You know it's not good when every medical professional you talk to asks how you are doing. They don't just say those words in the form of a question, it's the look on their face that communicates what they mean. They lean in with concern in their eyes, some of them maybe even have tears. The often tilt their head slightly to one side. And they ask in a soft, quiet voice, "How ARE you doing?"
Ugh. I hate that they have to be asking that question in the first place. Never have I had so many people ask about our mental and emotional health. And sometimes it's scary. On the days that I'm doing well, I wonder if I should be doing worse than I am feeling at that moment. Am I missing something? Should I be more of a mess? I just don't know... Other days I feel like I am pretty true to form and am just not feeling ok with the way things are. Those days aren't too often, and seem to be much less than they were at the very beginning. (At that time, I almost wanted to look horrible just to reflect how things were going. It's awful to be getting constant news about your child, and everything you're told is bad news. Those were dark days that I am thankful we are mostly over, at least for now.)
To be honest, I am just not sure how to respond to it all. I don't know what to say to people who, in reality, don't know what to say to me. Should they say they're sorry? Do I want them to say that? Do I want them to be sorry? Not really. But kind of. I don't know. Should they acknowledge that things are different, hard? Because it is pretty obvious... Should they be happy for us? Of course!
We are starting to settle into things, as much as we can for now. I'm sure that things will constantly be changing (but don't they always with a newborn?). I am looking forward to really feeling like we are in our new normal, whenever that may come. I hope it will be relatively soon. But I am also just so scared about the future. Mostly because it is so unknown to me. What will she be like in a month? In three? What will it be like when seizures start? During the winter/season of sickness? What about when she's bigger/older and needing more specialized equipment? Will we even make it that far? Should I even think those thoughts? But how can I not have that in my thoughts at times?
We have been so blessed by so many who have been touched by "our story". But, to be honest, sometimes I don't want a story... I'm not saying that I would trade our girl for anything in the world, but I hate that we have to have a story in the first place sometimes. It's hard to explain. It's not that I don't want the trials and hardships, it's not that we are disappointed that our baby is "different" than what we expected. I just hate that there has to be so much pain in the story. And it's only just begun... I hate that the story will involve pain and trials for our little girl, for the big kids, for the rest of our family and friends. But I know that God is working through her already. He HAS to be.
Every time I read your posts like this it takes me back to when we were where you are with waverly.... In the beginning of it all. Joe and I have conversations that mo parents should have. How did you like dr Tamez? I am so glad she will be getting her button soon!
ReplyDelete*sigh* Our stories are different, but this resonates in my heart. Praying for you as you some days trudge, some days walk, some days even skip through life. It's okay for it to look different each day...it doesn't change your faith in God or His faithfulness to you. Love to you all.
ReplyDeleteMy Cristen,
ReplyDeleteAs I read this, my heart swells with love and pride (the good kind) for you, my first born. I continue to be proud of you, but now not so much for the "hard work" and "academic successes" that we were so proud of as you were growing up, but much more so, for the sweet, gentle and Godly woman you are. Oh, how I would love to take credit! But, I thank God!! It is truly a blessing to know that my grandchildren are being raised in a home full of love and a desire to be pleasing to our Father in heaven. To know that they are being and will continue to be pointed to Christ every day of their childhoods. We love you all, and we love Waverly so much. We share the same feelings...the joy; the sorrow, all of it, yet we love Waverly for who she is, exactly as she is, just as much as we could ever love any grandchild ever! In fact, we absolutely adore her...(but I think you know that already).
Thanks for sharing your heart. Proud of you, chama.
ReplyDeleteCristen,
ReplyDeleteThe dreadful How are you doing? People really do care it just puts you in a category with a story....so beautifully writen. Laugh when you want to, cry and be mad when you want to...we have to choose to live and life just throws good and bad days...unfair as it is. Try to just live life for today or even sometimes just make it thru the minute...you'll drive yourself crazy wondering what you are going to do in the future at least I did. And it all came down to this....God is good regardless of what I am going through and if He is good then I can trust Him today tomorrow and forever. He has to work out the problems not me... All though our stories are different I can relate with the emotions you were writing about. Your an encouragement to many with your faith to be real and honest in the most raw vulnerable spot in your life.
Thank you for sharing your heart so honestly. We continue to pray for you and your family!
ReplyDeleteThanks for sharing your feelings so openly and honestly. It is certainly an encouragement to me.
ReplyDeleteAs one of those people who never knows what to say and wants to show concern but not pity, I'd say an honest answer is the best. Don't be ashamed of having a good day "despite it all" and don't brush it off if you're having a rough day. If they didn't mean it you'll be able to tell quickly, and those of us who do will understand if you're choosing not to let it get you down today (or if you are).
ReplyDelete