I was going to write words about all of the feelings, but this passage says it perfectly:
A first child is your own best foot forward, and how you do cheer those little feet as they strike out. You examine every turn of flesh for precocity, and crow it to the world. But the last one: the baby who trails her scent like a flag of surrender through your life when there will be no more coming after–oh, that’ s love by a different name. She’s the babe you hold in your arms for an hour after she’s gone to sleep. If you put her down in the crib, she might wake up changed and fly away. So instead you rock by the window, drinking the light from her skin, breathing her exhaled dreams. Your heart bays to the double crescent moons of closed lashes on her cheeks. She’s the one you can’t put down.
-Barbara Kingsolver, The Poisonwood Bible
I don’t think it’s ever taken me nearly two weeks to post about a new baby. Well, I know it hasn’t. The other two were well-documented from birth.
Just to make it official:
Elijah Harris Tousey was born on January 20, 2014 at 12:33am.
He weighed in at 8 lbs, 1 oz, and measured 20″ long.
This guy… well, I have just been doing with Eli what I didn’t appreciate to do with Sam, and what I couldn’t do with Charlotte: resting. Lots of resting and feeding and cuddling and just letting my body recover while I enjoy my new baby.
It has been wonderful.
So while I do apologize to those of you who love baby pics, I am not sorry for soaking up every bit of this sweet time that I can.
I’ve also been trying to cuddle with my big kids, too. It is great how self-sufficient they are, but they still need some mama time.
One thing I was really looking forward to was getting that photo that I didn’t get with Sam and Charlotte… the picture of mom in the hospital bed with new baby and big siblings. And I finally got it! (You can click on the picture to make it bigger.)
I would not have planned to have another baby just to be able to do all the things we couldn’t do with Charlotte, but it has been sweet to have this chance. I think of all the things, all the little moments, that I took for granted (or even grumbled over!) with baby Sam… the late-night feedings, learning to nurse, picking him up whenever I wanted. I am so grateful to God that he gave us this sweet baby boy, and another opportunity to watch a little tiny baby grow up and be part of our family.
I have to give thanks to my mama, too, for coming up to stay with us for a bit. She was a great help with the big kids, with meals and with laundry. And even though we have done this three times now, I was a crying mess when she left! I also have to thank my sweet husband. He worked really hard to take care of things at his job beforehand so that he could take advantage of his company’s paternity leave. It’s not easy for him to not be at work for extended periods of time, so I am most thankful for his willingness to arrange things so that he can be home with us. I could not (and wouldn’t want to) do this life without him.
It’s time to feed the babe again, but I will leave you with this preciousness that is all three of my babies as babies.
I keep having this nagging thought in light of my last post, and I want to quickly talk about that this morning.
There is a trap in comparing our suffering to others that many of us have fallen into from time to time, and that is in thinking my issue is not worth talking about, because it’s not as “bad” as what someone else is dealing with. Comparison can paralyze you and keep you quiet when you need to speak up, when you need prayers and help carrying a burden.
I have these sweet friends here, and between the three of us we could tell some tales. We have all been through struggles and suffering of varying degrees, and I think it is safe to say that parenthood has brought in a whole slew of issues we never saw coming.
Over the years we have dealt with things no parenting book can prepare you for… some things we have each made public via blogs, and some things we kept closer to home. But we always, always, ask for prayer from each other (and from family members and other close friends) as well as help when circumstances warrant such.
I can’t imagine feeling too silly to ask them for prayer because what I am dealing with isn’t as bad, or the same thing, as what they are going through or have gone through. We pray for each other because we love each other.
I think I have shared before that sometimes people are hesitant to talk about their child’s health issues because it doesn’t seem as serious as what we walked through with Charlotte. A good example of this is when a friend’s child is having tubes put in their ears. Are ear tubes the same as open-heart surgery? No. Is a child going under anesthesia for any reason a little scary? YES. I want to know if you are carrying a burden for your child so I can help you carry it, regardless of the severity of the burden.
I have friends who have been (and still are) on journeys with their sons, navigating the worlds of Autism Spectrum Disorder and sensory processing disorders. At the same time, we have been dealing with some comparatively minor behavioral issues with Sam, but things for which I still need some prayer and encouragement. I love knowing that I can go to my friends who will understand without judgment, and will offer encouragement and wisdom because they have been there.
I do think it is fine and even sometimes appropriate to acknowledge that what you are going through “isn’t the same thing.” But don’t let that fact keep you from asking for prayer and help with your own struggle. God’s Word commands us to carry one another’s burdens. The Bible doesn’t say, “…but only if it’s the same as or worse than your own burden.” Nope. Just carry.
Rejoice with those who rejoice, weep with those who weep.
If you are carrying a burden alone today, please reach out and ask for some extra hands. Don’t let comparison keep you from sharing your suffering.
I would love to pray for you! You can comment here or email me at jtousey(at)gmail(dot)com.
I began writing this on my phone, sitting in a recliner at the Cancer Center of Frederick. I’ve been coming here twice a week to get infusions of iron, as this pregnancy has rendered me extremely anemic. The doctor explained that I was too deep in an iron deficiency hole for pills to work. I wondered how I was still upright.
On the surface, it would be easy to complain about the inconveniences of coming here twice a week for about two hours at a time… the childcare arrangements, the “wasted” time, the fact that I am so anemic.
I have to say, though, that sitting in a room with men and women who are getting chemo treatments keeps me from complaining or feeling sorry for myself. And my first reaction was to be thankful for my circumstances because “it could be worse, I could be here for chemotherapy.” What a shortsighted view I have.
Of course it’s easy to take the “it could be worse” attitude, but what if the “it could be worse” is where you are living right now? I’ve been thinking on that a lot this week… I have a friend I have known since middle school, and she is in the process of dying. And she is doing it with grace, faith, dignity and even with her sense of humor in tact. For Jeannie, her husband and her parents, they are in a place where it really couldn’t be worse, at least by our human standards. But Jeannie is holding fast to the one thing that makes even the worse bearable; she knows that when she takes her last breath here, she will be face-to-face with the One who breathed life into her in the first place.
That’s the place I want to live in. Not the “it could be worse” comparison as a path to joy and gratitude, but in the place of being joyful and grateful because He Is. I want to be grateful because I have this very moment, regardless of the circumstances. Grateful because he sees me, he knows me and he loves me, even if it feels like no one else in the world does.
And I’m not saying this to say that we should never have a moment of complaint, or of being angry about a bad day or unexpected circumstances that cause suffering. We are all going to have bad days, bad moments, and I think it’s okay to not be okay with it. But our path from that moment back to a grateful heart doesn’t need to be by way of “it could be worse.” It can be by way of “…blessed assurance, Jesus is mine!”
Hebrews tells us that Jesus endured the cross, the very epitome of physical, emotional and spiritual suffering. And he did it “for the joy set before him.” Jesus had no “it could be worse.” And yet he had joy, and that joy allowed him to endure the greatest suffering known to man. His joy didn’t come from the suffering; no, his endurance came from the joy, a joy based not on his present, but on the promise of what was to come. Jesus knew that the day of his suffering and death would have an end, and that beyond that day was a greater day, a day where he would be reunited with his Father, a day that would know no end.
We can have that same joy*. Jesus freely offers each one of us the peace that comes with knowing him and following him; the peace in knowing we have eternity with Christ, regardless of what suffering we endure on earth. Some of you reading this right now may be experiencing an extended period of suffering; if you are, I pray that God would give you a fresh vision of what is to come so that you can endure with joy. Not a forced, faked joy, but a true, deep-in-the-marrow-of-your-bones joy that comes from knowing Christ is yours, and you. are. his. No more need to measure your bad days against someone else’s. No more need to compare your suffering with the suffering of others. Just a sweet assurance that all of this earthly suffering is temporary.
Higher than the mountains that I face
Stronger than the power of the grave
Constant through the trial and the change
One thing… Remains
*If all of this sounds completely strange and impossible to you, I would love to talk with you about how you can know such a joy, even in the face of great suffering. You can comment here or email me at jtousey(at)gmail(dot)com.
A few nights ago, as The Sound of Music was being watched live around the country, my Facebook newsfeed was extremely busy. There were the positive and negative comments about Carrie Underwood and cast. And then there were other comments about a commercial… a St. Jude’s commercial to be more specific. No doubt, these are always moving commercials with a combination of celebrities and children who are in various stages of chemotherapy. But this particular commercial lit up a closed group of heart mamas that night for a more specific reason; Shaun White, the famous olympic snow-boarder, was among the celebrities.
This isn’t his first time supporting St. Jude, and I don’t in any way begrudge him his charity there. But what is extremely hard for many of us is that Shaun White is man with a congenital heart defect. He survived open-heart surgery as a child and he is clearly thriving in spite of living with a serious heart condition. Shaun White has been asked on many occasions to speak on behalf of research for CHDs. He has refused every time. He doesn’t want to be defined by his CHD (totally understandable! I don’t want Charlotte to be defined by hers, either). And yet it is mind-boggling to me that he would lend his celebrity to help some sick children, but not others to whom he has a direct tie.
And before I start getting nasty comments, please know that I am not saying this because I think it should be either/or. I know families who have children with cancer, and who have lost children to cancer. A sick child is a sick child, and while there may be varying degrees of suffering, it all sucks. Plain and simple. I guess what many of us in the CHD community don’t understand is why it can’t be both/and. Congenital heart defects kill more children each year than all the childhood cancers combined, and yet CHDs get a paltry amount of funding for research. Pediatric cancer, on the other hand, gets tons of funding (which is great) and as a result of that funding and places like St. Jude’s, the mortality rates of pediatric cancers has declined by more than 50% in the last decade (according to the National Cancer Institute). That is great news, and that is what happens when there is funding and research.
Part of this is our fault… we don’t have a cohesive organization* like Susan G. Komen (in terms of name recognition) or a hospital dedicated to the research and treatment of congenital heart defects. There is no place where heart parents can take their children for free care and treatment. (Charlotte’s first hospital stay cost more than our first two houses combined, and she was only there for three weeks. We know of families who spend months at a time in the confines of the CICU. We will be forever thankful for excellent health insurance.) There are organizations around for children with heart defects, but they are mostly small and disconnected and many are just geography-specific.
Why am I sharing all of this? Just to complain? No… I think it’s my way of raising awareness. Or maybe I just had too much time to think about it this morning after reading a letter another mom wrote to Shaun White.
I’m sharing this letter because it gives a little insight into the life of a heart parent, especially this time of year when we are being asked to give to St. Jude’s at nearly every turn. I don’t agree with everything she says (especially about St. Jude’s in particular), but I do completely understand her frustration.
This line in particular nailed it for me: I know how horrible cancer is and have known my whole life. I didn’t know a thing about CHD until I was offered to terminate my baby before he was born or put him in a hospice the morning after his birth. I had no idea the fight I faced, and neither does most of America.
I don’t know that I publicly shared that particular part about our journey with Charlotte, that we were given the option to “terminate” her at 18 weeks gestation. I was informed that I only had two weeks to decide. I don’t know the data on how many parents choose this option, but I do know that they are higher than we would probably care to think about.
I think that’s another reason why CHds aren’t as well-known… childhood cancer strikes children who have been living typically normal, healthy lives. They are children and grandchildren, classmates and friends (not always, I know; babies can get cancer, too). CHDs show up in newborns, and many, like Charlotte, get through the more “dramatic” stages of treatment before they start preschool. If you were just meeting Charlotte for the first time today, you would have no idea that she has ever been sick a day in her life. Her little constellation of scars is hidden by clothes. You couldn’t possibly know that she is being kept alive by a tiny piece of Gore-Tex and plumbing technology to rival the ancient Roman aqueducts.
Again, this isn’t about elevating a childhood birth defect over a childhood disease. They are both horrible (as are the myriad other childhood birth defects and illnesses I haven’t even mentioned). This is me using my little space on the internet to share my thoughts on a topic close to our family. And maybe I’m hoping the next time you see Shaun White on a St. Jude’s commercial or on a pack of gum, you’ll think about kids with CHDs, too.
*Some of you may be thinking, “what about the American Heart Association?” What, indeed. The AHA has different chapters across the country, and while they have some discretion over how funds are spent, in general they spend less than one penny per dollar raised on research, treatment and support for CHDs. The vast majority of their funds go to dealing with adult-onset heart disease. So if you give money and time to the AHA, continue to do so; they do a lot of great work. But please don’t do so because you think that your donation is helping children like Charlotte. If you are interested in helping, the best place is The Children’s Heart Foundation.
We moved into our new house at the end of September, so we’re coming up on two months in the house.
In the past, we have had anywhere from a week to a month to move into a new place before we had to be out of the old place, so we always had ample time to clean and paint before our boxes were loaded in.
This time, we had about 18 hours, so I am adjusting to the land of Things Are Not The Way I Want Them. With school and life and pregnancy, I haven’t been able to tear through my to-do list. Things are taking time. Ugly paint is being tolerated.
But today I think we can call one room done. We still have things to hang on the wall, but everything is put away, the floor is clean and I can sit and type this to you from the surface of my very clean desk.
The office/classroom is DONE, and it is purty.
So without further chit-chat, here are some (kinda dark) pictures for your enjoyment. (The wall paint is Martha Stewart Bakery Box White, if you’re interested.)
Here is a video of C singing her song about the Crusades: