***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!
With love,
Leslie
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No great words of wisdom dear friend. Only a big hug. I pray that today is a better day for you. You can only move on from your grief when YOU are ready and when it's time for YOU. Don't pressure yourself to move on. It's a process.
ReplyDeleteLove, Karen
You know, it's pretty common for cardiac patients to undergo depression following surgery or a cardiac event. I remember when my dad had coronary bypass surgery, several months later I was talking about their wedding anniversary in a few years (a 35th or some significant anniv. like that) and he said, "Well, as you know, I may not be here 3 years from now." I really think that for several months after surgery, he was expecting a shortened life span. (BTW, that was 15 years ago, and he turns 70 this December, is mentally acute, and works a full day, so I think it was the post-surgery depression talking.)
ReplyDeleteMy point in relation to you? Well, I think you're having your own post-surgery depression of sorts. Eliana doesn't carry the emotional burden, you do. And it's wearing. How can it not be wearing? I won't pretend to advise you on how to "get over it." I'm sure you can think of scriptural ways to attack it, and I hope if it persists that you have those around you who will encourage you to get any kind of other help you might need.
But I think for now, it's not at all unexpected. I think it would be completely understandable for you to still be working through the grieving process of the DS alone, even if you hadn't been dealing with the cardiac issues full-force.
While I certainly understand you want to feel better, and the sooner the better, I also want you to know that it's okay if you're not happy all the time. You are not a bad Christian if you are not happy all the time. You said it yourself, life is hard. Would we turn to Jesus if it were always easy?
I do hope for your sake that you will soon see a light at the end of the tunnel and feel a lifting of the stress and sadness. :group:
Praying for you Leslie. I am so sorry you are having a hard time and wish I could come over and let you cry on my shoulder.
ReplyDeletePraying for you my sweet friend.
ReplyDeleteI'm sorry today is hard. Isn't it funny how during a time of sweet laughter you can get a glimpse of 'normal', only to have it jerked away the very next morning?
ReplyDeleteI wish I could be there IRL to help you in some way!
I can pray.....and I will!
Love ya!
Lisa Schaffer
I wish I was there, right now. I would love to be able to help somehow, but I am not sure I could fix anything--even your hurt feelings today. I do love you!
ReplyDeleteYou have always been so "together" and for anyone on the outside, you have handled this situation in the same way. You have been strong for your baby, you have been a wonderful mother to the others, and believe me, they are learning something precious through this time that a million books could not have taught them.
I don't know what to say. I am sorry to hear Catherine is moving. You all have been two peas in a pod! Life certainly has chapters, though. I have learned that. Some chapters bring buckets of tears. Some chapters we would never, ever choose on our own.
I hope the next chapter for you--which won't be far off--is full of sunshine and happiness. And easier days for Eliana.
Lynn
Leslie, you don't know me. I am a first cousin of your father-in-law. I want to tell you we are praying for you and all your family. You have quite a burden now but God doesn't give you a load without giving the strength to carry it. He will reward you. My only son's name was Roger and we lost him to an accident when he was 23 yr. old. Our youngest daughter Miriam has been married 12 years and is unable to have children. We understand grief and we also know that God's grace is sufficent!! I admire you so much, your strength, your patience. Be patient with yourself as well. Kathy Stafford sent your blogg address. Thank you for your journaling. I have been so anxious to hear how it is going. Because we care so much - My bible study is praying for you - God is good!!
ReplyDeleteBecause of Jesus - Carolyn Tenney Doerr
Father, please bless my sister in Christ today. Please give her strength and grace. Send your angels to minister to her. Encourage her and help her during this difficult time, In Jesus name.
ReplyDeleteThank you for being so real in your post. I think it takes a lot of courage and strength to do that. It also really ministers to others, encouraging them. Bless you.
Sorry, I meant to mention, my name is Tricia. You can see more about us here: www.unringingthebell.typepad.com
ReplyDeleteI just wanted to say. I truly understand. My daughter, georgia was born on December 18th with CHD (surgery scheduled June 4th) and we are doing the NG tube and having all the similar issues. Have faith.....I am so glad you are past surgery.
ReplyDelete