***After typing I am back to the beginning thinking I should post a warning. Today has been a hard day for me emotionally. This isn't an upbeat post at all. Know before you read so if you don't want to hear it, you don't have to go any further. It's hard sometimes to know what to share here. I want to be honest. I think that sharing the struggles has helped people to really be able to pray for us - and that has made a HUGE impact on our family!!! I also want to share the joys. I love Eliana so very much! I think she is beautiful and am so thankful for her! I guess I just want this to be real - the good, the bad and the ugly. I'm so thankful that I'm not walking this journey alone. I know that our Father has carried me a lot and I'm still learning what it means to just relax in His arms day to day.
I keep wondering if I'm supposed to have "moved on" by now? Heart surgery is complete - and a success for which I'm soooo very thankful. All of these months in crisis. It was hard. Very, very hard. I have never been through such a dark, scary and lonely time in my life. It was often more than overwhelming. I know that without the support of God, my family and my friends, I wouldn't have made it through. All of the many many prayers lifted for our family. It still touches my heart tremendously to know how many people have loved on us - through prayers, acts of service and words of encouragment.
I think that for so long I was waiting for surgery to be completed. Then ... I could do things again. But, here it is and it just isn't what I expected. I'm so very glad to be on this side of surgery. It is MUCH better on this side. Much! Though it isn't easy yet. I know it hasn't been long. She is still recovering. She still has a feeding tube. I think that one of the hard parts is that even though her heart is repaired, things aren't just "fixed". There is still a lot to learn ... a lot to handle ... a lot to deal with. Too much for me. I'm glad I'm not walking this road alone.
For the last 4.5 months, I've been dealing with cardiac issues. It really has been so HUGE. I haven't had to face Down syndrome so much. I haven't read that much or even looked into it as I just needed to deal with her heart. Well, now I need to start figuring out new things. Part of me just wants a break! I just wanted a little time to relax. I'm not going to get it though. Or maybe I need to find a new way to get it.
In the early weeks after she was born, I often reflected back on what I called my "last day of normal". It was Dec 14th and the children and I were on a field trip to an art museum to see the monet exhibit. I love field trips and we typically go on one a week. After the field trip, we went with a lot of our friends to a nearby park to picnic, play and have fun! I remember being worried about labor and having a friend tell that since I wasn't "ready" that I probably wouldn't have the baby any time soon. Ha ha! I remember someone commenting on how well I looked pregnant. (The last months are always better for me.) I remember it being a full, fun and memorable day. Little did I know that the next day would be the start of something life-changing. I really wasn't expecting Eliana to start making her entrance the following day. (For those that didn't know, I woke up at 5am sick. I continued to be sick - very sick - through the day. I finally called Roger to come home. I went to my OB who admitted me to the hospital. Very dehydrated and contracting. Not a fun way to start labor.)
Since that time I feel like I've aged a million years. I often think I look it too. I've also cried most days - and on some I've cried buckets and buckets of tears. I've never been one to cry easily and I wonder if I'll get to a point where I don't cry so often or so easily.
Today it was dealing with feeding - and trying to figure so many things out. What is best for my sweet girl? I really want to do what is best for her. i wish that there was someone or some source with the answers. Maybe there is, but I don't know where to find it. Little things that if not handled correctly (feeding issues) can have much bigger consequences for Eliana.
Also dealing with my sweet friend Catherine moving. She showed their house yesterday for the first time. Oh, on some days we can just pretend or not think about what is coming. Today wasn't one of those days. We want to enjoy the time we have left of living beside each other, but some days it is just sad. This isn't the way we thought things would turn out. We built houses beside each other after being best friends for 10 years. What a sweet privilege that has been for the last 7 years. We thought we'd grow old living beside each other. We didn't think they would move. Especially when Eliana was born, the timing just seemed so wrong. I really don't understand God's plan in all of this.
Life is hard. There is so much pain. So much heartache. Is this part of what makes us long for heaven? Life is so hard sometimes. God is good. When the "hard" part is overwhelming, I need to focus on the goodness of God. He never changes. He is love, truth and grace. We are each loved with boundless love by the creator of the universe. That is amazing!