Wednesday, February 3, 2016

What Not To Say To Someone Experiencing Grief - Part Three

I recently asked members of an online support group that I frequent about the types of comments they have heard after receiving their child's diagnosis or, in some cases, after their beloved child had passed. The comments ranged from well meaning (but missing the mark) to downright heartbreaking and cruel.

"God won't give you more than you can handle." and "God knew that your were such a strong mom and that's why God gave you a kid with hlhs." - First of all, these statements imply that God has caused this suffering. That he caused our child's illness or death or diagnosis and apparently did so because He felt we could take it, like He is just trying to toughen us up. I don't believe this at all because we have already established that God has plans NOT to harm us (Jeremiah 29:11). In Part One, we discussed that sin and suffering and death exist in this world because of choices that Adam and Eve made in the Garden of Eden and that God allows this because he loves and respects us enough to make our own choices, even though our choices sometimes have consequences. The consequence of Adam and Eve's decision to introduce sin into this world is that suffering and death now exist.

Secondly, these statements also insinuate that we can handle whatever comes our way. Umm, yeah.... So hear that? My child receives a life-threatening diagnosis or passes away and I'm supposed to say, "Back up folks, I GOT this" like it's no big thing. I've got news. It IS a big thing. It's the worst thing. And we are in no way equipped to handle it at all. Part of being made in God's image means that we love and when someone we love as dearly as our own child is ripped away from us it hurts. It hurts beyond all hurt. Many of us have discovered that the day your child enters this world, you find that you have the ability to love like you've never loved before. Some of us have also discovered that when our child leaves this life, you hurt like you've never hurt before. It is most definitely more that we can handle. Thankfully, God promises that even if we should walk through the valley of the shadow of death, that He will be with us (Psalm 23:4). Because we are NOT strong moms! I never felt more weak in my life than when my baby was suffering and there was nothing I could do to fix it. I never felt more weak than when my babies passed away. Maybe sometimes people say that we are strong because if you believe hard enough that only strong moms and dads go through a loss, then maybe it won't happen to you. We are regular moms and dads too! We never thought that our child would be the one in a hundred, one in a thousand, one in a million. That is something that happens to someone else! Until that someone else is you.

Thankfully, God DOES promise to be with us through whatever we go through. "He gives strength to the weary, and increases the power of the weak." (Isaiah 40:29) "My soul is weary with sorrow; strengthen me according to your word." (Psalm 119:28)

There have been days where only by the grace of God was I able to get out of bed and get through the day. There have been days when I fled off of an elevator when a pregnant woman stepped on, because I had miscarried Lillian a few weeks prior and lost Katie a few months before that. I've had to run out of a parent-teacher conference before, barely making into one of the guidance counselor's offices before bawling my eyes out because there was a little baby girl present at the meeting. There were days when Jason Grey's song Remind Me Who I Am would come on the radio and I would beg God to remind me who I was to Him. To make me believe that I was His beloved because I literally did not have the strength to get through what was happening. God was there with me those days. He got me through them. He was my strength and my comforter. And each day was a little better. I felt joy again, even though it seemed impossible at the time. My memories of my lost babies have evolved over time. They are now bitter-sweet instead of purely painful. I can remember them with joy mixed in with the sadness. And I know that as time goes by, it will get better still. I will never be healed (at least not in this life), but am constantly healing.

The pain that we as parents of heavenly children feel when we are separated from our lost little ones also comes from having been made in God's image. It is the same pain that God felt when Jesus was on the cross and He was separated from His own child for a time. It is the pain that God feels when He is separated from us. It is why God allowed His own son to die so that we could choose to be reconciled to Him. It is why God wants to adopt us as His own children.

Remind Me Who I Am

Thursday, January 14, 2016

What Not To Say To Someone Experiencing Grief - Part Two

   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.

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.

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:
I Couldn't Love You More  -     By: Matt Hammitt, Jason Ingram
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.

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.
  • 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/27/8/981
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