My name is Erin and for those that don't know me I just lost my little girl Sarah on the 24th. It was kind of expected as we were diagnosed with Trisomy 18 around 18 weeks into the pregnancy.
Having children seems to be a roller coaster ride for us. I've had multiple m/c and our first daughter Emily was born as a VATER/VACTREL child. She has heart, kidney and spine issues. She had her first open heart surgery at 8 days old. Since then she's had multiple cath procedures and just recently had her 2nd heart surgery. I'm happy to say she's doing really well right now. For that I'm very thankful.
As far as Sarah - she was a beautiful soul. As much as I know she's in a much better place and that she gave us 2 days with her - which is more than most people with this diagnosis get - I'm still missing her.
I know some of this is grief but I'm really hoping that some of this is hormones. It seems that everytime I get time alone all I do is start crying. Heck - I couldn't even call my good friend because I knew I'd sit and cry and thus make him uncomfortable.
Em is 3 and I've explained to the best of my ability to her about Sarah going to Jesus. Just not sue how much she's getting.
I just hope I can get through this next weekend. That's when we truly say goodbye.
I am so sorry for your loss and all that you have been through. I am glad you had some time with yoru daughter to cherish forever.
Kids are smart and know what is going on and I think it is good that you are explaining things to her in simple terms. They grieve just like us, but at their own level.
((((HUGS))) I'll be keeping you in my thoughts and prayers this weekend. I'm so very sorry for your loss but so very grateful you were able to have that time together as I know that is truly cherished moments.
I do believe that the pregnancy hormones play a role in amplifying the grief process. Also natural is the very real grief journey you are under along with it being a traumatic time both during your pregnancy and of course following your loss. That is a tremendous amount for your body, mind, and spirit to heal through. At your stage - granting yourself permission to cry may be more what is needed vs. trying to "control" your emotions... as many times it is impossible to do so.
Right now, the best advice I have is to do what you can to take care of yourself physically as you are still in the postpartum stage. Also, focus on short term goals... for example as you are on getting through this weekend. Keep talking and sharing as much as you need to -- and know it is ok to be silent at times if that brings you some comfort. Em will certainly provide you with distraction as needed but you can also reach out and include her in finding ways to remember Sarah's life. Think of this as a journey, with no clear timetable and no right /wrong ways to travel. You will find your personal path towards healing in time.
Please do let us know how you are when you can.
Well I made it through visitation last night without too many tears. But today is going to be tough, it's the day we bury her. I'm trying to keep calm for Em, but I've told her it's going to be a sad day. How much she gets - I don't know. But I've asked that the service be a celebration rather than sad.. we'll see how it goes.
I still have my moments of crying.. but keeping busy is helping a little and definitely being home has helped.
It was a beautiful graveyard service. Small and intimate. Em being Em was running all over, until I hit a point where I started crying and then she calmed down and was comforting me. I didn't think she really got it until we were leaving she called out twice "bye Sarah".
So now life goes on...and that's a good thing. I still have to recover from my surgery and get us back on the path of being a family again. Now that I have time off from work I'm going to concentrate on my family and enjoy the time I have with them.