What I write tonight is real and honest. It could be considered ungrateful and upset people, though I sincerely hope I will not. Especially those who have lost a child. Oh how my heart aches for those people and I hope and pray for them. I hope I can express myself adequately enough to explain my emotions.
I am not the same person as I was.
I feel like I am a better person in a lot of ways, but I also feel like I am different in ways that I don’t really like. Solemn comes to mind.
Ruby was born. Pure Joy. Ruby had a heart defect. Utter Sadness. Ruby needed surgery. Total Devastation. But people prayed. We prayed. We got through it and Ruby did as well, with flying colors. My relationship with my family, friends, and most importantly with Heavenly Father became so very wonderful and treasured and I needed each and every one of those people. I felt peace. I felt happiness. I cherished my family so much more than ever knowing that things could change so quickly in the “heart world”. There was a lot of joy, but there was also a lurking fear, always waiting to pounce in the quiet hours of night. Mostly when I was alone. The fear of losing her. The fear of how on earth we would handle that, how could my other three children live without their favorite person in the whole world. I emphasize the peace we felt so often because it was so real. It was so real. I could NEVER deny how blessed we were during Ruby’s first 6 months of life and how we are continually blessed.
I met other families going through similar situations. And then I heard story after story of tragic loss. So many triumphant and happy stories, but always, always ones of great sadness. The research I did was much the same. You run into hope, only to also run into tragedy. I allowed myself to imagine those places of sadness many, many times. I still do far too often.
Things worked out with Ruby. We are so so so blessed to have her. It is the greatest relief and we are soaking up our time with her. She is our sweet miracle and our family is closer because of it. It is so nice not to be worried when she cries for longer than a minute. So amazing she’s healed and rolling all over these days. So wonderful to hear my kids pray and thank Heavenly Father that Ruby is doing so well.
Then why do I often feel sad?
I have my baby. I have my miracle. We had an outpouring of love from so many people. Even strangers. Things worked out. We were blessed as much as we possibly could be. What on Earth could I be sad about? How ungrateful could I possibly get? What is my problem?!
Basically for 7 months, life was not normal. Weekly doctor visits. Echocardiograms, blood draws, EKG’s, weight checks. Is she gaining enough? Is she eating enough? Is she too sweaty? Is she turning blue? Don’t let her cry too long, she could have a blue spell and surgery moved up. Will she need medicines? Will she need oxygen before surgery? So many questions. So much “waiting it out”. When will surgery be? Will she only need one? Will she survive even one? I even went so far as to imagine some purchased item lasting through her surgery—for instance a large bag of flour or new makeup. Thinking, “If we lose her, I will still be using this after. And that will make me sad, using something that we had when she was alive.” I sound like I was a crazy person, don’t I? But apart from those fleeting moments of fear and sadness, I feel like we were so blessed to handle and enjoy life.
Why then, when life was so crazy and unpredictable, did I manage fine? Why was it that when I feared I would lose by baby, I could be strong and have faith that things would be ok no matter what the outcome?
Why do I get to keep my baby when someone else has empty arms ? My life is normal and blessed and full of wonderful things. It just doesn’t make sense. It seems backwards. How can I not constantly be shouting for joy at the outcome of our trial? Please know that I really am so overjoyed and immensely happy with Ruby’s outcome after surgery. It brings me to tears just thinking of how blessed we are to have her.
I brought up this subject on the private Facebook group of heart families tonight. I was so nervous to click “post”. So worried I would upset someone who has lost a baby. I was met with such love and understanding. So many of the moms felt similar emotions. Sad for no “good” reason. Many mentioned PTSD. Some mentioned survivor’s guilt. How thankful I am that I have those wonderful people who are so empathetic—and yes, even some who have lost their child responded so kindly and with understanding. Isn’t that one great thing about trials? To be able to help one another because you really do get it?
I think another problem of mine is that I thought after her surgery, if she didn’t have valve work done, that we would be free and clear. I didn’t even think about the worry I’d still have. My heart sank when I read recently that other long-term problems can happen with Tetralogy of Fallot even after repaired. I selectively chose to not remember that part when we very first met with the cardiologist, because my husband remembers them saying similar things and I do not.
It hit me so hard one night when I was talking to Dillon. I will always worry about her! She will hopefully be totally fine for the rest of her life and I’m sure we will continue to be blessed with peace. She might never need surgery again. She will see a cardiologist every year for the rest of her life. That way, if things change, they will catch it hopefully in time to treat it with medicine or heart caths rather than another open heart surgery. But what if she’s playing somewhere and falls far, and hard? They told us no contact sports or anything that could make a strong impact force. But then I hear that Shaun White was born with Tetralogy of Fallot, like Ruby, and look at him!! So hopeful. And really, I worry about all of my kids. Thinking so often of families longing for one of their children has really opened my eyes. So I need to just let go and trust Heavenly Father. Because life can change in an instant for anyone. Not just a baby with a CHD. So I need to remember to enjoy life and live it. With love and joy and yes, even the emotions I’d rather not feel because they will probably help me be a better person if I don’t let them paralyze me.
I guess my point is this: it’s hard to return to normal. It’s hard to go back to “normal” life, as silly as that may sound. There are demands and expectations that start right up where you left them. And they are in full swing around here. And though I am extremely happy that we are back to living normal, it’s interesting to adjust to it and I hate feeling sad when I feel I have no reason to be. Is it strange to say how happy I am and how sad I am, at the same time?
(((HUGS))) I think it is totally normal to feel this way. We are all here for you, so please keep sharing!
i had similar feelings after the birth of my son. i almost lost my life. i fought for months and thankfully made it. but i had so many fears and a sadness that i could not explain. i also suffered from PTSD. it took me awhile to finally understand what was going on. i called my doctor and she recommended counseling. it took months of counseling but i feel drastically better. i still have issues at times when it comes to anything medical. you are not alone, but i would recommend talking to your doctors. when you are going through such a tough time like that your body is in survival mode and it is a hard thing to come out of. hugs! you are not alone:)
lots of love sent your way. Remember it is ok to feel.
I know my experiences aren’t even close to what you have gone through, but know that I am thinking of you! I think what you are going through is normal. I think replaying, and going through all the emotions you are is the way we process traumatic things sometimes.
Everything you’ve said is normal. It’s just not the old normal. And that’s OK. It’s a new normal and you will learn to navigate your way through it just like you did the old normal.
Give yourself some grace and love your little girl.
You had to be strong so long that you are probably just experiencing all the emotions at once. I am sure whatever it is, it’s totally normal. Love to you and your family!
Thank you for sharing. There seems to be no way to return to the old normal and adjusting to the new normal is harder than anyone can tell you. If there is anything I have learned it is that the things we experience are a process–sometimes longer than we expect. The best advice I heard was “just feel what you feel.” If you feel sad sometimes, that is okay. Don’t dwell on it but allow yourself to feel. And always celebrate the happy times. Sorry if I hijacked your post with this long comment but it really resonates.
I believe this is similar to what our military experience when they come home. everyone around them is thinking things will just return to normal now.but that is not ever going to be. no one is the same as whatever amount of time as passed even if there were no traumatic events. throw in the traumas and everyone must now have a new normal. I believe what you are going through is having to dismiss that old normal and embrace the new one. and it is sad and you are totally permitted to be sad, it was a much more innocent time in your life. surely there are some good support groups that work on growth and not just hashing over and over the sadness.PRAY and our prayers are with you also. Gods best to all of your family
As a fellow Tet mom (the only blue Tet Micropreemie in the US to survive, to be exact).. I can tell you this. YES it is NORMAL! And btw feel free to yell at God, He is a big boy and can take it. I know I have ;)
Basically you haven’t had the time for the depression to hit till now… Happened to me too. My son is 4 next month. Eventually you will develop a “new normal” and you get used to it. You can only be stressed and worried for so long until life distracts you. I do suggest talking to your Dr though.. You probably do have PPD and/or PTSD. I have both from Christopher’s birth and subsequent NICU months. Forewarning, no one else will get it but her birthday will be hard for you to. This year is the first time we have passed his due date without me realizing it :). It gets better.
Christie ~ As a mother who did lose a child, I first want to say that there is nothing at all that you have said that should upset anyone who has lost a child. I totally understand the feelings you are dealing with right now. The “Why ME?” question we all ask of ourselves at one point or another in our lives can be used for the bad things which happen to us as well as the things which we have so thankfully overcome and then had the bad news be turned into a joyous thing. I know in my life I have had a lot of very trying times and it’s those times that have shown me just how strong us women can be, especially when it comes to our family and worry about them.
I cannot tell you that this time you are going through now with the happiness yet worry and concern will end. That may never end as you said. I hope that it will lesson a bit so you can enjoy watching your amazing child grow without any of those emotions of guilt you’ve mentioned.
I have written this about 7 times now and hope that anything I have said did not come out wrong. I just wanted to say that I understand all the feelings you have. Just stay strong and give her all your love and know she has done such amazing things already in her young life already and she will hopefully continue to overcome all obstacles put in her way for a very long time. Enjoy her and all your children and know we are all still here praying for all of you.
BIG hugs to you Christie!
Not even remotely as difficult but my twins born 5 weeks early after 3 months of bed rest ended up in the ER: 1 at 2 1/2 weeks and the other a week later. My first one was rushed via ambulance from a well baby check and my other one immediately brought back to an ER room from triage. They were in the NICU for 3 and 2 weeks respectively. My daughter was intubated for 1 week. They are now 5 and just recently have I stopped having anxiety when they get a cold. (A little crazy on my part)! I can’t even pretend to understand what you must be feeling. All seems normal to me!
You are clearly not alone!
Our youngest has growth issues, and while not life-threatening, I always seem to worry about her. While scanning her brain to see why she wasn’t growing, they found a small Chiari 1 malformation, and also while not life threatening, I worry. “What if she falls??” Which she does all the time, incidentally.
I am also very thankful at the same time that it isn’t more serious, but sad for her also, that she has had to endure any IV’s and neurosurgeon appointments at all.
OK- I am clearly rambling, but all that to say You are a good Mama and you are not alone!!
~Michelle
I loved a quote from Downton this Saturday, “life is a series of problems we have to solve….” It is so true, unfortunately, or fortunately. Sometimes things seem to go our way and other times they don’t and who knows which way is actually “better” for us in the end. The fact is, life is always a bit of a struggle because it’s supposed to me. And though you’ve been blessed with an amazing solution for Ruby now there are still other things less than perfect and still the daily friction of life. It’s not ungrateful to acknowledge that. I experienced some of my greatest blessings along with my greatest challenges. I expected there to be big peaks and then big valleys but sometimes we hit both at the same time. Also I was remembering a time of great loss in my life and how supported I felt by loved ones praying for me and very likely angels attending me, and it may be that some of that has lessened now that the surgery has passed. You may be feeling the difference a bit. Whatever the explanation, be good to yourself, sit and hold Ruby, enjoy watching your family enjoy her. Love her and love yourself and you will find your way.
Mama, I am one who lost her CHD baby (HLHS) and agree that it is okay and understandable to feel this way. PTSD crossed my mind as well. I know it is something I have had to work through, not so much stemming from his passing, but from his third day of life when he was diagnosed and whirlwind that followed.
Anyway, the constant or near-constant stress of those long months can really take a toll. It’s okay to feel conflicted. I think it is safe to say that most of us who have walked a similar path, even if ours did end in loss, understand.
I am so glad your sweet girl is doing well <3
It’s refreshing to read such honesty. So few people have the strength to be publicly “real.” Thank you for sharing.
JoEllen, I’m so sorry for your loss–I cannot imagine. I appreciate you taking the time to leave a comment and express understanding.
And to everyone else who I was unable to respond to through email, thank you! I really am so lucky to have such great people come here.
I can’t even begin to imagine what it was like for your family before Rubys surgery. As a very tender mom, I know it would be crushing. Just seeing her pictures on Instagram before and Ayer surgery made me cry several times. You need time to heal. Your heart is probably unloading some of the heaviness that it couldn’t possibly process before.
I lost my little guy, and I understand your feelings. While he was in the PICU awaiting his second surgery, the baby in the room next to him died. So did one down the hall. And another, and another. My heart broke for those families, and guilt mixed with my gratefulness that MY baby was still alive. And now that he’s gone, I admit that I sometimes feel jealous that he wasn’t one of the lucky ones, but at the same time I am SO glad for every CHD baby that defies the odds and survives. If anything, having a child with CHD — whether they survive or not — opens our eyes to a whole new world and a greater appreciation for every moment we get with our precious babies. ♥ I hope Ruby continues to do well, and that you are able to worry about her a little less over time. I admire heart moms who spend decades watching for blue lips and cold hands. They are so strong!
Oh my goodness, Heather, I’m so sorry. I cannot imagine and my heart goes out to you. I am so sad when I hear these stories and sorry that you have to know such sorrow. I pray that you are blessed with peace. Thank you for sharing your story. Hugs!!
I’m so glad that Ruby is doing so well! I found your blog just before you were going ot have surgery. I was praying for your family and Ruby! My 5 months old son has CHD (Ebstein anomaly) and it’s still like roller-coaster road for us. Maybe you know this son : http://www.youtube.com/watch?v=9qxE_1_6TC8. It’s just like your questions and every CHD Mum feels that way. Hugs!
I don’t want to be a part of that club either. My youngest survived leukemia at one yr old and is now a healthy 6 yr old. My world tweaked askew and has never gone back. I would rather live care free where babies don’t get sick than count your blessings and live every day to the fullest…..blah blah blah. Sorry to not be all positive and full of advice. I know I have suffered ptsd and have not had counseling but antidepressants have atleast made the day sunny again and given my kids back their mom. I hope the best for you and obtaining true happiness with a light heart again.