Please don’t say any sentence beginning with the words, "At least..." We do this all the time in other circumstances, trying to look on the ‘bright side’ of whatever is happening to us. However, there is no 'bright side' to loss. When you begin a sentence with "at least," it trivializes the person’s loss, minimizes their pain, and invalidates their feelings. You are saying that this individual has no right to hurt so deeply because it could have been worse (in your eyes). Many of these comments are specific to the loss of a child, but “At least…” sentences should be avoided no matter the age of the lost loved one.
"At least he is in a better place," or, "At least she is in Heaven now." – I personally believe that Katie and Lilly are both in heaven and that I will see them there some day. However, even knowing that they are both happy in heaven with Jesus does not make me miss them any less. We still wish our lost loved ones were with us, here, now, always. Yes, Katie went through a lot while she was with us. She endured more as a newborn than anyone should ever have to endure. However, she also got to experience many good and happy moments and part of me will always wish she could have experienced so many more positive things over the course of a long, long life. Lilly lived long enough to experience the comfort of the womb for a time. But there will always be so much more that I wish both of them could have had in this life.
"At least you can have more children," or, "At least you know you can get pregnant." – Nope, nope, nope. So much nope. Don’t say it, don’t even think it. This is not a test run. My child is not the first pancake in the batch. My daughters are not a loaf of bread that failed to rise. They are human beings. They are people. They are children. They are irreplaceable, precious, and loved.
Also, the ability to get pregnant does not ease the fear of being unable to have healthy, living children. For me, it took a lot of help to manage this fear. This comment doesn’t help.
"At least you lost it early." – Having experienced both an infant loss and a miscarriage, I have known two different types of grief. Notice I said different. Not better. Not worse. Losing a child (not an it) in the womb does not hurt any less than losing a child at any age. It hurts differently. Children are special and unique individuals and I mourn all of the things that Lilly didn't get to experience just as I mourn all of the things that I miss about Katie. Dismissing someone’s grief because they suffered an early loss is not comforting at all.
"At least you have other children." – Again, children are not pancakes, eggs in a basket, or loaves of bread. You cannot seriously think that just because someone has a few left over, that it’s ok to lose one or two. They are children, and they are irreplaceable, precious, and loved. The ones that remain are also children, not Band-Aids or Prozac. They are not there to make the family feel better. In fact, they are experiencing the loss of a sibling at the same time that their parents are experiencing the loss of a child. The parent does not need their loss to be trivialized, and the surviving children do not need to feel burdened to make anyone else feel better. This statement is so, so harmful and should be avoided.
"At least you got to hold her." – Even with the best of intentions, this comment only serves to highlight all of the things that we did not get to experience with our loved one. When I received this comment, it was not said with good intentions in mind at all. A close relative said this to me when we lost Katie. “At least YOU got to hold her! I didn’t even get to hold her!”
This was said about my critically ill, heart baby. My newborn baby, who had so many tubes, wires, and lines hooked up to her for the first few weeks of her life that even I was unable to hold her. When I was finally able to hold her, it took at least one nurse to help move her and all of her tubes and wires into my arms and we were only able to do it once or twice a day for a short time. Even after most of her lines were out and she was off the ventilator, she then had to have a feeding tube placed, which was incredibly uncomfortable for her. In addition, we were told by her medical professionals that we should limit her exposure to germs and other people because if she were to fall ill before her second heart surgery, it would not be good (they were right). So no one held her other than me and my husband. We enforced strict policies about hand-washing and disinfecting for our visitors and the list of allowed visitors was very limited.
All of this happened during what is referred to as the fourth trimester, a period of time after birth when a newborn is still adjusting to life outside the womb and needs the comfort and closeness of her mother. My first daughter didn’t get to have a fourth trimester because of her medical needs, but we gave her what we could. Even my husband didn’t get to hold her very often. However, this person felt that she was entitled to this experience with our child. Even though what was best for my daughter was to be germ-free and have all the limited love and cuddles she could get with mommy and daddy, this person felt it was her right to take one of those few precious moments away from us as the parents.
Let me be very clear. The feelings, wants, and desires of a grown adult will never, ever, ever be more important than the health, safety, and physical/emotional wellbeing of a child. This statement is best avoided even if you are trying to be comforting by pointing out the good experiences that were shared with the person’s lost loved one. If you are making this statement out of anger, entitlement, or hate, then stop and take a look at your motives. Are you trying to comfort the bereaved or are you trying to inflict more pain? If it is the latter, then perhaps you should rethink saying anything at all.
Thursday, January 14, 2016
Friday, January 8, 2016
What Not To Say to Someone Experiencing Grief – Part One
This post is a difficult one to write because it may offend you or make you uncomfortable. If you are reading this from the perspective of someone who has not suffered grief, my hope is that you will still take it to heart and remember it when talking to loved ones or friends who are experiencing something that you (hopefully) will never understand. If you are reading this from the other side of the coin, my hope is that it brings you comfort to know that you are not alone and it is normal to feel hurt, offended, or even bitter when on the receiving end of any of these well-intentioned (or not) comments and perhaps it will save some of us from having to listen to them in the future. This also ended up longer than expected, so I will be discussing each comment separately.
There are many types of grief. You could be grieving the loss of a parent, a friend, a spouse, or even a child. You could be grieving an estranged family member. You may be grieving an unwelcome diagnosis, either for yourself or someone you love. You may be grieving an expected loss or an unexpected loss. Not all grief is experienced the same. When Katie was first diagnosed with a heart issue, my husband and I suffered grief knowing that she would have to experience many things that we did not want her to go through. When she passed away, we suffered her loss. When we miscarried Lilly, we suffered the loss of never getting to know our child while on this earth. Each of these experiences was different in its impact, which has taught me that grief is a profoundly personal experience.
“God has a plan.” – Don’t get me wrong, I am a believer in Jesus Christ. I KNOW that God has a plan. However, this is not it and therefore it is inappropriate to say to a person who is experiencing grief.
Let me repeat that. My loss, your loss, is not God’s plan. In the beginning, God did not think to Himself how awesome it would be to let my babies die. You know how I know this? Because the Bible says it straight up:
“’For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future.’” Jeremiah 29:11
God’s plan is for us to live with him eternally, to experience His perfect love together with Him forever. However, He loves us so much that He also respects us as autonomous people, and much like we do with our own children He allows us to make mistakes. And Adam and Eve done messed up God’s original plan in the Garden of Eden, when they allowed sin and suffering and death to enter the perfect world that God had created. It is because of that sin and suffering and death that we now have to experience grief and separation from God.
Now stop for a moment, because I am by no means saying that we did something wrong so God takes our loved ones to punish us. When Katie was born with HLHS, I took comfort in the following verses:
“As he went along, he saw a man blind from birth. His disciples asked Him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him.’” John 9:1-3
Even though the man’s sins (or his parents’ sins) were not at fault for his diagnosis, Jesus was still able to use the man’s condition for His glory. Not that that makes it any easier for those of us whose loved ones are not instantaneously healed on the side of the road as we are traveling to Starbucks. Sometimes our loved ones die and we suffer grief because we live in an imperfect world where death and suffering exist.
Thankfully, God also loves us so much that He made another way for His plans to succeed (because they will… I read ahead and He wins). He decided that He was willing to endure a double whammy of grief Himself… for us. He allowed Himself to personally experience rejection, torture, and death to pay the price for our sins. He also (since He is the Father, the Son, and the Spirit at the same time) simultaneously suffered the loss of His only begotten child, Jesus. That is a sacrifice that not one of us would willingly make ourselves, yet He did so that we could again be reconciled to Him and be part of His plan to spend eternity in love and joy with Him. It does bring some comfort to know that even though Katie and Lilly’s deaths were not a part of God’s plan, their eternal life in Heaven IS part of His plan so I know that I will see them again eventually, even though it hurts while we are apart.
There are many types of grief. You could be grieving the loss of a parent, a friend, a spouse, or even a child. You could be grieving an estranged family member. You may be grieving an unwelcome diagnosis, either for yourself or someone you love. You may be grieving an expected loss or an unexpected loss. Not all grief is experienced the same. When Katie was first diagnosed with a heart issue, my husband and I suffered grief knowing that she would have to experience many things that we did not want her to go through. When she passed away, we suffered her loss. When we miscarried Lilly, we suffered the loss of never getting to know our child while on this earth. Each of these experiences was different in its impact, which has taught me that grief is a profoundly personal experience.
“God has a plan.” – Don’t get me wrong, I am a believer in Jesus Christ. I KNOW that God has a plan. However, this is not it and therefore it is inappropriate to say to a person who is experiencing grief.
Let me repeat that. My loss, your loss, is not God’s plan. In the beginning, God did not think to Himself how awesome it would be to let my babies die. You know how I know this? Because the Bible says it straight up:
“’For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future.’” Jeremiah 29:11
God’s plan is for us to live with him eternally, to experience His perfect love together with Him forever. However, He loves us so much that He also respects us as autonomous people, and much like we do with our own children He allows us to make mistakes. And Adam and Eve done messed up God’s original plan in the Garden of Eden, when they allowed sin and suffering and death to enter the perfect world that God had created. It is because of that sin and suffering and death that we now have to experience grief and separation from God.
Now stop for a moment, because I am by no means saying that we did something wrong so God takes our loved ones to punish us. When Katie was born with HLHS, I took comfort in the following verses:
“As he went along, he saw a man blind from birth. His disciples asked Him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him.’” John 9:1-3
Even though the man’s sins (or his parents’ sins) were not at fault for his diagnosis, Jesus was still able to use the man’s condition for His glory. Not that that makes it any easier for those of us whose loved ones are not instantaneously healed on the side of the road as we are traveling to Starbucks. Sometimes our loved ones die and we suffer grief because we live in an imperfect world where death and suffering exist.
Thankfully, God also loves us so much that He made another way for His plans to succeed (because they will… I read ahead and He wins). He decided that He was willing to endure a double whammy of grief Himself… for us. He allowed Himself to personally experience rejection, torture, and death to pay the price for our sins. He also (since He is the Father, the Son, and the Spirit at the same time) simultaneously suffered the loss of His only begotten child, Jesus. That is a sacrifice that not one of us would willingly make ourselves, yet He did so that we could again be reconciled to Him and be part of His plan to spend eternity in love and joy with Him. It does bring some comfort to know that even though Katie and Lilly’s deaths were not a part of God’s plan, their eternal life in Heaven IS part of His plan so I know that I will see them again eventually, even though it hurts while we are apart.
Friday, February 27, 2015
Blessings
Today I look back and think of all the wonderful blessings God has given us and my heart is overwhelmed. Yesterday, we took Ian out sledding for the first time (on the almost non-existent snow, haha) and it was amazing to see his little face lit up with such joy. We thank God for each day with Ian and for all the days to come. Even through tough times that lie ahead, we know that God is already there, already with us, never leaving, never forsaking. Even in the fun, joyful moments, He is there. In every moment, He leads us and loves us. God knows the plans He has for us, and He will be there with us, sometimes walking with us, sometimes carrying us until we see Him again.
Tuesday, July 15, 2014
I Couldn't Love You More - by Jason Ingam and Matt Hammitt
Went by the bookstore today and found this:
A book by Jason Ingram and Matt Hammitt based on the song from Matt Hammitt's Every Falling Tear CD. Katie listened to this song almost every day of her life. A portion of the proceeds go to the Whole Hearts Foundation to help children born with heart defects. What a great way to share Jesus with Ian and honor the memory of his big sis at the same time!
http://www.wholehearts.org/
http://bowensheart.com/
A book by Jason Ingram and Matt Hammitt based on the song from Matt Hammitt's Every Falling Tear CD. Katie listened to this song almost every day of her life. A portion of the proceeds go to the Whole Hearts Foundation to help children born with heart defects. What a great way to share Jesus with Ian and honor the memory of his big sis at the same time!
http://www.wholehearts.org/
http://bowensheart.com/
Tuesday, March 11, 2014
For Heart Mommies and Daddies
This post is for any heart parents who are trying or someday plan on trying for another child. It is a post that we have struggled with but in good conscience cannot remain silent on. This is the story of how we believe (through the Grace of God) we were finally able to have a healthy child.
When Katie was first diagnosed, we were told by the doctors that the cause of HLHS was unknown. That there was nothing we could have done to cause or prevent her heart defect. My OB said it was, "a random fluke and probably won't happen again." When I asked if there were any tests we could run on me or if we could check to see if I was deficient in any vitamins before getting pregnant again, he said it was unnecessary.
"How old are you?" Was one of the comments we received when first announcing our second pregnancy. As though my age was to blame for what had happened. That really, truly hurt and is one reason that I am even still reluctant to post. It's not easy to think about your age or your body being responsible for your child's death but its even worse to find out that other people are thinking it. A week and a half later, I would miscarry, making my self-doubt all the greater.
I was worried that the statement might be true. That in my early 30s I might already be too old to successfully have children. It was devastating. I wanted desperately for there to be something I could DO to prevent this from happening again.
We requested that testing be done on Lily after she passed to see if there was anything wrong. The results showed another seemingly unrelated "random fluke" that according to my doctor once more, "probably wouldn't happen again."
At that point we no longer believed our doctors. This was one too many random flukes to be plausible. The bible tells us to ask, seek, and knock. Up to this point we had only been asking. We prayed daily for God to provide us with healthy children or for Him to take the desire for children from us so that it would not be as painful.
The point at which we lost faith in our doctors was the point that we began to seek. We started doing our own research and God led us to read about a gene called MTHFR, which is responsible for breaking down and processing b vitamins in the body, including folic acid. Folic acid is a synthetic form of folate, which is incredibly important in cell reproduction and proper development in babies. It is the vitamin that doctors tell pregnant women to supplement above all else. It is the vitamin that the US government requires all wheat products to be supplemented with in order to reduce birth defects across the nation. It is also the vitamin that, due to its synthetic nature, people with certain MTHFR gene variations have trouble breaking down and processing.
Folate deficiencies can cause defects of the heart, brain, and spinal column. It could explain both of our losses. So far we had asked God for children in prayer. We sought out the information we believe He wanted us to have. At this point it was time to knock, to take action based on what we had found out. I went to my OB with the information and asked to be tested. He refused, saying he didn't believe it had anything to do with our losses. We went to a different doctor who agreed to the test.
The results showed that I am heterozygeous for an a1298c MTHFR gene defect, which slightly reduces my ability to process synthetic folic acid. This is one of several MTHFR defects possible and it is the one that is considered not so bad. The one that many doctors still claim have no affect on one's ability to have healthy children. Thankfully, we didn't need a doctor to believe us in order to treat it. The main treatment is to switch from synthetic folic acid (which requires several steps for the body to break down) to methylfolate, an already broken down form of folate. There were other things I could do to help as well. I switched to a prenatal that is easier for me to absorb. I took additional methylfolate and other b vitamins in thier easy to absorb forms. I changed my diet in order to avoid synthetic folic acid (which can actually block absorption of methylfolate. I cut a lot of stress out of my life. We took all of the steps we could think of to better our chances of a healthy child.
After having taken the new vitamins for a few months to allow them to get into my system, we began trying again. We didn't stop researching though. I went to see another doctor who suggested that I also get tested for hypothyroidism, which if left untreated can also cause birth defects. So far that month, pregnancy tests had been turning up negative so we decided to hold off a month to see what the hypothyroidism test said. Lo and behold a few days later on a Saturday I ended up taking another pregnancy test and this time it was positive! My hypothyroid test results came back that Monday so needless to say I called the doctor immediately to be put on medicine for hypothyroidism as well.
We believe that it was a combination of the MTHFR and hypothyroidism that prevented us from having healthy children. It was nothing we did. It was not my age. This is the way God created me and he created Katie and Lily according to His design also. But he did give us something that we could do to prevent it from happening again. We have felt led to share this information now that Ian is here safe and sound and healthy in the hope that someone else will be able to put it to good use as well. We are not saying that this is THE cause of HLHS but that it could be A cause and that there is a very simple fix if that is the case.
When Katie was first diagnosed, we were told by the doctors that the cause of HLHS was unknown. That there was nothing we could have done to cause or prevent her heart defect. My OB said it was, "a random fluke and probably won't happen again." When I asked if there were any tests we could run on me or if we could check to see if I was deficient in any vitamins before getting pregnant again, he said it was unnecessary.
"How old are you?" Was one of the comments we received when first announcing our second pregnancy. As though my age was to blame for what had happened. That really, truly hurt and is one reason that I am even still reluctant to post. It's not easy to think about your age or your body being responsible for your child's death but its even worse to find out that other people are thinking it. A week and a half later, I would miscarry, making my self-doubt all the greater.
I was worried that the statement might be true. That in my early 30s I might already be too old to successfully have children. It was devastating. I wanted desperately for there to be something I could DO to prevent this from happening again.
We requested that testing be done on Lily after she passed to see if there was anything wrong. The results showed another seemingly unrelated "random fluke" that according to my doctor once more, "probably wouldn't happen again."
At that point we no longer believed our doctors. This was one too many random flukes to be plausible. The bible tells us to ask, seek, and knock. Up to this point we had only been asking. We prayed daily for God to provide us with healthy children or for Him to take the desire for children from us so that it would not be as painful.
The point at which we lost faith in our doctors was the point that we began to seek. We started doing our own research and God led us to read about a gene called MTHFR, which is responsible for breaking down and processing b vitamins in the body, including folic acid. Folic acid is a synthetic form of folate, which is incredibly important in cell reproduction and proper development in babies. It is the vitamin that doctors tell pregnant women to supplement above all else. It is the vitamin that the US government requires all wheat products to be supplemented with in order to reduce birth defects across the nation. It is also the vitamin that, due to its synthetic nature, people with certain MTHFR gene variations have trouble breaking down and processing.
Folate deficiencies can cause defects of the heart, brain, and spinal column. It could explain both of our losses. So far we had asked God for children in prayer. We sought out the information we believe He wanted us to have. At this point it was time to knock, to take action based on what we had found out. I went to my OB with the information and asked to be tested. He refused, saying he didn't believe it had anything to do with our losses. We went to a different doctor who agreed to the test.
The results showed that I am heterozygeous for an a1298c MTHFR gene defect, which slightly reduces my ability to process synthetic folic acid. This is one of several MTHFR defects possible and it is the one that is considered not so bad. The one that many doctors still claim have no affect on one's ability to have healthy children. Thankfully, we didn't need a doctor to believe us in order to treat it. The main treatment is to switch from synthetic folic acid (which requires several steps for the body to break down) to methylfolate, an already broken down form of folate. There were other things I could do to help as well. I switched to a prenatal that is easier for me to absorb. I took additional methylfolate and other b vitamins in thier easy to absorb forms. I changed my diet in order to avoid synthetic folic acid (which can actually block absorption of methylfolate. I cut a lot of stress out of my life. We took all of the steps we could think of to better our chances of a healthy child.
After having taken the new vitamins for a few months to allow them to get into my system, we began trying again. We didn't stop researching though. I went to see another doctor who suggested that I also get tested for hypothyroidism, which if left untreated can also cause birth defects. So far that month, pregnancy tests had been turning up negative so we decided to hold off a month to see what the hypothyroidism test said. Lo and behold a few days later on a Saturday I ended up taking another pregnancy test and this time it was positive! My hypothyroid test results came back that Monday so needless to say I called the doctor immediately to be put on medicine for hypothyroidism as well.
We believe that it was a combination of the MTHFR and hypothyroidism that prevented us from having healthy children. It was nothing we did. It was not my age. This is the way God created me and he created Katie and Lily according to His design also. But he did give us something that we could do to prevent it from happening again. We have felt led to share this information now that Ian is here safe and sound and healthy in the hope that someone else will be able to put it to good use as well. We are not saying that this is THE cause of HLHS but that it could be A cause and that there is a very simple fix if that is the case.
Resources
Below is the research I found when trying to determine if MTHFR was what might be causing our babies birth defects. Feel free to use this compilation to present evidence to your doctor if he/she is ignorant of MTHFR and PLEASE feel free to add links to your own research as well in the comments if you know of an article or study that may be of interest to any heart mommas and papas.
Also, the vitamin regimen I was on is as follows. Make sure you check with your doctor or nutritionist when pregnant and changing your supplements.
www.ncbi.nlm.nih.gov/pubmed/22047507
www.ncbi.nlm.nih.gov/pubmed/10500018
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(03)13080-2/abstract
www.ncbi.nlm.nih.gov/pubmed/11807890
http://www.cell.com/AJHG/abstract/S0002-9297(07)63249-2
www.ncbi.nlm.nih.gov/pubmed/23184006
www.jpands.org/vol9no4/boris.pdf
www.ncbi.nlm.nih.gov/pubmed/23201418
www.ncbi.nlm.nih.gov/pubmed/22868813
http://ajcn.nutrition.org/content/70/4/495.short
www.ncbi.nlm.nih.gov/pmc/articles/PMC1287522
www.ncbi.nlm.nih.gov/pmc/articles/PMC2910950/?report=printable
www.ncbi.nlm.nih.gov/pubmed/20657745
www.ncbi.nlm.nih.gov/pubmed/23234018
www.ncbi.nlm.nih.gov/pubmed/23295071
Articles:
http://www.healthline.com/health-blogs/fruit-womb/mthfr-mutations-and-congenital-heart-defects
http://www.dshs.state.tx.us/birthdefects/risk/risk-hlhs.shtm
http://holisticprimarycare.net/topics/topics-a-g/functional-medicine/1353-mthfr-mutation-a-missing-piece-in-the-chronic-disease-puzzle
http://mthfr.net/recurrent-pregnancy-loss-mthfr/2012/06/07/
http://www.healthline.com/health-blogs/fruit-womb/down-syndrome-and-folate-metabolism-2
www.nwhealthcare.net/index.php?id=64
http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/
http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/
http://dpuadweb.depauw.edu/$1~cfornari/disgen/webpage/diagnosis.htm
Also, the vitamin regimen I was on is as follows. Make sure you check with your doctor or nutritionist when pregnant and changing your supplements.
- Thornes Basic Prenatal (contains methylfolate and other bioavailable vitamins that are easier to absorb)
- Extra methylfolate (B9) instead of folic acid and methylcobalamin (B12)
- Daily DHA supplement
- Calcium supplement
- Probiotic
- Flax Seed
- Change of diet including eliminating wheat and reducing my intake of dairy and sugar.
Research Abstracts/Studies:
http://eurheartj.oxfordjournals.org/content/27/8/981www.ncbi.nlm.nih.gov/pubmed/22047507
www.ncbi.nlm.nih.gov/pubmed/10500018
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(03)13080-2/abstract
www.ncbi.nlm.nih.gov/pubmed/11807890
http://www.cell.com/AJHG/abstract/S0002-9297(07)63249-2
www.ncbi.nlm.nih.gov/pubmed/23184006
www.jpands.org/vol9no4/boris.pdf
www.ncbi.nlm.nih.gov/pubmed/23201418
www.ncbi.nlm.nih.gov/pubmed/22868813
http://ajcn.nutrition.org/content/70/4/495.short
www.ncbi.nlm.nih.gov/pmc/articles/PMC1287522
www.ncbi.nlm.nih.gov/pmc/articles/PMC2910950/?report=printable
www.ncbi.nlm.nih.gov/pubmed/20657745
www.ncbi.nlm.nih.gov/pubmed/23234018
www.ncbi.nlm.nih.gov/pubmed/23295071
Articles:
http://www.healthline.com/health-blogs/fruit-womb/mthfr-mutations-and-congenital-heart-defects
http://www.dshs.state.tx.us/birthdefects/risk/risk-hlhs.shtm
http://holisticprimarycare.net/topics/topics-a-g/functional-medicine/1353-mthfr-mutation-a-missing-piece-in-the-chronic-disease-puzzle
http://mthfr.net/recurrent-pregnancy-loss-mthfr/2012/06/07/
http://www.healthline.com/health-blogs/fruit-womb/down-syndrome-and-folate-metabolism-2
www.nwhealthcare.net/index.php?id=64
http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/
http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/
http://dpuadweb.depauw.edu/$1~cfornari/disgen/webpage/diagnosis.htm
Friday, March 7, 2014
Catching up
Wow, its hard to believe that it has been over a year since we last posted. So much has happened in the past year, both good and bad. Two years ago today, our daughter Katie had successfully made it through her first surgery and was waiting for the swelling in her chest to go down enough to be able to close her back up. It is incredibly hard to see any child like that but even more so when the child is your own.
One of the things that helped us find comfort in those days were the blogs of other heart mommies and daddies and their stories of how their little ones were thriving. It made it easier to believe that the same would happen for Katie. It was one of the reasons why we starting blogging, in the hopes that other couples in the same situation could find comfort and hope.
When she passed away, I went looking for a different kind of blog. Blogs of the parents who were not quite so fortunate. I was searching for a glimmer of hope. A way to survive what happened. A light at the end of the tunnel. What I found was the blog of a couple whose daughter had also passed away from a very severe heart defect. They had gone on to have a wonderfully healthy baby and were able to find peace and healing. This gave me hope that we could do the same and this is the reason why I am writing again.
But it would be a long struggle for us. Those who haven't been there will never understand how stressful it is to try to get pregnant again after a loss. To carry a baby after a loss. Add onto that some major family drama and the level of stress and fear that we were under was unbearable. I was having panic attacks pretty regularly during this time. It was difficult to even think of telling people when we finally managed to get pregnant again. We waited until I was about 11 weeks along with Lily before starting to announce the pregnancy and due to fear of another loss and a hurtful comment during that stressful announcement, we didn't really spread the word much after that. Many people didn't realize we were were pregnant until I miscarried at 12 weeks 5 days and some not until I posted on Katie's birthday last year.
I will always regret how I let fear and stress suck all of the joy out of my pregnancy with Lily. That was the only time I will ever have with her and I will never get it back. I allowed the fear of losing my baby and the stress to steal the joy of new life. It took me a few months to process this but afterwards, I vowed that if God ever blessed us with another child that I would do my best to enjoy and appreciate each day that I woke up still pregnant, because that might be all we get. We prayed that God would either bless us with healthy living children someday or to help us find contentment and peace without.
When we were ready to start trying again, we found out that some well loved members of our church family were also on a similar journey to expand their families and I cannot begin to describe what a wonderful blessing it was to share this journey with them. We were able to pray for each other and provide a much needed support system for each other during a difficult, yet hopeful, time in all of our lives. I will not share names to protect their privacy but you guys know who you are and we love you!
After a lot of research, I changed my diet and my vitamins and cut out as much stress as I possibly could. Not very many people knew when we became pregnant with our third child. Only if you've lost a child can you understand the excitement and desire to share mixed with the fear that if you do tell, that you will end up having to call those same people back a few weeks later to share another loss. Each day I repeated the mantra, "Today I am pregnant!" Each day we did our best to pray about our many fears instead of worrying about them and to appreciate each day with our baby as though it might be the last.
We had some scares early on. The first time the midwife went to listen to the heart beat, she couldn't find it with the doppler. After an agonizing 10 minutes or so, ultrasound showed a tiny peanut with a steady heartbeat. I sobbed with joy that our baby was still alive. The first three or four times the midwife tried to use the doppler the same thing happened. I think I cried at every appointment until well after I could feel the baby moving regularly.
We had another scare on Mother's Day of last year. We went for a walk and I had a small bit of bleeding. I thought for sure I was going to miscarry at that point because it was around the same point that I miscarried Lily. But praise the Lord! Ultrasound showed a thriving baby and that the bleeding was probably due to a marginal placenta previa which corrected itself as time went on.
As the weeks rolled by I began to feel little flutters. You know, the ones that stop before you are sure if it is really baby or gas. These developed into reassuring kicks and punches, which assured me on a daily basis that our baby was still alive.
The next big milestone was our 20 week ultrasound where they would look at the development of the baby's anatomy. I was so nervous that morning that I ended up puking in the sink even though morning sickness was long past. When we got to the appointment, it was all we could do to hold each other's hand reassuringly as the ultrasound tech did her job. She carefully examined each structure and we waited and prayed with baited breath as she described each healthy limb and organ. Only after she looked at the heart and reassured us that all four chambers were there did we exhale and break down in tears of joy and relief, praising God for his great mercy and compassion.
Later, a fetal echo and a final ultrasound to more closely examine the heart, brain, and spinal cord would further reassure us. Our baby boy was healthy.
The prayers and pleas did not stop there though. One thing that very rare conditions make you aware of is that the rare catastrophies do happen and they do happen to somebody and that somebody can very well be you. Even healthy babies can get sick. A million and one "could happens" were and will always be on our minds. But from what I understand - this is parenthood. Even parents who have not lost a child worry about the health and happiness of their kids. What a blessing to have a child to worry and pray over!
The day our son was born was the most wonderful blessing. The moment they placed him on my chest and I realized that they were not going to whisk him away from us was amazing. We thank God for hearing us in our time of pain and for giving us the desire of our hearts - a healthy, living child.
This is getting extremely long so I will wrap it up here, but we wanted to finally share our good news and most of all, hopefully provide encouragement to couples who are facing the same struggles that we have. To let them know that the road to healing is a long one with many bumps along the way. It is a road we are still traveling on and will be until the day we are reunited with all of our children in heaven. But it is also a road with many blessings. With happiness and joy. And somehow each bump seems smaller than it once would have and each blessing is more appreciated.
One of the things that helped us find comfort in those days were the blogs of other heart mommies and daddies and their stories of how their little ones were thriving. It made it easier to believe that the same would happen for Katie. It was one of the reasons why we starting blogging, in the hopes that other couples in the same situation could find comfort and hope.
When she passed away, I went looking for a different kind of blog. Blogs of the parents who were not quite so fortunate. I was searching for a glimmer of hope. A way to survive what happened. A light at the end of the tunnel. What I found was the blog of a couple whose daughter had also passed away from a very severe heart defect. They had gone on to have a wonderfully healthy baby and were able to find peace and healing. This gave me hope that we could do the same and this is the reason why I am writing again.
But it would be a long struggle for us. Those who haven't been there will never understand how stressful it is to try to get pregnant again after a loss. To carry a baby after a loss. Add onto that some major family drama and the level of stress and fear that we were under was unbearable. I was having panic attacks pretty regularly during this time. It was difficult to even think of telling people when we finally managed to get pregnant again. We waited until I was about 11 weeks along with Lily before starting to announce the pregnancy and due to fear of another loss and a hurtful comment during that stressful announcement, we didn't really spread the word much after that. Many people didn't realize we were were pregnant until I miscarried at 12 weeks 5 days and some not until I posted on Katie's birthday last year.
I will always regret how I let fear and stress suck all of the joy out of my pregnancy with Lily. That was the only time I will ever have with her and I will never get it back. I allowed the fear of losing my baby and the stress to steal the joy of new life. It took me a few months to process this but afterwards, I vowed that if God ever blessed us with another child that I would do my best to enjoy and appreciate each day that I woke up still pregnant, because that might be all we get. We prayed that God would either bless us with healthy living children someday or to help us find contentment and peace without.
When we were ready to start trying again, we found out that some well loved members of our church family were also on a similar journey to expand their families and I cannot begin to describe what a wonderful blessing it was to share this journey with them. We were able to pray for each other and provide a much needed support system for each other during a difficult, yet hopeful, time in all of our lives. I will not share names to protect their privacy but you guys know who you are and we love you!
After a lot of research, I changed my diet and my vitamins and cut out as much stress as I possibly could. Not very many people knew when we became pregnant with our third child. Only if you've lost a child can you understand the excitement and desire to share mixed with the fear that if you do tell, that you will end up having to call those same people back a few weeks later to share another loss. Each day I repeated the mantra, "Today I am pregnant!" Each day we did our best to pray about our many fears instead of worrying about them and to appreciate each day with our baby as though it might be the last.
We had some scares early on. The first time the midwife went to listen to the heart beat, she couldn't find it with the doppler. After an agonizing 10 minutes or so, ultrasound showed a tiny peanut with a steady heartbeat. I sobbed with joy that our baby was still alive. The first three or four times the midwife tried to use the doppler the same thing happened. I think I cried at every appointment until well after I could feel the baby moving regularly.
We had another scare on Mother's Day of last year. We went for a walk and I had a small bit of bleeding. I thought for sure I was going to miscarry at that point because it was around the same point that I miscarried Lily. But praise the Lord! Ultrasound showed a thriving baby and that the bleeding was probably due to a marginal placenta previa which corrected itself as time went on.
As the weeks rolled by I began to feel little flutters. You know, the ones that stop before you are sure if it is really baby or gas. These developed into reassuring kicks and punches, which assured me on a daily basis that our baby was still alive.
The next big milestone was our 20 week ultrasound where they would look at the development of the baby's anatomy. I was so nervous that morning that I ended up puking in the sink even though morning sickness was long past. When we got to the appointment, it was all we could do to hold each other's hand reassuringly as the ultrasound tech did her job. She carefully examined each structure and we waited and prayed with baited breath as she described each healthy limb and organ. Only after she looked at the heart and reassured us that all four chambers were there did we exhale and break down in tears of joy and relief, praising God for his great mercy and compassion.
Later, a fetal echo and a final ultrasound to more closely examine the heart, brain, and spinal cord would further reassure us. Our baby boy was healthy.
The prayers and pleas did not stop there though. One thing that very rare conditions make you aware of is that the rare catastrophies do happen and they do happen to somebody and that somebody can very well be you. Even healthy babies can get sick. A million and one "could happens" were and will always be on our minds. But from what I understand - this is parenthood. Even parents who have not lost a child worry about the health and happiness of their kids. What a blessing to have a child to worry and pray over!
The day our son was born was the most wonderful blessing. The moment they placed him on my chest and I realized that they were not going to whisk him away from us was amazing. We thank God for hearing us in our time of pain and for giving us the desire of our hearts - a healthy, living child.
This is getting extremely long so I will wrap it up here, but we wanted to finally share our good news and most of all, hopefully provide encouragement to couples who are facing the same struggles that we have. To let them know that the road to healing is a long one with many bumps along the way. It is a road we are still traveling on and will be until the day we are reunited with all of our children in heaven. But it is also a road with many blessings. With happiness and joy. And somehow each bump seems smaller than it once would have and each blessing is more appreciated.
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