We have a finite number of pictures of Ella, but they're spread out over three computers and a memory card or two. Some are on our old computer, and some are on the laptop I had at the hospital. Where we stored them depended upon where and when we took the pictures and where we were when we needed to make more room on the camera’s memory card. Thankfully, though, most of the pictures ended up on my husband’s work computer. After Ella died, we did our best to consolidate the photos onto one computer. Even knowing that, though, I have moments of panic when looking for a particular shot. I panic because I can’t find it. I panic because it’s not where I think it should be. I panic because I need to see it; I need to reassure myself that the picture is still there. God forbid I’ve lost it or it’s somehow been accidentally deleted because I can never get it back. Those pictures can never be replaced.
My husband - God love him and his patience with me - bought a thumb drive this week that has A LOT of memory. He bought it so that I could have everything Ella related from his computer here at home, no longer having to rely on his work computer for access to those pictures and videos. He transferred not only Ella items but also all the old pictures he had of our boys. It took a while because there was quite a bit to transfer, thank God. When all was said and done, I was able to sit down and take a long walk down memory lane. The older pictures of our boys cracked me up! They were as cute and goofy back then as they are now. The early pictures of Ella…those broke my heart and opened my eyes. She was so small when we first brought her home! The pictures we have out on the fridge are from when she was a little bit older, so I think I’d forgotten just how tiny she was. She was just a wee little thing swaddled up in her crib, my sweet little burrito of love. And then to see her so small in a hospital bed with lines and tubes coming out of her…wow.
Ella was six days old when she was first hospitalized, still a newborn really. We have a picture of her from the first (local) children’s hospital after she was admitted but before she was flown to a different children’s hospital where she would spend over half her life. She was still in her “I’d rather be in the womb than out here” mode – legs pulled up, hands balled into fists, face scrunched up, just so wee. Her pacifier seemed to take up half her face, it was so big!
Because
she was a heart baby, she was not only smaller than other babies but she also
grew slower. Her chances of making a big
splash on the baby growth charts weren’t helped by the fact that, for the first
part of her hospital stay, she wasn’t allowed to eat. Because of the variety of congenital heart
defects that Ella had and the problems each caused, the doctors had to make
sure enough blood was perfusing to the lower half of her body, including her
stomach. Inadequate blood flow to her
stomach would have caused serious problems, including lack of proper digestion
and possible tissue death. Even when
feeds were started, they were very slow and of very small amounts. So my wee girl stayed wee. She was feisty and awesome and strong, but
she was wee.
Looking through all of those early Ella pictures brought back so many memories and emotions. They reminded me of how helpless I felt while Ella was hospitalized – helpless in my complete dependence upon God and His infuriatingly incomprehensible plan, helpless in my complete reliance upon all the nurses and doctors to keep me informed of everything that was going on, helpless in my complete inability to do anything to heal my daughter.
To feel completely helpless to do anything for your child is a horrible feeling. I never felt more overwhelmed by the feeling of helplessness than I did one evening when my daughter needed to have her blood drawn. Drawing blood from a person isn’t necessarily a difficult task for the average nurse, but when the patient is a small, newborn heart baby with perfusion issues who’s not only a difficult stick but is also clamping down [her already small veins seemed to shrink (clamp down) because it was more important for her vital organs to get blood than for her arms and legs], then that average everyday blood draw becomes decidedly un-average. On this particular evening, several nurses had come into Ella’s room to try to help. They tried to take blood from several locations on Ella’s body – hand, foot, scalp. After quite a long time and numerous failed attempts, the fellow on duty came in to draw blood from the femoral artery. An arterial blood draw is never the first option, but in this case after well over half an hour, several unsuccessful tries, and the angry cries of a very vocal, pissed off baby, it was the best option.
And all I could do while this was going on was watch, pace, pray, and cry silently. I did my darndest to not just sob outright while this was going on, but it was very hard. I could do absolutely nothing to help my daughter. She was very angry and agitated. She was screaming and crying, and I could do nothing to make all the pain and bother stop. I rationally knew that the blood draw was for her own good and that it was medically necessary, but rational thought doesn’t mean jack when it comes to watching your baby experience pain. A simple blood draw, yet it still makes me cry to think of it more than a year later.
In all of the emotion of that evening, I distinctly remember a thought I had that seemed to come from out of the blue:
If this is how I felt watching my baby girl have blood drawn, if I could feel so helpless as a witness to her helplessness, so overwhelmed by the desire to stop the pain and just hold her to me, so primal in my passion to protect her from all harm, then how much more did Mary feel while watching her Son, her sweet, innocent Boy, beaten, scourged, abused, taunted, tortured, and crucified, His own blood flowing down His brow, from His hands and feet, pouring forth from His side?
It used to sort of piss me off when people would say that I could look to Mary as an example, that she, too, was a mother who had to watch her Child suffer immeasurably, that I could learn not only how to say yes to God in all things but also that I could follow her example of grace-filled suffering. I could trust God’s plan and say wholeheartedly, “May it be done unto me according to Thy word.” In my grief, I would just scoff at that. I would jump past the example of Mary to the make the point that this was different because her Son chose to suffer. Her Son knew that He would have to suffer and still chose to go through all of it anyway. My baby, born with a very sick heart, didn’t have a choice.
It took me months to calm down enough in my grief to remember Mary, His mother, who also must have felt helpless as a witness to her Son’s torture, so overwhelmed by the desire to stop the pain and just hold Him in her arms, so primal in her passion to protect Him from all who would harm Him. How totally her heart must have been pierced by a sword with each and every scourge on His back, with each thorn in the crown He was forced to wear, with each hammer of the nails in His hands and feet, with each strangled breath He took while hanging on that cross. The suffering I endured watching my sweet daughter experience pain was maybe one-one millionth of what Mary endured. How humbling to realize how much pain and suffering her willing and unconditional “yes” to God, said with total obedience and trust in His word, brought into her own life!
Throughout my own journey with my children, most especially with my Ella, I’ve come to a certain realization: when I said yes to the vocation of wife and mother and when I said yes to my children’s lives and their presence in mine, I opened myself up to the possibility of my own heart being pierced by a sword. That’s all well and good when the only pain your children experience is the occasional scraped knee or bloody nose or when the only things that hurt are their feelings or their bruised egos. What I hadn’t accounted for was the deep, soul-crushing piercing that happens when you spend day and night at the side of your critically ill baby, when you are powerless to help her, when even your mommy kisses aren’t enough to make the pain go away, and when you can do nothing more than hold her in your arms as she breathes her last breath, as her heart beats for the last time. Nothing prepares you for the pain of such a piercing. Nothing.
On January 1, the Catholic Church celebrated the Solemnity of Mary, the Mother of God, the woman whose unconditional yes to God changed the course of human and salvation history. I thought that it was such an appropriate way to start off the new year – remembering Mary, my mother; contemplating what it means to say yes to God’s call and to His will in my life, no matter how hard that may be; really thinking about how many times I’ve said “no, not now, maybe later, it’s too hard” instead of “yes!”; and understanding that God will not leave me alone or abandon me after I do say yes, that the strength to do His will does not come from me but from Him, and that I will be strong enough to do His will if I trust Him to lead me through it.
I’m not making any new year’s resolutions this time around. I guess I could work on being better organized or on eating healthier. There’s always room for that kind of improvement in my life, that’s for sure! Instead, though, I’m going to focus more on making Mary’s fiat my own. I’m going to work on saying yes to God more. I’m going to pray more honestly Jesus’ own words “not my will but Thy will be done.” And I’m going to remember that the deepest pain I’ve experienced in my life thus far, the pain of Ella’s death, a pain that pierced my heart so deeply, came hand in hand with the most overwhelming joy – that of being the mother of the most awesome baby on the planet.
St. Ella, pray for us!
Looking through all of those early Ella pictures brought back so many memories and emotions. They reminded me of how helpless I felt while Ella was hospitalized – helpless in my complete dependence upon God and His infuriatingly incomprehensible plan, helpless in my complete reliance upon all the nurses and doctors to keep me informed of everything that was going on, helpless in my complete inability to do anything to heal my daughter.
To feel completely helpless to do anything for your child is a horrible feeling. I never felt more overwhelmed by the feeling of helplessness than I did one evening when my daughter needed to have her blood drawn. Drawing blood from a person isn’t necessarily a difficult task for the average nurse, but when the patient is a small, newborn heart baby with perfusion issues who’s not only a difficult stick but is also clamping down [her already small veins seemed to shrink (clamp down) because it was more important for her vital organs to get blood than for her arms and legs], then that average everyday blood draw becomes decidedly un-average. On this particular evening, several nurses had come into Ella’s room to try to help. They tried to take blood from several locations on Ella’s body – hand, foot, scalp. After quite a long time and numerous failed attempts, the fellow on duty came in to draw blood from the femoral artery. An arterial blood draw is never the first option, but in this case after well over half an hour, several unsuccessful tries, and the angry cries of a very vocal, pissed off baby, it was the best option.
And all I could do while this was going on was watch, pace, pray, and cry silently. I did my darndest to not just sob outright while this was going on, but it was very hard. I could do absolutely nothing to help my daughter. She was very angry and agitated. She was screaming and crying, and I could do nothing to make all the pain and bother stop. I rationally knew that the blood draw was for her own good and that it was medically necessary, but rational thought doesn’t mean jack when it comes to watching your baby experience pain. A simple blood draw, yet it still makes me cry to think of it more than a year later.
In all of the emotion of that evening, I distinctly remember a thought I had that seemed to come from out of the blue:
If this is how I felt watching my baby girl have blood drawn, if I could feel so helpless as a witness to her helplessness, so overwhelmed by the desire to stop the pain and just hold her to me, so primal in my passion to protect her from all harm, then how much more did Mary feel while watching her Son, her sweet, innocent Boy, beaten, scourged, abused, taunted, tortured, and crucified, His own blood flowing down His brow, from His hands and feet, pouring forth from His side?
It used to sort of piss me off when people would say that I could look to Mary as an example, that she, too, was a mother who had to watch her Child suffer immeasurably, that I could learn not only how to say yes to God in all things but also that I could follow her example of grace-filled suffering. I could trust God’s plan and say wholeheartedly, “May it be done unto me according to Thy word.” In my grief, I would just scoff at that. I would jump past the example of Mary to the make the point that this was different because her Son chose to suffer. Her Son knew that He would have to suffer and still chose to go through all of it anyway. My baby, born with a very sick heart, didn’t have a choice.
It took me months to calm down enough in my grief to remember Mary, His mother, who also must have felt helpless as a witness to her Son’s torture, so overwhelmed by the desire to stop the pain and just hold Him in her arms, so primal in her passion to protect Him from all who would harm Him. How totally her heart must have been pierced by a sword with each and every scourge on His back, with each thorn in the crown He was forced to wear, with each hammer of the nails in His hands and feet, with each strangled breath He took while hanging on that cross. The suffering I endured watching my sweet daughter experience pain was maybe one-one millionth of what Mary endured. How humbling to realize how much pain and suffering her willing and unconditional “yes” to God, said with total obedience and trust in His word, brought into her own life!
Throughout my own journey with my children, most especially with my Ella, I’ve come to a certain realization: when I said yes to the vocation of wife and mother and when I said yes to my children’s lives and their presence in mine, I opened myself up to the possibility of my own heart being pierced by a sword. That’s all well and good when the only pain your children experience is the occasional scraped knee or bloody nose or when the only things that hurt are their feelings or their bruised egos. What I hadn’t accounted for was the deep, soul-crushing piercing that happens when you spend day and night at the side of your critically ill baby, when you are powerless to help her, when even your mommy kisses aren’t enough to make the pain go away, and when you can do nothing more than hold her in your arms as she breathes her last breath, as her heart beats for the last time. Nothing prepares you for the pain of such a piercing. Nothing.
On January 1, the Catholic Church celebrated the Solemnity of Mary, the Mother of God, the woman whose unconditional yes to God changed the course of human and salvation history. I thought that it was such an appropriate way to start off the new year – remembering Mary, my mother; contemplating what it means to say yes to God’s call and to His will in my life, no matter how hard that may be; really thinking about how many times I’ve said “no, not now, maybe later, it’s too hard” instead of “yes!”; and understanding that God will not leave me alone or abandon me after I do say yes, that the strength to do His will does not come from me but from Him, and that I will be strong enough to do His will if I trust Him to lead me through it.
I’m not making any new year’s resolutions this time around. I guess I could work on being better organized or on eating healthier. There’s always room for that kind of improvement in my life, that’s for sure! Instead, though, I’m going to focus more on making Mary’s fiat my own. I’m going to work on saying yes to God more. I’m going to pray more honestly Jesus’ own words “not my will but Thy will be done.” And I’m going to remember that the deepest pain I’ve experienced in my life thus far, the pain of Ella’s death, a pain that pierced my heart so deeply, came hand in hand with the most overwhelming joy – that of being the mother of the most awesome baby on the planet.
St. Ella, pray for us!
