The most important thing my husband and I needed to know was that our baby did not have Hailey's syndrome. We were so incredibly thankful and overjoyed when we found out this pregnancy is in the clear. It's interesting to me...when the genetic counselor first talked to us about the syndrome and told us the odds for future pregnancies were risky, I expected her to say they were 50/50 or worse. When she told us it was a 25% chance with each pregnancy, I thought, well, that isn't so bad! I mean, of course you hope the bad odds are as low as possible and I sure would have appreciated them being even lower...but I thought, my tender, aching heart can brave a 75% success rate of a healthy baby.
We hoped for the best. We tried to take nothing for granted. I prayed the Lord wouldn't ask me to give up two children in a row. Sadly, I've heard of others who, even with 1 in 4 odds like us, still have borne multiple effected pregnancies in a row. My heart aches for these folks. Finding out this baby was healthy was such a gift, and I prayed my thanks to the Lord, and to Hailey. And then we settled in to wait the few additional days it would take us to hear back about the chromosomal analysis, which would reveal something like Down Syndrome, as well as the gender of the baby. I reminded my husbanded we still needed to pray that this child be protected from any of the more common anomalies that could still occur, and my husband knew I was also praying that baby #3 was a girl.
It isn't that I don't love having a son or wouldn't want another one. The most important thing to me is the baby's health. But selfishly, and for the sake of my own grieving process, I thought my life would be a lot harder if I only had a daughter in Heaven, and not here on Earth. I still have all of the beautiful baby girl clothes I had hoped to dress Hailey in, and the dreams of fostering a close mother and daughter relationship like the one I have with my Mom (and now, my mother-in-law as well). I also knew one of the hardest things for my husband in losing Hailey was how he had looked forward to someday being a mess on her wedding day, as he walked her down the aisle to give her away. I wanted that for him, too. So every night, I lay in bed and fell asleep clasping the necklace around my neck with Hailey's name on it, praying she had picked out the perfect sibling.
The day before we moved to Georgia, I went in to the hospital for my final ultrasound with the high-risk doctors. Everything on the baby looked great, and it just so happened they had the results of the chromosomal analysis. All normal...AND...WE ARE HAVING ANOTHER GIRL!!!! I was so happy and thankful, I jumped out of the chair and hugged the genetic counselor, tears in my eyes. I couldn't get out of there fast enough to get home to tell my husband. Perhaps I should have had her write it down so I could find out the gender together with him, but I wanted to do something special to give him a big reveal, no matter whether it was a boy or a girl.
In the midst of our house being a mess, and the movers walking in and out to load all of our belongings on to the moving van, I gave my husband a giant gift bag. I made up some backstory/excuse about how it was a present for the Army program he was set to graduate from the following day before we hit the road to Georgia. But once he opened it, out floated a handful of pink balloons! He was as overjoyed as I was, and we both held each other, laughing and feeling completely blessed.
And then...we both felt kind of sad. And maybe a little bit guilty. We were so overjoyed to be having a healthy baby girl, but then felt like we needed Hailey to know we didn't love her any less because she hadn't been a healthy baby girl. Both of these emotions still war within me at times. I feel like this healthy baby girl is such a gift from Hailey (and God!), and I want her to know I don't take her for granted. I know I couldn't have done more for Hailey, but I still find myself wishing I could have held her a little bit longer, showed her even more love. I will spend the rest of my life trying to be worthy of her and the gifts she helped bestow upon us.
I will admit, a few days later, when we arrived in Georgia and the moving van pulled up in front of our house to unload everything, I had a bit of a hard time. I'd done fine in Kansas as I'd watched all of Hailey's things being packed up, but watching them get carried into our new home made me cry. I don't know why, and am grateful the movers were incredibly kind about me being a little bit of a mess.
Now, as I walk through the upstairs and unpack boxes and put things away, I wonder what I will be able to face again, and what will be too hard. I LOVE the carseat we picked out for Hailey. It was brightly colorful and she only ever rode in it a handful of times. But one of those times was to the children's hospital emergency room, from which she never got to leave. That carseat sat empty in the backseat of my minivan for weeks, with the long-forgotten swaddle blanket stained with the funny color puke that sent us scrambling.
Those swaddle blankets...all the clean ones, anyway...I'm not sure I can use them again. There are certain items I more closely associate with Hailey. I think I can find my way to use the carseat again, but I think those brightly colored, beautiful pink swaddle blankets might be a bridge too far. She never got to wear too many of her clothes, so those are mostly okay...and my husband thinks Hailey might appreciate having her little sister wear some of her hand-me-downs. That thought made me smile a little.
As for the burp cloths we made by hand...I don't think I could part with those. And even though Hailey never spent a single night in her nursery, we made her bedding by hand as well. I'm still not sure I can reuse it. Not because I associate it so much with Hailey while she was actually alive, but because I link it in my mind to what now feels like the naive joy with which I labored over every detail of my first daughter's nursery. To be reminded of that hope and excitement...without knowing the awful sorrow that lay ahead of us...is often just too hard for me to think about.
So I guess all of this is a new stage of grief...having to go through Hailey's belongings...relive the past and the emotions attached to them, and try to figure out how to keep moving forward. Today, I found joy in the fact that since we are no longer living in on-post housing but rather a house we bought, I get to paint the nursery! My husband isn't convinced on the color yet, but he is humoring me. It's navy blue and he thinks it is too dark, but I told him it'd make the white furniture and the brightly-colored decor POP in a very cheerful way.
In closing, I don't want anything in this post to reflect that we aren't completely grateful to be having a healthy baby. What I am trying to show is that grief is complicated, and that even when you receive the most joyous news you ever could pray for, the grief still finds a way in. I've found that happiness and sadness are not mutually exclusive, but can live alongside each other in your heart. And that it is okay.
Once again, with love and gratitude.
Wednesday, June 7, 2017
Saturday, June 3, 2017
It Is Never Easy
To pick up where I left off last night, my husband and I decided to try the old fashioned way to get pregnant again and to pursue genetic testing if and when we managed to conceive. I could only manage to think about things one step at a time --- otherwise, there was so much worry, it would all become overwhelming. They say stress can make it hard to conceive and I thought heck --- there are few things more stressful than burying a loved one! I was nervous about our chances and the countdown clock to deployment was ticking.
We were not successful that first month, but I told myself that was okay because the medicine might still be washing out of my system. The second month, I had a dream that felt very clearly to me like it was from Hailey, like I was being guided to it like Scrooge was guided around by the ghosts of Christmas past, present and future. In it, I held a positive pregnancy test in my hands. When I woke up, I told my husband about the dream and that I believed we would conceive that month, and we did! Weeks later, I cried tears of joy and thanks to our angel in Heaven as I did indeed hold a positive pregnancy test in my hands.
So at that point, we'd crossed two hurdles. I was surviving my unfiltered grief, and we'd managed to conceive our third child. But then we faced our next challenge: genetic testing. It was never an option in my mind to forego the testing, and this is where I must admit to all of you that I am a hypocrite. I do believe that God makes everyone as they are meant to be and this foundation is how I manage to accept so many different walks of life.
I believe that God made Hailey just as she was meant to be, and I don't regret a single moment that I spent with her. I would have given my life to spare hers. I can't tell you how many minutes and hours and days I would sit in the hospital and hold her, and try to push all of my love and my very own life force into her as if I stood a chance of healing her.
But when it came time to try to have another baby, I needed to know if the baby had Hailey's syndrome. And if the baby did, maybe if I were a better or stronger or more faithful person, I would be able to stand up and say, "this is God's plan", and continue with the pregnancy. I want to be honest with all of you and admit that I didn't think I could, for a number of reasons.
First, I've needed to have c-sections to deliver each of my children. While of course there are women out there who have had many c-sections and are fine, most doctors seem to think you should try to keep it to two or three. I've already had two.
Second, I thought about what losing Hailey put our entire family through. It is both a blessing and a curse that our son is too young to remember his baby sister, but if we lose another child, he would be old enough to remember. And he'd remember all the time he lost with me, both because of the time I spent in the hospital, and the time I spent swallowed up with grief. Add to that, my husband will be half-way across the world for the second half of this pregnancy and the birth. I know the Army would send him home if our baby was dying, but that is a lot of worry to put on my husband for the time that he is far away.
Last, and most importantly, is my real reason for feeling like I couldn't give birth to another child with Hailey's syndrome. I could not helplessly hold another child, formed for nine months within my own body, as he or she suffered and lay dying. Hailey's syndrome plagued multiple systems of her body and it was severe. I look back through all of my photos of my time with her in the hospital, and it breaks my heart how tired and sad she looks in some of them. There is one in particular where she looks like an old person who has seen the worst that people can do to each other and is just tired in her soul. There are others where she has fallen asleep with her head thrown back and mouth thrown open, desperately trying to breathe and to hang on.
I was worried that having to walk that path with another child would kill ME, heart and soul. I felt I couldn't knowingly bring another child into this world to suffer that kind of existence. Now, I know we showed Hailey positive things, like the power and beauty of love. But everything we put her through medically was because we thought she could get better. I didn't think I could do all of that to another child now that we knew there would be no chance.
I know that by sharing all of this, some of you may judge me or disagree with me. I hope no one says anything hateful, because it would cut me to the core. But I am telling you all of this anyway because abortion is a very sensitive topic in our society. And I just want people to know there are stories out there like ours, and to know how we feel. That it isn't a black and white issue. It is so, so easy for folks to judge, but until you've walked a mile in someone else's shoes, it is hard to know how YOU would truly react. I'm not trying to change your mind or your beliefs, whatever they may be. I just ask you to be empathetic --- to not take it for granted if you've been blessed enough to never walk the path we are on now.
At any rate, we proceeded with testing and I opted for chorionic villus sampling. It did come with a slightly higher risk of causing miscarriage, which terrified me. The odds might not sound too bad to you if you heard them, but the odds that Hailey would have the syndrome she did were like 1 in a gazillion so I was taking nothing for granted. I chose CVS testing despite the higher risk because it could be done earlier on --- between 11-13 weeks. An amnio can't be done until 15 weeks and for either procedure, results take 2 weeks or so to come back. I could barely stomach the thought of terminating the pregnancy if the baby did have the syndrome, and if that was to be our path, I wanted to face that as early as possible. Sadly, I've had friends who have medically needed to have abortions after 18 weeks gestation and I cannot tell you the heartache they felt, losing a child they could already feel moving inside of them. That was another layer of suffering I didn't think I could endure after losing Hailey.
As the day of the procedure approached, I grew more and more apprehensive. I scheduled it so my husband could be there, and my Mom flew out to help with my son since I'd have to be on bed rest for a few days following. My husband and I talked about whether or not we'd be able to terminate the pregnancy if the baby was sick, and each of us felt more and more uncertain. And that's just it --- I think if you are a well-adjusted person, choosing to end a pregnancy is NEVER an easy decision. It comes with its own anguish.
I thought about our journey, and the blog posts I write here, and wondered if I'd ever be honest with people about what we faced and our feelings on termination, knowing what a polarizing issue it is. Part of me hoped the baby would be healthy so I'd never have to. But another part of me promised that no matter what, I'd be honest with the world so that people have more context when they pick their side of the issue. And perhaps maybe, knowing our story, they will at least speak more gently to others in the future.
With all that being said, the big day finally arrived. I had to show up to the hospital with a full bladder, because I guess that helps the ultrasound tech who helps guide the doctor doing the procedure. I won't go into too much detail, but I will explain a few things because I want you all to know that Hailey was in that room with me. CVS can be conducted either transvaginally, or with a needle through the stomach. It all depends on where the fetus has implanted in the uterus. It is my understanding that the procedure is much harder to tolerate when having to go through the stomach.
Well, when we got in there and the doctor saw where this baby had implanted, she said she'd have to go through my stomach and even then, wasn't sure she'd be able to access enough of the placenta to get enough material for testing. She asked me if we wanted to wait a week and try coming back, but I told her we couldn't because the Army was moving across the country in a matter of days. We were just going to have to pray and hope for the best.
The doctor then told my husband and I they were still waiting on some of my blood work to come back before they could start the procedure, so she said I could empty my bladder (which was about to burst!) and go have lunch, as long as I drank more water. So we wandered down to the hospital cafeteria --- the whole time I was lost in a daze. I tried not to get all worked up. After everything we had gone through with Hailey, I wondered why we were once again being faced with a decision with no good options. I couldn't wait to have the procedure, but doing the procedure that day might not even be successful. And it could all cause a miscarriage anyway. And going through the stomach was the most painful and I'm SQUEAMISH! I took some deep breaths and decided I just needed to trust in God, and by extension, Hailey.
When we returned to the exam room after lunch, I lay on the table as they began to get the big needle and everything else ready. I clasped the necklace around my neck with Hailey's name on it, and I prayed. I prayed for some of my daughter's strength. She faced so much pain for us, and I didn't want to disappoint her by being a wimp about the procedure. I prayed as the ultrasound tech confirmed one last time the position of the placenta. And lo and behold, my little angel had her hand on me in that exam room! Everyone was shocked to see that after emptying my bladder, it had tilted back in the opposite direction of a normal person's, allowing the baby's placenta to move into the perfect position for the procedure to be conducted transvaginally. But more than that, with the new location, the doctor was completely confident she could gather enough material for testing to be successful!
The procedure was unpleasant but not overly painful, and after experiencing that miraculous turnaround, I felt confident Hailey was still watching out for us and it may sound foolhardy, but I then had a sense of peace that the test results would come back clear. I had faith at that point, but worried people would think me naive or lacking in caution, so I was careful not to sound overly optimistic when I spoke of it to anyone. How silly is that? What shame is there in having faith, or being optimistic? Truly, there is none.
About a week after the procedure, the genetic counselor surprised me when she called me while I was in the middle of a vet appointment with my dog. I knew a chromosomal analysis would reveal the gender of the baby as well as something like Down Syndrome, and that test was likely to come back first. I had been warned the test for Hailey's syndrome would take a bit longer, but the lab surprised us. It was the same lab who'd handled Hailey's genetic tests while she was alive --- they knew us and our story and because of this, they had worked to rush our results for this new baby. The counselor brimmed with joy as she gave me "the happiest news ever": our baby did NOT have the syndrome!!!
I was so happy I cried, and eagerly wrapped up the vet appointment so I could rush home and give my husband the good news in person. At that point, all we were waiting on was the gender and Downs test, which I will pick up with my next blog post, if any of y'all are still with me. I know this is a lot to take in, and perhaps I'm oversharing, but this blog is my form of therapy and I thank you for your patience and support.
With love and a grateful heart.
We were not successful that first month, but I told myself that was okay because the medicine might still be washing out of my system. The second month, I had a dream that felt very clearly to me like it was from Hailey, like I was being guided to it like Scrooge was guided around by the ghosts of Christmas past, present and future. In it, I held a positive pregnancy test in my hands. When I woke up, I told my husband about the dream and that I believed we would conceive that month, and we did! Weeks later, I cried tears of joy and thanks to our angel in Heaven as I did indeed hold a positive pregnancy test in my hands.
So at that point, we'd crossed two hurdles. I was surviving my unfiltered grief, and we'd managed to conceive our third child. But then we faced our next challenge: genetic testing. It was never an option in my mind to forego the testing, and this is where I must admit to all of you that I am a hypocrite. I do believe that God makes everyone as they are meant to be and this foundation is how I manage to accept so many different walks of life.
I believe that God made Hailey just as she was meant to be, and I don't regret a single moment that I spent with her. I would have given my life to spare hers. I can't tell you how many minutes and hours and days I would sit in the hospital and hold her, and try to push all of my love and my very own life force into her as if I stood a chance of healing her.
But when it came time to try to have another baby, I needed to know if the baby had Hailey's syndrome. And if the baby did, maybe if I were a better or stronger or more faithful person, I would be able to stand up and say, "this is God's plan", and continue with the pregnancy. I want to be honest with all of you and admit that I didn't think I could, for a number of reasons.
First, I've needed to have c-sections to deliver each of my children. While of course there are women out there who have had many c-sections and are fine, most doctors seem to think you should try to keep it to two or three. I've already had two.
Second, I thought about what losing Hailey put our entire family through. It is both a blessing and a curse that our son is too young to remember his baby sister, but if we lose another child, he would be old enough to remember. And he'd remember all the time he lost with me, both because of the time I spent in the hospital, and the time I spent swallowed up with grief. Add to that, my husband will be half-way across the world for the second half of this pregnancy and the birth. I know the Army would send him home if our baby was dying, but that is a lot of worry to put on my husband for the time that he is far away.
Last, and most importantly, is my real reason for feeling like I couldn't give birth to another child with Hailey's syndrome. I could not helplessly hold another child, formed for nine months within my own body, as he or she suffered and lay dying. Hailey's syndrome plagued multiple systems of her body and it was severe. I look back through all of my photos of my time with her in the hospital, and it breaks my heart how tired and sad she looks in some of them. There is one in particular where she looks like an old person who has seen the worst that people can do to each other and is just tired in her soul. There are others where she has fallen asleep with her head thrown back and mouth thrown open, desperately trying to breathe and to hang on.
I was worried that having to walk that path with another child would kill ME, heart and soul. I felt I couldn't knowingly bring another child into this world to suffer that kind of existence. Now, I know we showed Hailey positive things, like the power and beauty of love. But everything we put her through medically was because we thought she could get better. I didn't think I could do all of that to another child now that we knew there would be no chance.
I know that by sharing all of this, some of you may judge me or disagree with me. I hope no one says anything hateful, because it would cut me to the core. But I am telling you all of this anyway because abortion is a very sensitive topic in our society. And I just want people to know there are stories out there like ours, and to know how we feel. That it isn't a black and white issue. It is so, so easy for folks to judge, but until you've walked a mile in someone else's shoes, it is hard to know how YOU would truly react. I'm not trying to change your mind or your beliefs, whatever they may be. I just ask you to be empathetic --- to not take it for granted if you've been blessed enough to never walk the path we are on now.
At any rate, we proceeded with testing and I opted for chorionic villus sampling. It did come with a slightly higher risk of causing miscarriage, which terrified me. The odds might not sound too bad to you if you heard them, but the odds that Hailey would have the syndrome she did were like 1 in a gazillion so I was taking nothing for granted. I chose CVS testing despite the higher risk because it could be done earlier on --- between 11-13 weeks. An amnio can't be done until 15 weeks and for either procedure, results take 2 weeks or so to come back. I could barely stomach the thought of terminating the pregnancy if the baby did have the syndrome, and if that was to be our path, I wanted to face that as early as possible. Sadly, I've had friends who have medically needed to have abortions after 18 weeks gestation and I cannot tell you the heartache they felt, losing a child they could already feel moving inside of them. That was another layer of suffering I didn't think I could endure after losing Hailey.
As the day of the procedure approached, I grew more and more apprehensive. I scheduled it so my husband could be there, and my Mom flew out to help with my son since I'd have to be on bed rest for a few days following. My husband and I talked about whether or not we'd be able to terminate the pregnancy if the baby was sick, and each of us felt more and more uncertain. And that's just it --- I think if you are a well-adjusted person, choosing to end a pregnancy is NEVER an easy decision. It comes with its own anguish.
I thought about our journey, and the blog posts I write here, and wondered if I'd ever be honest with people about what we faced and our feelings on termination, knowing what a polarizing issue it is. Part of me hoped the baby would be healthy so I'd never have to. But another part of me promised that no matter what, I'd be honest with the world so that people have more context when they pick their side of the issue. And perhaps maybe, knowing our story, they will at least speak more gently to others in the future.
With all that being said, the big day finally arrived. I had to show up to the hospital with a full bladder, because I guess that helps the ultrasound tech who helps guide the doctor doing the procedure. I won't go into too much detail, but I will explain a few things because I want you all to know that Hailey was in that room with me. CVS can be conducted either transvaginally, or with a needle through the stomach. It all depends on where the fetus has implanted in the uterus. It is my understanding that the procedure is much harder to tolerate when having to go through the stomach.
Well, when we got in there and the doctor saw where this baby had implanted, she said she'd have to go through my stomach and even then, wasn't sure she'd be able to access enough of the placenta to get enough material for testing. She asked me if we wanted to wait a week and try coming back, but I told her we couldn't because the Army was moving across the country in a matter of days. We were just going to have to pray and hope for the best.
The doctor then told my husband and I they were still waiting on some of my blood work to come back before they could start the procedure, so she said I could empty my bladder (which was about to burst!) and go have lunch, as long as I drank more water. So we wandered down to the hospital cafeteria --- the whole time I was lost in a daze. I tried not to get all worked up. After everything we had gone through with Hailey, I wondered why we were once again being faced with a decision with no good options. I couldn't wait to have the procedure, but doing the procedure that day might not even be successful. And it could all cause a miscarriage anyway. And going through the stomach was the most painful and I'm SQUEAMISH! I took some deep breaths and decided I just needed to trust in God, and by extension, Hailey.
When we returned to the exam room after lunch, I lay on the table as they began to get the big needle and everything else ready. I clasped the necklace around my neck with Hailey's name on it, and I prayed. I prayed for some of my daughter's strength. She faced so much pain for us, and I didn't want to disappoint her by being a wimp about the procedure. I prayed as the ultrasound tech confirmed one last time the position of the placenta. And lo and behold, my little angel had her hand on me in that exam room! Everyone was shocked to see that after emptying my bladder, it had tilted back in the opposite direction of a normal person's, allowing the baby's placenta to move into the perfect position for the procedure to be conducted transvaginally. But more than that, with the new location, the doctor was completely confident she could gather enough material for testing to be successful!
The procedure was unpleasant but not overly painful, and after experiencing that miraculous turnaround, I felt confident Hailey was still watching out for us and it may sound foolhardy, but I then had a sense of peace that the test results would come back clear. I had faith at that point, but worried people would think me naive or lacking in caution, so I was careful not to sound overly optimistic when I spoke of it to anyone. How silly is that? What shame is there in having faith, or being optimistic? Truly, there is none.
About a week after the procedure, the genetic counselor surprised me when she called me while I was in the middle of a vet appointment with my dog. I knew a chromosomal analysis would reveal the gender of the baby as well as something like Down Syndrome, and that test was likely to come back first. I had been warned the test for Hailey's syndrome would take a bit longer, but the lab surprised us. It was the same lab who'd handled Hailey's genetic tests while she was alive --- they knew us and our story and because of this, they had worked to rush our results for this new baby. The counselor brimmed with joy as she gave me "the happiest news ever": our baby did NOT have the syndrome!!!
I was so happy I cried, and eagerly wrapped up the vet appointment so I could rush home and give my husband the good news in person. At that point, all we were waiting on was the gender and Downs test, which I will pick up with my next blog post, if any of y'all are still with me. I know this is a lot to take in, and perhaps I'm oversharing, but this blog is my form of therapy and I thank you for your patience and support.
With love and a grateful heart.
Friday, June 2, 2017
The Decision to Try Again
I have been long overdue to write this blog post, but a lot has been going on in our lives these days and so here I finally sit on a Friday night, sharing this next chapter in our story. As most of you know by now, our family is once again expecting a new baby and we are very excited!!! But let me start at the beginning.
Our sweet Hailey was born on September 5, 2016 and went home to be with the Lord on December 30 of that same year. I first took her to the hospital emergency room in October when she threw up a funny color, and for our first weeks and then month+ in the hospital, we were hopeful that she could get better. But by mid-to-late November, it seemed to be growing clearer that whatever Hailey had was very serious and although we didn't yet have a specific diagnosis, everything on the table at that point was terminal in one way or another.
So, one night, my husband and I sat in our room at the Ronald McDonald House and faced both the prospect of losing our daughter, and what this might mean longer term for our family. There are questions that pop into your head, and you feel ugly for even thinking them, and I think sometimes grieving parents lash out at each other if one should dare to give voice to them. It feels wrong to discuss having more kids when your second child is losing the battle for her life right before you. But when my husband raised the question, I didn't bite his head off. The thought had been in my head, too. Perhaps he was just the one brave enough to face it first.
My initial reaction was that our son would just become an only child --- my little partner in crime as we powered through moving around with the military and my husband's deployments. I specifically remember being adamant that if Hailey passed, we were selling the minivan we'd gotten immediately. I wanted that symbol or our burgeoning family gone, STAT.
My husband replied more calmly, and told me he thought trying again showed a certain amount of resiliency. I can tell you, that did NOT resonate with me! My exact thought is that people could go F*@K themselves with their resiliency --- I didn't care what anyone else thought. (Sorry for my language, but that was my very emotional reaction!).
My husband's second reason hit me far deeper. Having already lost his father, and facing the prospect of burying our daughter, my husband admitted that it made him nervous to have only our son. That if anything ever then happened to HIM, he wasn't sure he could survive that. To reach old age, and to have outlived all our children. To not have grandchildren to someday bounce on our knees and spoil. I realized that despite the agony of losing Hailey, I did still share my husband's vision of having multiple children. (But truthfully, even if I hadn't, I think I still would have tried again just for him. I regret every day that I never got the chance to meet his Dad, who is lauded by everyone who knew him as being the most wonderful man).
In the final days of Hailey's life, a genetic counselor came to meet with us. We discussed Hailey's suspected diagnosis (the formal confirmation of which we didn't receive back from the genetics lab until the day after we buried her). We discussed what it meant for our families (as it was the result of a bad gene inherited from each side) and what it meant for us, should we want to have more children.
We were presented with two options. (1) We could try to get pregnant the old fashioned way, and then conduct genetic testing (a) at 11-13 weeks via chorionic villus sampling (CVS) or (b) at 15 weeks via an amniocentesis. Either testing method would reveal whether or not the new baby had the terminal syndrome within 2-3 weeks of the procedure, at which point we could decide whether or not to continue with the pregnancy. I should mention, each procedure runs the risk of causing miscarriage.
(2) We could go the route of IVF, which I knew about on a very superficial level, but not much more than that. The genetic counselor warned us about what a stressful process undergoing IVF was, but told me that every family she'd known who had done it had not regretted it on the back end, when they finally became pregnant with what they knew was a healthy child (due to weeding out affected embryos before implantation). No genetic testing needed on the fetus, and no fear of causing miscarriage by doing so. But as I researched IVF, I was surprised at both the cost and the success rate for each round. A quick glance showed that one round of IVF cost roughly $12-$15,000 and my chances of conceiving were roughly 33%. And, knowing how expensive Hailey's medical bills were becoming, I was rather shocked health insurance wouldn't cover IVF as a means of potentially avoiding much more expensive payouts if we were to give birth to another child with her syndrome.
Complicating all of this even further, we knew my husband was set to deploy within about six months of us burying Hailey. We always wanted our children to be close in age - our son and Hailey had been 26 months apart. Plus, I'm getting older. So we didn't feel like we had long to wait before we tried again.
We buried Hailey in the first week of January. I'd already stopped taking the anti-anxiety medicine I'd needed to help get me through my final days with her. By January 20, I stopped taking the anti-depressants my doctor had also prescribed me a month before Hailey passed. I was scared to go off the medicine so soon after losing Hailey. I was scared about how much they might have been helping to prop me up...how consuming and raw my grief might be without them. But I knew the medicine needed to be out of my system before my husband and I tried to conceive again. We'd decided to try the old-fashioned route, since we hadn't had trouble getting pregnant before. That being said, we were blessed with our son immediately, but Hailey took five months of trying. I wasn't sure we even could conceive a third child before my husband deployed, and wanted to give us as much time as possible to try. So I pushed myself off the meds and I prayed to God, and to Hailey, a whole heck of a lot...
Through all of this and as I will mention in various parts of our journey, I SO feel Hailey's hand in all of this. I believe she is watching out for us, and I just strive to be worthy of her. To honor her, never forget her and love her always, with every fiber of my being. She was a blessing, and continues to bless us still, as I will share in my next post.
Our sweet Hailey was born on September 5, 2016 and went home to be with the Lord on December 30 of that same year. I first took her to the hospital emergency room in October when she threw up a funny color, and for our first weeks and then month+ in the hospital, we were hopeful that she could get better. But by mid-to-late November, it seemed to be growing clearer that whatever Hailey had was very serious and although we didn't yet have a specific diagnosis, everything on the table at that point was terminal in one way or another.
So, one night, my husband and I sat in our room at the Ronald McDonald House and faced both the prospect of losing our daughter, and what this might mean longer term for our family. There are questions that pop into your head, and you feel ugly for even thinking them, and I think sometimes grieving parents lash out at each other if one should dare to give voice to them. It feels wrong to discuss having more kids when your second child is losing the battle for her life right before you. But when my husband raised the question, I didn't bite his head off. The thought had been in my head, too. Perhaps he was just the one brave enough to face it first.
My initial reaction was that our son would just become an only child --- my little partner in crime as we powered through moving around with the military and my husband's deployments. I specifically remember being adamant that if Hailey passed, we were selling the minivan we'd gotten immediately. I wanted that symbol or our burgeoning family gone, STAT.
My husband replied more calmly, and told me he thought trying again showed a certain amount of resiliency. I can tell you, that did NOT resonate with me! My exact thought is that people could go F*@K themselves with their resiliency --- I didn't care what anyone else thought. (Sorry for my language, but that was my very emotional reaction!).
My husband's second reason hit me far deeper. Having already lost his father, and facing the prospect of burying our daughter, my husband admitted that it made him nervous to have only our son. That if anything ever then happened to HIM, he wasn't sure he could survive that. To reach old age, and to have outlived all our children. To not have grandchildren to someday bounce on our knees and spoil. I realized that despite the agony of losing Hailey, I did still share my husband's vision of having multiple children. (But truthfully, even if I hadn't, I think I still would have tried again just for him. I regret every day that I never got the chance to meet his Dad, who is lauded by everyone who knew him as being the most wonderful man).
In the final days of Hailey's life, a genetic counselor came to meet with us. We discussed Hailey's suspected diagnosis (the formal confirmation of which we didn't receive back from the genetics lab until the day after we buried her). We discussed what it meant for our families (as it was the result of a bad gene inherited from each side) and what it meant for us, should we want to have more children.
We were presented with two options. (1) We could try to get pregnant the old fashioned way, and then conduct genetic testing (a) at 11-13 weeks via chorionic villus sampling (CVS) or (b) at 15 weeks via an amniocentesis. Either testing method would reveal whether or not the new baby had the terminal syndrome within 2-3 weeks of the procedure, at which point we could decide whether or not to continue with the pregnancy. I should mention, each procedure runs the risk of causing miscarriage.
(2) We could go the route of IVF, which I knew about on a very superficial level, but not much more than that. The genetic counselor warned us about what a stressful process undergoing IVF was, but told me that every family she'd known who had done it had not regretted it on the back end, when they finally became pregnant with what they knew was a healthy child (due to weeding out affected embryos before implantation). No genetic testing needed on the fetus, and no fear of causing miscarriage by doing so. But as I researched IVF, I was surprised at both the cost and the success rate for each round. A quick glance showed that one round of IVF cost roughly $12-$15,000 and my chances of conceiving were roughly 33%. And, knowing how expensive Hailey's medical bills were becoming, I was rather shocked health insurance wouldn't cover IVF as a means of potentially avoiding much more expensive payouts if we were to give birth to another child with her syndrome.
Complicating all of this even further, we knew my husband was set to deploy within about six months of us burying Hailey. We always wanted our children to be close in age - our son and Hailey had been 26 months apart. Plus, I'm getting older. So we didn't feel like we had long to wait before we tried again.
We buried Hailey in the first week of January. I'd already stopped taking the anti-anxiety medicine I'd needed to help get me through my final days with her. By January 20, I stopped taking the anti-depressants my doctor had also prescribed me a month before Hailey passed. I was scared to go off the medicine so soon after losing Hailey. I was scared about how much they might have been helping to prop me up...how consuming and raw my grief might be without them. But I knew the medicine needed to be out of my system before my husband and I tried to conceive again. We'd decided to try the old-fashioned route, since we hadn't had trouble getting pregnant before. That being said, we were blessed with our son immediately, but Hailey took five months of trying. I wasn't sure we even could conceive a third child before my husband deployed, and wanted to give us as much time as possible to try. So I pushed myself off the meds and I prayed to God, and to Hailey, a whole heck of a lot...
Through all of this and as I will mention in various parts of our journey, I SO feel Hailey's hand in all of this. I believe she is watching out for us, and I just strive to be worthy of her. To honor her, never forget her and love her always, with every fiber of my being. She was a blessing, and continues to bless us still, as I will share in my next post.
Tuesday, May 9, 2017
Mixed Feelings this Mother's Day
I remember the first Mother's Day I celebrated as a mother...our first child --- our son --- was to be born in July, so I was fully pregnant and I would feel him kick but he had not yet joined us. Still, we celebrated. My husband and I were happy and excited and had no concerns about our pregnancy. We bore no concept of the trials many newborns can face.
Years later, during the many days and nights I spent in the NICU with Hailey, I marveled at how many of the nurses were themselves pregnant. I wondered at their strength. Every day, they see the worst of what can happen to our babies, and still they find the courage to begin and expand their own families. My husband and I had been relatively unsuspecting. But these women, they are FULLY informed. God bless them. I wish I could give them not our sad story with Hailey to put worry in their hearts, but all of our hope and joy and the excitement and love a new baby brings.
And as for this Mother's Day --- my first as a mother with a child in Heaven --- I just don't want to celebrate it. I wish it would pass without notice. You see, there are things you can know, logically, to be true. In my mind, I know I did everything for Hailey that I could. I know I left nothing on the table. I didn't leave her side for weeks on end in the hospital. I fought for her. I set all else aside for her. Truly, if I have any regrets, I know it is my guilt nitpicking and that I'm being overly hard on myself.
But in my heart, it is a different story. In my heart, no matter what my mind knows, I feel as though I failed my daughter. I know it was an unfortunate mix of a bad gene from both my husband and I that caused Hailey's terminal genetic syndrome, but somehow I feel the full weight of the blame. It was MY body that grew her for nine months. It was MY body that set the scene for the faulty genes to meet.
So yes, I KNOW I am a good mother to my son. I KNOW I was the best mother I could be to Hailey. But it is still a bridge too far for me to celebrate Mother's Day this year. I think I will likely be fine next year. But this year is too soon. Too harsh. Too much a reminder of my failings.
Thankfully, I have a wonderful friend who understands this journey I'm on and sent me a special book that was so perfectly timed in its arrival this week. It is called, "You are the Mother of all Mothers," and it tells me exactly what I need to hear. That I didn't fail Hailey. That I'm not a bad person who did anything to deserve this. I stare at the pages with the most simple of sentences to absolve me of my harshest self-criticisms, and try to own it. I'm working on it.
Tonight, I'd like to close with a quote I read on another friend's blog. It cracks my heart open every time.
Years later, during the many days and nights I spent in the NICU with Hailey, I marveled at how many of the nurses were themselves pregnant. I wondered at their strength. Every day, they see the worst of what can happen to our babies, and still they find the courage to begin and expand their own families. My husband and I had been relatively unsuspecting. But these women, they are FULLY informed. God bless them. I wish I could give them not our sad story with Hailey to put worry in their hearts, but all of our hope and joy and the excitement and love a new baby brings.
And as for this Mother's Day --- my first as a mother with a child in Heaven --- I just don't want to celebrate it. I wish it would pass without notice. You see, there are things you can know, logically, to be true. In my mind, I know I did everything for Hailey that I could. I know I left nothing on the table. I didn't leave her side for weeks on end in the hospital. I fought for her. I set all else aside for her. Truly, if I have any regrets, I know it is my guilt nitpicking and that I'm being overly hard on myself.
But in my heart, it is a different story. In my heart, no matter what my mind knows, I feel as though I failed my daughter. I know it was an unfortunate mix of a bad gene from both my husband and I that caused Hailey's terminal genetic syndrome, but somehow I feel the full weight of the blame. It was MY body that grew her for nine months. It was MY body that set the scene for the faulty genes to meet.
So yes, I KNOW I am a good mother to my son. I KNOW I was the best mother I could be to Hailey. But it is still a bridge too far for me to celebrate Mother's Day this year. I think I will likely be fine next year. But this year is too soon. Too harsh. Too much a reminder of my failings.
Thankfully, I have a wonderful friend who understands this journey I'm on and sent me a special book that was so perfectly timed in its arrival this week. It is called, "You are the Mother of all Mothers," and it tells me exactly what I need to hear. That I didn't fail Hailey. That I'm not a bad person who did anything to deserve this. I stare at the pages with the most simple of sentences to absolve me of my harshest self-criticisms, and try to own it. I'm working on it.
Tonight, I'd like to close with a quote I read on another friend's blog. It cracks my heart open every time.
"Lord, hold my child close to You,
And if You will, I plea,
That as You hold her close to You,
She remember when I held her
close to me."
-from Out of the Mouths of Babes 3/3/08
Tuesday, May 2, 2017
The Untethered Life of a Military Family
As most of you know, we are a military family. With this life comes both struggles and adventures, and we feel lucky to live in the United States, where the country respects its service members so highly and those of us within the community care for each other so well.
While it was hard to live far away from our families when Hailey took ill and passed away, our friends and neighbors took care of us in a way that allowed our family more freedom to worry with us, visit with Hailey, and mourn with us on their own terms when they came to visit. Our friends and neighbors viewed with clarity what we needed most, be it dinners, having our house professionally cleaned, or formalized childcare for our toddler so we could all spend more time at the hospital as Hailey's health deteriorated. We will be forever grateful.
When it eventually became time to let Hailey go, the military lifestyle presented me with one of my greatest heartaches: there was no way for me to keep our daughter with us, short of cremating her, which wasn't something I wanted to do. Because we move around every few years, no matter where I buried her, I was all but guaranteed not to be able to visit with Hailey. So we made the best decision we could, and chose to bury her in between my grandfather and aunt up in Massachusetts. We knew my husband would soon be deploying and that I'd likely go home to visit with family, and it would be my best opportunity to spend time by Hailey's side once again.
It hurt to come back to Kansas, where we currently live, and have no place to sit with Hailey. Trying to look on the bright side, I thought maybe it would force me to keep moving forward because unlike other parents who have lost a child, I couldn't go to my daughter's graveside every day, every week, or even every month. But, in a way, I've just felt...untethered.
When your child dies so young, you worry that they didn't have their chance to leave a mark on this world. Many members of our own families never even got to meet Hailey before she passed. They didn't get to see the light in her eyes or feel how gently she would snuggle into you. They didn't get to see how hard she fought back from death's door multiple times. And looking back now and seeing it all in hindsight, I marvel at the pain and discomfort she suffered through with such grace. Just to be with us for as long as she could.
Without being by her graveside, and with life moving forward here, sometimes I desperately look through all of the pictures I have of our daughter to remind myself she was really here. That we really lost a child. Our sweet, sweet baby girl. In reality, I want her with me always and look through the photos almost every night before I go to bed.
And then some days, when I FaceTime my Mom in Massachusetts, I find that she is at Hailey's graveside herself. It warms my heart to know that she and other members of my family tend to my daughter's resting place when I cannot. One day, my Mom even sent me this photo of the angel statue nestled above Hailey. It had just snowed in Boston, but you will notice how just the two leaves beneath the angel happen to be green when everything else around had turned to brown. I took that as a blessing from my sweet baby.
Little did I know that our military community here at Fort Leavenworth would still lift us up in not only our moment of illness and loss, but also in mourning and healing. I cried when my neighbor told me she had gotten the approval to plant a memorial garden for Hailey here on post, in the field across from our house. I cried when she told me the post landscaping company is donating a sitting bench and will maintain the garden for all the years to come. I cried at the local group of work-out Moms who are donating all the balloons for a memorial release at the dedication ceremony this Sunday. I cannot tell everyone how much this means to me.
My desperate need for people to KNOW my daughter led me to beg the medical staff who cared for her to attend her baptism and going home ceremony. It is why we invited our family, friends, and neighbors...really anyone who would come and bear witness to her existence, to be with us in that moment. It is why I write this blog. (It is why so many people who lose someone they love start a charity of some sort: they find healing in giving purpose to their suffering and loss.)
Thanks to our community here at Fort Leavenworth, my daughter is physically leaving her mark on this world, and not just with her tombstone. She will leave behind a beautiful place for people to rest and enjoy the tulips as they bloom each spring and signify rebirth. They will read her name on a brass plate and maybe they will spend a few moments contemplating her.
It has been four months since Hailey passed and these folks here at Fort Leavenworth are still loving us through it, and understanding what my aching Mama's heart needs even better than I do myself. This military life is hard, and I miss sitting with my daughter, but God has blessed us with the people who surround us here.
(I will be sure to post photos of the big dedication day once I have them! A bunch of folks from the hospital are even coming up for it, and I am so thankful for how much they have loved us, too.)
With love and a grateful heart.
While it was hard to live far away from our families when Hailey took ill and passed away, our friends and neighbors took care of us in a way that allowed our family more freedom to worry with us, visit with Hailey, and mourn with us on their own terms when they came to visit. Our friends and neighbors viewed with clarity what we needed most, be it dinners, having our house professionally cleaned, or formalized childcare for our toddler so we could all spend more time at the hospital as Hailey's health deteriorated. We will be forever grateful.
When it eventually became time to let Hailey go, the military lifestyle presented me with one of my greatest heartaches: there was no way for me to keep our daughter with us, short of cremating her, which wasn't something I wanted to do. Because we move around every few years, no matter where I buried her, I was all but guaranteed not to be able to visit with Hailey. So we made the best decision we could, and chose to bury her in between my grandfather and aunt up in Massachusetts. We knew my husband would soon be deploying and that I'd likely go home to visit with family, and it would be my best opportunity to spend time by Hailey's side once again.
It hurt to come back to Kansas, where we currently live, and have no place to sit with Hailey. Trying to look on the bright side, I thought maybe it would force me to keep moving forward because unlike other parents who have lost a child, I couldn't go to my daughter's graveside every day, every week, or even every month. But, in a way, I've just felt...untethered.
When your child dies so young, you worry that they didn't have their chance to leave a mark on this world. Many members of our own families never even got to meet Hailey before she passed. They didn't get to see the light in her eyes or feel how gently she would snuggle into you. They didn't get to see how hard she fought back from death's door multiple times. And looking back now and seeing it all in hindsight, I marvel at the pain and discomfort she suffered through with such grace. Just to be with us for as long as she could.
Without being by her graveside, and with life moving forward here, sometimes I desperately look through all of the pictures I have of our daughter to remind myself she was really here. That we really lost a child. Our sweet, sweet baby girl. In reality, I want her with me always and look through the photos almost every night before I go to bed.
And then some days, when I FaceTime my Mom in Massachusetts, I find that she is at Hailey's graveside herself. It warms my heart to know that she and other members of my family tend to my daughter's resting place when I cannot. One day, my Mom even sent me this photo of the angel statue nestled above Hailey. It had just snowed in Boston, but you will notice how just the two leaves beneath the angel happen to be green when everything else around had turned to brown. I took that as a blessing from my sweet baby.Little did I know that our military community here at Fort Leavenworth would still lift us up in not only our moment of illness and loss, but also in mourning and healing. I cried when my neighbor told me she had gotten the approval to plant a memorial garden for Hailey here on post, in the field across from our house. I cried when she told me the post landscaping company is donating a sitting bench and will maintain the garden for all the years to come. I cried at the local group of work-out Moms who are donating all the balloons for a memorial release at the dedication ceremony this Sunday. I cannot tell everyone how much this means to me.
My desperate need for people to KNOW my daughter led me to beg the medical staff who cared for her to attend her baptism and going home ceremony. It is why we invited our family, friends, and neighbors...really anyone who would come and bear witness to her existence, to be with us in that moment. It is why I write this blog. (It is why so many people who lose someone they love start a charity of some sort: they find healing in giving purpose to their suffering and loss.)
Thanks to our community here at Fort Leavenworth, my daughter is physically leaving her mark on this world, and not just with her tombstone. She will leave behind a beautiful place for people to rest and enjoy the tulips as they bloom each spring and signify rebirth. They will read her name on a brass plate and maybe they will spend a few moments contemplating her.
It has been four months since Hailey passed and these folks here at Fort Leavenworth are still loving us through it, and understanding what my aching Mama's heart needs even better than I do myself. This military life is hard, and I miss sitting with my daughter, but God has blessed us with the people who surround us here.
(I will be sure to post photos of the big dedication day once I have them! A bunch of folks from the hospital are even coming up for it, and I am so thankful for how much they have loved us, too.)
With love and a grateful heart.
Tuesday, April 25, 2017
We're All Living Dangerously
The saying goes that hindsight is 20/20. I even studied this effect in my undergrad psychology classes. With the wisdom gained from experiencing an event, we look back and wonder what we should have seen beforehand. I say "should have seen" with the notion of what could have been done to prevent it from happening because interestingly enough, we seem to conduct this post-mortem for bad events but not really for good ones. No one wins the lottery and then second-guesses the actions that led them to becoming a newly-minted millionaire.
There was no way we could have known that we would lose our daughter, and yet there are moments when I look back to things I remember saying, or how ridiculously excited I was to have a girl, and it is hard not to beat myself up.
I remember the day we went for the ultrasound to find out the gender of our second child. I was almost too scared to hope for a girl. Seeing how much my son favors his father, I so wanted my own mini partner-in-crime. I thought surely God would be too busy to grant me such a wish, but He did! I was so happy, I literally cried. And now, months later, bereft of my daughter and in my ugly moments, I think back to this moment and wonder why we were teased so cruelly.
Knowing I was carrying a girl perhaps made a trying pregnancy somewhat more bearable. It was hard to keep up with my very active son as my belly grew bigger and bigger and the summer heat and humidity grew relentless. I became quite swollen and was often very uncomfortable. Under these circumstances, I remember one evening when I was standing in my neighbor's driveway while our kids played. I'd heard a neighbor up the street had suddenly lost their five month old to SIDS, and my heart broke for her. Hailey was moving in my belly at the time, and running my hand over her to soothe her, I remember telling my neighbor I couldn't imagine how to survive losing a baby after growing it within my body for nine months. Especially when the pregnancy had been as trying as mine was with Hailey. In my small moments, I wonder if the powers at be looked down at me and shook their heads as if to say, "If only she knew what she has coming."
There are moments like this and a million more. The joy I felt at picking out little outfits for our daughter. The time we spent decorating the nursery. I wonder if I was naive. Why did I dare to hope that we could be that happy? That my life could finally be as perfect as I'd ever pictured it could be?
I was adrift in this self-loathing when I spoke to my mother recently. She asked me a question that knocked me back into a healthier perspective. "Imagine if we had foresight and not just hindsight? Imagine if we could see it all coming? Would people still dare to live their lives?"
If I had known that we would lose our daughter due to a freakishly rare genetic condition that my husband and I are both carriers for, would I have dared to marry my husband? Would we have dared to have children? I would like to think the answer to both of those questions would still be "YES", but there is no way to know for sure.
The thing is, we are all living and loving dangerously. None of us know what will happen tomorrow. None of it is guaranteed. I can't dismiss the hope I had for my pregnancy with Hailey --- hope is what gives us purpose. It was not foolish. And as for trying to figure out how to live after losing a child...well clearly that is a work in progress. As I've blogged about before, some days are easier than you might expect and others are every bit the hell you might imagine. This week, I've been trying to accustom myself to the thorn of pain that has lodged itself deeply into my heart. I seem to carry it with me alongside the dreams I had for my daughter and the memories I try to keep alive.
But this week, through my journey with Hailey and with some help from my Mom, I've realized that I will continue to live and love dangerously, and to not mock myself for having hope.
There was no way we could have known that we would lose our daughter, and yet there are moments when I look back to things I remember saying, or how ridiculously excited I was to have a girl, and it is hard not to beat myself up.
I remember the day we went for the ultrasound to find out the gender of our second child. I was almost too scared to hope for a girl. Seeing how much my son favors his father, I so wanted my own mini partner-in-crime. I thought surely God would be too busy to grant me such a wish, but He did! I was so happy, I literally cried. And now, months later, bereft of my daughter and in my ugly moments, I think back to this moment and wonder why we were teased so cruelly.
Knowing I was carrying a girl perhaps made a trying pregnancy somewhat more bearable. It was hard to keep up with my very active son as my belly grew bigger and bigger and the summer heat and humidity grew relentless. I became quite swollen and was often very uncomfortable. Under these circumstances, I remember one evening when I was standing in my neighbor's driveway while our kids played. I'd heard a neighbor up the street had suddenly lost their five month old to SIDS, and my heart broke for her. Hailey was moving in my belly at the time, and running my hand over her to soothe her, I remember telling my neighbor I couldn't imagine how to survive losing a baby after growing it within my body for nine months. Especially when the pregnancy had been as trying as mine was with Hailey. In my small moments, I wonder if the powers at be looked down at me and shook their heads as if to say, "If only she knew what she has coming."
There are moments like this and a million more. The joy I felt at picking out little outfits for our daughter. The time we spent decorating the nursery. I wonder if I was naive. Why did I dare to hope that we could be that happy? That my life could finally be as perfect as I'd ever pictured it could be?
I was adrift in this self-loathing when I spoke to my mother recently. She asked me a question that knocked me back into a healthier perspective. "Imagine if we had foresight and not just hindsight? Imagine if we could see it all coming? Would people still dare to live their lives?"
If I had known that we would lose our daughter due to a freakishly rare genetic condition that my husband and I are both carriers for, would I have dared to marry my husband? Would we have dared to have children? I would like to think the answer to both of those questions would still be "YES", but there is no way to know for sure.
The thing is, we are all living and loving dangerously. None of us know what will happen tomorrow. None of it is guaranteed. I can't dismiss the hope I had for my pregnancy with Hailey --- hope is what gives us purpose. It was not foolish. And as for trying to figure out how to live after losing a child...well clearly that is a work in progress. As I've blogged about before, some days are easier than you might expect and others are every bit the hell you might imagine. This week, I've been trying to accustom myself to the thorn of pain that has lodged itself deeply into my heart. I seem to carry it with me alongside the dreams I had for my daughter and the memories I try to keep alive.
But this week, through my journey with Hailey and with some help from my Mom, I've realized that I will continue to live and love dangerously, and to not mock myself for having hope.
Thursday, April 13, 2017
We Differ in Purpose, Not Importance
While scrolling through Facebook today, I stumbled across an article about a woman who found out she had stage four cancer while she was pregnant with her first child. She was induced when the baby was 33 weeks old, and then she pursued aggressive treatment in the face of overwhelming odds. Miraculously, she was spared, and went on to have two more children. Today, she advises people to never give up.
I think when some people see stories like this, they wonder why this woman was deserving of a miracle when their mother or brother or daughter or best friend was not spared from whatever fate took their lives. I have such moments of pain, when I wonder why some are spared and my daughter was taken. Were we not worthy of the miracle we prayed so hard for while sweet Hailey was still alive?
Yes, this goes back to my earlier blog post about asking "Why NOT me?". It also goes toward something I want to teach our son. I want him to know he is important. To me, to his Daddy, and to all our extended family. I want him to know he has a place in this world and is valued. But what I will also teach our son is that everyone is important to someone.
When you spend time in a hospital with someone who is severely sick, you realize illness is the great equalizer. It really doesn't matter if you are wealthy or famous or brilliant or incredibly attractive or the opposite of all of those things. Sickness doesn't discriminate. We prayed so hard for our daughter, but every other parent in the NICU likely prayed just as hard for their children.
And so, through my walk with Hailey, I came to this realization: we, as individuals, do not differ in importance but in purpose. I don't know why that pregnant woman was miraculously cured of her cancer, but it comes at no cost to me or my family. I cannot know God's purpose for her, or perhaps even for the additional children she bore that she otherwise wouldn't have. They may do great things. My daughter's purpose was determined to be different, and maybe someday, someone will do great things because of the lessons I'm sharing from her. I still wish it could have been different. It still hurts. But I press on. It is all I can do. Sometimes I'm amazed that I'm still standing.
Over the past week or two, there have been many days when I've been filled with worry. We are moving halfway across the country in a month, and then my husband will deploy. He went away for just one week recently, and I noticed how much harder my grief became when he was not with me. Which is funny, because we don't talk about it all the time, or I don't always need him to hold me when I cry. But I guess my husband's presence in the home in and of itself calms me.
Truthfully, I've been indulging in a pity party. Some nights while my husband was gone, I'd cry myself to sleep. Sobbing and asking God how hard life is supposed to get. But I cannot know what He has in store for us. And when the news broke about the chemical attack in Syria and I saw the footage of the man who lost more than twenty members of his family, to include his precious twins who appeared to be close to my son's age, I felt ashamed. I thought again of the man who lost his entire family to a shipwreck and then penned, "It is Well with My Soul." My suffering is nothing compared to these men.
And so I remind myself: We differ in purpose, not importance. And there is always, always, always, someone else out there walking a harder road than our own. So I can be thankful, not resentful.
I think when some people see stories like this, they wonder why this woman was deserving of a miracle when their mother or brother or daughter or best friend was not spared from whatever fate took their lives. I have such moments of pain, when I wonder why some are spared and my daughter was taken. Were we not worthy of the miracle we prayed so hard for while sweet Hailey was still alive?
Yes, this goes back to my earlier blog post about asking "Why NOT me?". It also goes toward something I want to teach our son. I want him to know he is important. To me, to his Daddy, and to all our extended family. I want him to know he has a place in this world and is valued. But what I will also teach our son is that everyone is important to someone.
When you spend time in a hospital with someone who is severely sick, you realize illness is the great equalizer. It really doesn't matter if you are wealthy or famous or brilliant or incredibly attractive or the opposite of all of those things. Sickness doesn't discriminate. We prayed so hard for our daughter, but every other parent in the NICU likely prayed just as hard for their children.
And so, through my walk with Hailey, I came to this realization: we, as individuals, do not differ in importance but in purpose. I don't know why that pregnant woman was miraculously cured of her cancer, but it comes at no cost to me or my family. I cannot know God's purpose for her, or perhaps even for the additional children she bore that she otherwise wouldn't have. They may do great things. My daughter's purpose was determined to be different, and maybe someday, someone will do great things because of the lessons I'm sharing from her. I still wish it could have been different. It still hurts. But I press on. It is all I can do. Sometimes I'm amazed that I'm still standing.
Over the past week or two, there have been many days when I've been filled with worry. We are moving halfway across the country in a month, and then my husband will deploy. He went away for just one week recently, and I noticed how much harder my grief became when he was not with me. Which is funny, because we don't talk about it all the time, or I don't always need him to hold me when I cry. But I guess my husband's presence in the home in and of itself calms me.
Truthfully, I've been indulging in a pity party. Some nights while my husband was gone, I'd cry myself to sleep. Sobbing and asking God how hard life is supposed to get. But I cannot know what He has in store for us. And when the news broke about the chemical attack in Syria and I saw the footage of the man who lost more than twenty members of his family, to include his precious twins who appeared to be close to my son's age, I felt ashamed. I thought again of the man who lost his entire family to a shipwreck and then penned, "It is Well with My Soul." My suffering is nothing compared to these men.
And so I remind myself: We differ in purpose, not importance. And there is always, always, always, someone else out there walking a harder road than our own. So I can be thankful, not resentful.
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