I LOVE my kids birthdays. For me they are a time to look back and reflect on the year past and think about the year ahead. I get a little emotional as I see time flying by and while I cherish and celebrate how big they are getting, new milestones and accomplishments, and how they have grown, I also wish time would slow down. I'm very aware that there will be a time when they are all gone and the house will be empty. It's odd in some ways to know that the "baby" is FOUR. Wow. I don't know if I ever thought the day would come when the "baby" was no longer a baby. I knew there would eventually be a last baby, but it was hard to picture that day.
So as we've led up to this beautiful girl's 4th birthday I've been reflecting on where we've been, where we are now and where we are going. In some ways, this has been he longest 4 years of my life. Nothing has gone according to plan from day one...and that's starting with the day I found out I was expecting. What a surprise that was; so quickly after Rosalia was definitely not my plan. Then she was exactly 2 weeks late, but by then I was more than ready for her to join the family. Then hospitalized at 10 weeks with a septic UTI and that was just the beginning of this journey. A journey I often don't feel equipped to travel, much less lead in any capacity, yet that is where God placed me. Right at the front trying to navigate a world I'm not familiar with, fight battles that have no end, advocate for a tiny little girl, all without a road map or guide. It's like traveling a winding road in the dark with no lantern. Yet, I need to keep pushing forward because if I don't she has no hope of a future.
Last year on her 3rd birthday, I had hoped so much that we would be further ahead than we were then and than we are now. In reality we've made almost no progress this year. The GI, feeding and growth are still the biggest issues and still we have no answers. To say I am frustrated, worried, scared and feeling helpless would be an understatement. I'm sure no one notices, but me, but she is still the same size, wearing the same clothes, as she was a year ago..and the year before that too. She is slightly taller and I think her feet may have grown a full shoe size, but that is it. Her weight is the same as it has been for 2 years now and now she's just thinner than before. It truly worries me; what damage is being done inside that we can't see. Aside from the feeding issues, most other things are stable...she's still tired and fatigues easily, her joints still hurt, etc, but it's not worse and for that I am extremely thankful.
The area of biggest improvement is her anxiety and SPD. It's nice to know we can leave the house and I am fairly confident we will both survive. I've learned her subtle signs and can intervene fairly quickly now and salvage the situation.
Through all of this, that smile in those pictures above tell it all. I am so thankful she's happy and joyful. Some days it takes a lot more to find, but it's always there. We prayed so hard for the perfect name for her and Beatrice was it. I believe more than ever that her name fits her perfectly. "Bringer of Joy" and that she is. Despite every thing going on in her life, the struggles, pain, delays, etc she smiles and she loves and she is so sweet. She really does bring joy to all of us. She is incredibly funny, she's fresh and mouthy like Samuel was at this age and she loves her siblings. Augustin seems to be the current favorite and he's great with her. She still loves to snuggle with me and while I sometimes wish she was more independent, I do love when she sits and snuggles and I try to remember that one day she will be too busy.
As I look ahead to her 5th year, I pray that we actually find some answers this year. Answers that have solutions to help her thrive in all areas. I know that there is no cure for EDS and that her life isn't going to be what I imagined it would, but I pray we can find ways to make her life as "normal" and healthy as it can be so she can reach her potential, feel good and continue smiling.
Happy Birthday my sweet Beatrice. If you only knew how much I love you. When I was so worried about having another baby so close together a wise friend told me "she will be one of your biggest blessings" and how right she was. I have no idea what any of us would do without you and your beautiful smile and huge heart. You make us smile and laugh every day. I thank God every day for the gift of you in our lives. It has been some of the hardest years, filled with so much worry, heartache and emotion; definitely nothing I could have imagined, but even if I knew what life had to in store, I would choose to do it all over again, a million times, just to have the honor of being your mom and having the chance to love you. God has big things planned for you and I can't wait to see where you are a year from now.
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