us at the cross and He doesn’t fail us now. And that is a testimony we are humbled and grateful to be able to tell. #lissencephaly #bereavedmother #grief #childloss #childlossawareness #christianwomen #Heisrisen #Jesus

We love you all, and in the midst of our sorrow, we remain grateful and hopeful. We believe in a God who sustains, and we are confident He will carry us in our grief. Thank you for your continued support and prayers.