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| right before they put her on the helicopter |
A year ago in June Abby gave us one of the biggest scares of her life. The entire story is here. Long story short, the common cold could have cost Abby her life. Her hands and feet turned dark blue. She was sent by ambulance to the local hospital, then sent to the children’s hospital by helicopter. Watching a helicopter fly away with her on it was one of the hardest things I’ve ever done. I remember holding with one hand onto a tree, and with the other onto my sister, Melanie. I remember looking at the sky and screaming at God in my head to not take her.
I’m not usually so fragile. If you read that entire post, you’ll see in the moments before I learned that Abby wasn’t doing so well, I had a very sweet, oddly peaceful feeling that I was being prepared. But what I didn’t say is that I felt like I was being prepared to lose my daughter.
I’ve never really shared that last part publicly. Because even in saying it, I want to say so badly, “It’s not going to happen! She’s fine! Everything is fine and always will be!”
But I’m not strong enough.
I made Abby’s follow-up appointment this week and then cried for a half-hour before I reached out to Melissa to pull me out of the mess I was in. It’s just a stupid appointment! Why am I such a wimp?!
Because I’m not strong enough.
And then today I was dinking around on facebook and saw that several of my friends had “liked” a post. This post: http://www.cincinnatibirthphotography.com/2012/04/a-beautiful-beginning-nora-roses-birthstory/ Some said to not watch it unless you have a box of tissues handy. That usually is the cue for me to move on. And I usually do. But something compelled me to watch.
You should watch, too. I was a mess at the end. I’m still a mess. It was a beautiful, sweet reminder that God works miracles. So I went to her blog to read more about Nora, this sweet baby born with Trisomy 18, (a third chromosome on the 18th pair, Abby has Trisomy 21) which is usually not compatible with life. Her blog is called, “I’ll Carry You“. I read and cried and read and cried. Then I clicked on the song that she posted the night before Nora was born. A song that I’ve posted here before, too.
And there it was. I am not strong enough. But I don’t need to be. Because my Savior, Jesus Christ, will help me to bear the burdens I am faced with. Matthew 11 says, “Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.”
I’m so grateful for this family that I don’t know. A family so willing to share their trials and their faith with the world. A family who showed me that I can handle this thing, something that seems so small in comparison, because they are handling that. I can’t imagine what they are going through right now. Please keep them and sweet baby Nora in your prayers.
Abby’s appointment is next Tuesday. I’ll let you know what we find out. We are hoping that the hole will have shrunk to the point where she won’t need surgery at all, though the doctors were very clear that at this point, that was very unlikely. We are praying for peace with whatever needs to be. We are praying that her little body can handle all that life will throw at her. And we are grateful to know that through this all, we are not alone.
Lexi Mag 
Praying for your family, and trusting that God will carry you through this time. Praying for peace for you all, wisdom for the doctors, and grace for each step along the way.
Oh, wow. Well, you don't sound fragile to me at all. This is just heart rending. Of course, you're struggling; this is scary stuff. I will be praying for you and your family, praying that God takes care of all of you. I have to tell you how much I admire your strength and faith. There are days my faith is stretched so thin, over minutiae compared to what you are dealing with. You amaze me.
(((Hugs)))Lauren's surgery was at 6 weeks old and in all honesty, it sucked. I was so scared. Scratch that, scared isn't strong enough. Words can't describe it. But she's a month post-op and doing more than awesome. You'd never know she had surgery.I felt God's peace while we were in the hospital (five weeks total, admitted at three weeks old) and I feel like a thousand pound wright has been lifted since her surgery. It feels amazing to be on the other side of it. You'll get there and I'll be praying for you until you do.
We do believe in miracles they happen everyday!Your post of the picture of Deron and Jaron you also posted a quote that said,"Be Brave with your life so that others can be Brave with theirs."You are strong enough Lexi!!!
Addison has had two heart procedures. The second one was able to be done through the cath option. Of course, she was on 24 hours of oxygen for nine months and we did the surgeries to get rid of it so my braveness was just a cover. You're going to do fine. (ok but I totally know what you mean about feeling prepared to lose a child. I've felt that way before too.)
Praying for you and for little Abby. Heart surgery for my Cora (and even more so waiting for it) was one of the hardest things I've been through. Hoping that Abby has the great results that we've had.
I have/do/will experience this too. Hugs and tears, my friend.www.wynkoop10@gmail.com
Last year when I heard that song for the first time I was heading into one of the hardest years of my life. Nothing helped me through that time like the words of that song. I felt that way so often, that I wasn't strong enough to do it on my own. Peace would come when I would settle back and really believe these words…"I don't have to be, strong enough, on my own." So many times I went to bed with tears falling down my face and that song playing on my ipod. So many times when trials seemed too much, those words would pour through my mind and comfort me once again. We can get through anything Lexi. This I'm sure of. He never leaves us alone. Ever.There is another song that I love. The chorus says:And the arms that hold the universeAre holding you tonightYou can rest insideIt's gonna be alrightAnd the voice that calmed the raging seaIs calling you His childSo be still and know He's in controlHe will never let you goJust like that night when the helicopter flew off and we jumped in the car and headed to Salt Lake, we knew the Lord was in control. He let Dad get that sweet little message to us and we felt the comfort of our Heavenly Father from that point on. I know He will be there for you in the weeks to come. He loves you. And I love you. All will be ok.
I am praying for you all. Jesus is Who we need in every situation. Bless you.
Wow Lexi, I've read that same blog recently and so many others like it. You guys are in my thoughts and prayers.
I am praying for your daughter and you and your family now.
That seriously gave me chills, thinking about how awful that had to have been to see your baby airlifted away, without you. It was hard enough to hand Samantha over to the surgeons for open heart surgery when she was less than 4 months old. Thinking of you, hoping for good results…
Prayers sent up for you, Lexi, and your beautiful daughter and family. Amazing post, amazing song, and extremely moving story about baby Nora (your words, the song, the story, all brought me to tears this morning). Will be thinking about you tomorrow!
I'm sorry for you. I know how you feel. We go in for our baby girls open heart surgery next Tuesday. I don't feel strong enough either, but I don't have any other choice do I? I've been praying for peace that she will be ok, and this is the right time to do it. I hope you get good news, and I will be able to be done with the catheter if you have to do it. Someone should get a miracle.
Prayers, and just saying one more time…. OHS = easier than T&A (plus it's fun to type T&A, right??) tonsils & adenoid removal to all you pervs out there…
I can sympathize with how you feel because we have been on the up and down roller coaster of Kamdyn's heart defect for two years now. I know what it's like to dread those appointments and lose sleep the night before. I just wanted to encourage you not to think of the surgery as something that might take her away but something that will save her. I'm guessing that what happened last year would not of if her heart was healthy. I'm sure you will see a huge difference in her health and energy too. Keep us posted and I will pray.
Wow – how scary seeing her fly of must have been. I hope all goes well with the appointment.Sarah had her OHS at 3 months old. It was terrifying and she almost died but now almost 8 years later, you'd never know it. I look back at that time (which was crazy crazy even without the OHS)and it's like it happened to a whole other family. I didn't think I was strong. I still don't think I'm strong. You just do what you have to do.
Oh Patty, you know that's not true. I think my faith is stretched much further over the day to day stuff. The stuff where it isn't so incredibly important to pray like crazy all of the time. It's so much easier to let those days eat away at you, bit by bit.Speaking of eating away, let's get lunch.
I absolutely could not even imagine. Abby is bigger, and for some reason that makes me feel like this whole thing is going to be safer. 6 weeks?! My good friend's daughter had a heart transplant a while ago. That entire day I paced and cried and paced and cried. When I spoke to her later, she said how at peace she was. I could not believe it.It was because the Spirit was there with her. She felt the prayers on her behalf. I didn't get that same measure because people weren't praying for me- her obscure friend on the other side of the country.Because people are jerks!Just kidding. Anyways, your comment helped me to remember that I can't have that measure of the Spirit in worry. In preparation. But it will be there when the time comes, I'm sure.
That's what Nora's family is doing for sure. I think about them a lot. They are brave. I am learning.
Deanna, from now on, I will call you "D". That's a big deal. Anyways, I hate saying this, but I really appreciate you saying that you felt prepared to lose a child. Even when I wrote those words and stared at them for a long time, I didn't want to publish them because I feel like I'm CRAZY! Please tell me you felt like you were crazy, too. And then, while you're at it, send me some pictures of Addison. I'm in love with her.
Melissa, right back at you. I thought about you the entire time I wrote this post. What I'm going through is piddly nothing compared to what you are going through. You are brave. I'm trying to be like you.
Wow. We're praying for you guys. Can I get an invite to your blog? I'd love to be able to check in and see how she's doing. mostlytruestuff@gmail.com.
That's what we are a little bit afraid of. She's FULL of energy right now. MORE? MORE! AKKK. I will love it though. They said that her colds won't last as long or be as severe after it's fixed. That would be fantastic!Have you guys had the surgery done yet? Does she need it?
Thank you, Jill. You're absolutely right. I was thinking about that this morning. It's not like I have any other choice, right? And ALL of the kids that I have met who have had OHS are doing great. You would never know. Thank you for your comment.
Leighton our baby girl has her own blog. Highonchromosomes.blogspot.com Oh and thanks for kristin's input down there.. I'm holding onto that comment.
I'm 8 months out from going through Sadie's heart surgery. I saw a pediatric cardiologist twice during the pregnancy (we were also preparing for Trisomy 18 or 21, because of several markers), and began meeting with a cardiologist soon after she was born, with a plan to hold surgery off until she was 4. At 10 months old, I knew something was wrong, so we met with the cardiologist again, and after an ECG, we discovered the right side of her heart was dilating. She had surgery at 14 months, and now has a 25mm Helex device in her heart. It was a scary day, took 3 tries with two different size devices, we almost had to go the open-heart route instead, but we made it. You just do it. I still have the Scripture my pastor and friend sent to my phone that morning. Ephesians 3:20-21 and Psalm 91:1-2
I don't know how I missed this post. Your family will most definitely be in my thoughts and prayers, especially Abby and you. I really love the message from that song and it reminded me of a quote from Sister Chieko Okasaki's book "Lighten Up." I'm going to c&p it here. Sometimes the knowledge that I am not experiencing my trials alone is the one thing that gets me through the hard times. "We know that Jesus experienced the totality of mortal existence in Gethsemane. Its our faith that he experienced everything- absolutely everything. Sometimes we dont think through the implications of that belief. We talk in great generalities about the sins of all humankind, about the suffering of the entire human family. But we dont experience pain in generalities. We experience it individually. That means he knows what it felt like when your mother died of cancer- how it was for your mother, how it still is for you. He knows what it felt like to lose the student body election. He knows that moment when the brakes locked and the car started to skid. He experienced the slave ship sailing from Ghana toward Virginia. He experienced the gas chambers at Dachau. He experienced Napalm in Vietnam. He knows about drug addiction and alcoholism. "Let me go further. There is nothing you have experienced that he does not also know and recognize. On a profound level, he understands the hunger to hold your baby that sustains you through pregnancy. He understands both the physical pain of giving birth and the immense joy. He knows about PMS and cramps and menopause. He understands about rape and infertility and abortion. His last recorded words to his disciples were, 'And, lo, I am with you always, even unto the end of the world.' (Matthew 28:20) He understands your mother-pain when your five-year-old leaves for kindergarten, when a bully picks on your fifth-grader, when your daughter calls to say that the new baby has Down syndrome. He knows your mother-rage when a trusted babysitter sexually abuses your two-year-old, when someone gives your thirteen-year-old drugs, when someone seduces your seventeen-year-old. He knows the pain you live with when you come home to a quiet, empty apartment, where the only children are visitors, when you hear that your former husband and his new wife were sealed in the temple last week, when your fiftieth wedding anniversary rolls around and your husband has been dead for two years. He knows all that. Hes been there. Hes been lower than all that. "He's not waiting for us to be perfect. Perfect people don't need a Savior. He came to save his people in their imperfections. He is the Lord of the living, and the living make mistakes. Hes not embarrassed by us, angry at us, or shocked. He wants us in our brokenness, in our unhappiness, in our guilt and our grief."