Tuesday, September 27, 2011
Ezra James Jarmer
Tuesday, September 20, 2011
Leah's Baby Brother
Leah is a big sister! We are expecting her little brother on January 24th, 2012, and we can't wait to meet him! His life has been such a blessing, and has filled us all with hope. His pregnancy, however has been such a difficult one physically for mom, but I am doing my best to make it through each new day - just taking it one long, sick day at a time.
Being pregnant after Leah has also been so much harder emotionally than I expected. It is something that has taken all the courage I have, and yet I know now that I am not courageous enough in my own strength to face the unknown. In facing a future pregnancy, my heart has had to come to peace with accepting that this new baby may or may not be healthy. I am not only open to having a healthy baby, but rather the exact baby which God has in store for us. This alone was a very long, emotional journey to undertake, and arrive at a place of saying, even though I would NEVER want to walk down this same road again, I am willing to surrender my desires and plans for my life before the Lord. I know that any belief that I am in some sort of control over preventing HPE from ever touching my life again, possibly through choosing to never get pregnant again is simply false. For when God creates a life, He doesn't need our permission or for us to feel "ready" for that new life. If I were to choose to avoid a future pregnancy though it could potentially cause more pain and sorrow, I realized that I would also be avoiding the joy that existed alongside Leah's beautiful life. For her life was full of an intense purpose that was undeniable - full of a closeness to God that I had never experienced before - full of complete dependence upon God for her each and every breath. Her life was a season when I can look back and feel that our family was truly focused, without distraction, upon glorifying God. Her life is like a precious jewel in my spiritual journey of knowing, serving and obeying God.
We were told that there was between a 5 - 50% chance of a future pregnancy resulting in a HPE diagnosis with a similar severity to that of Leah's. I knew to expect it to be "hard", but what I didn't expect is how that would affect my ability to even as much as picture having this new baby arriving in January. That is because most pregnant women are full of an ignorantly blissful expectation that their child will be healthy. Yet, my world has been filled these past few years with so many babies who never made it to their parent's arms, never took a breath, and like our Leah, didn't get to stay. I have gotten to know so many families, who after having a baby like Leah, get their genetic test results that look normal, like Leah's did, and yet they have a subsequent pregnancy with the same fatal condition, even when doctors told them it was very unlikely. You see, HPE is such a rare condition, that there is MUCH more research needed to discover the likely dozens of additional genes that as of today are not being tested for. Hence, the 5 - 50% range, given to parents like us even after the 4 genes they tested looked totally normal. Doctors know they have only found the tip of the iceberg in terms of predicting the genetic factors related to HPE. Those were HUGE odds to be facing when considering a subsequent pregnancy. They are in fact, simply terrifying!
For how do you live with your heart desperately yearning with hope for a healthy baby, placed side by side with the new reality of just how many precious babies go to Heaven? The truth is that after losing a baby, you simply cannot expect that this new life will make it to your arms alive, even though you know that it still COULD, there is such a reality of knowing that it's not a given. This never caused me to feel like I was putting my love or attachment on hold, but it rather caused me to feel like I am full of love for this child and I am holding my breath, knowing that tomorrow has not yet been promised. In truth, that is how I feel each and every day in light of my loved ones, after experiencing that Leah was never meant to have 100 days in my arms, but rather she went to Heaven on her 99th day of life. Yet, I didn't know that her 100th day wasn't going to come to pass......so I lived each day full of love and grattitude for it was a precious gift.
Leah has been a huge part of our family, even over these past 2 years since she went to Heaven. And I guess it's not surprising then to share that she has been an even bigger part of this pregnancy for me. It's not that we haven't let her go, for truly we have. It's just the reality that our love for her remains, it has only grown over these past few years, and we are still so thankful that God brought her to our family. Just as we are thankful for Kyla's life, and for the life of our new baby boy. Being pregnant again reminds me so much of my pregnancy of carrying Leah within me. Even though this is my third time feeling a new baby kick, it still feels so miraculous to realize that there is a new little person living within my body! It blows my mind, STILL!
Kyla is so very excited for our new baby to be born. Her prayers the night of our 20 week ultrasound said, "Dear God, Thank you for my baby brother, and thank you that his brain is not sick, and I pray that he gets to stay. Amen." We are all praying that this little boy "gets to stay", as we live with the full reality that God doesn't owe us anything in regards to that. Yet, every parent wants their child to get to stay, be healthy and happy and full of potential for their future.
We look forward to holding our new baby boy in our arms, and we do not take a single day of his life for granted! He has been with us for 5 1/2 months now, and we love him so deeply!
Being pregnant after Leah has also been so much harder emotionally than I expected. It is something that has taken all the courage I have, and yet I know now that I am not courageous enough in my own strength to face the unknown. In facing a future pregnancy, my heart has had to come to peace with accepting that this new baby may or may not be healthy. I am not only open to having a healthy baby, but rather the exact baby which God has in store for us. This alone was a very long, emotional journey to undertake, and arrive at a place of saying, even though I would NEVER want to walk down this same road again, I am willing to surrender my desires and plans for my life before the Lord. I know that any belief that I am in some sort of control over preventing HPE from ever touching my life again, possibly through choosing to never get pregnant again is simply false. For when God creates a life, He doesn't need our permission or for us to feel "ready" for that new life. If I were to choose to avoid a future pregnancy though it could potentially cause more pain and sorrow, I realized that I would also be avoiding the joy that existed alongside Leah's beautiful life. For her life was full of an intense purpose that was undeniable - full of a closeness to God that I had never experienced before - full of complete dependence upon God for her each and every breath. Her life was a season when I can look back and feel that our family was truly focused, without distraction, upon glorifying God. Her life is like a precious jewel in my spiritual journey of knowing, serving and obeying God.
We were told that there was between a 5 - 50% chance of a future pregnancy resulting in a HPE diagnosis with a similar severity to that of Leah's. I knew to expect it to be "hard", but what I didn't expect is how that would affect my ability to even as much as picture having this new baby arriving in January. That is because most pregnant women are full of an ignorantly blissful expectation that their child will be healthy. Yet, my world has been filled these past few years with so many babies who never made it to their parent's arms, never took a breath, and like our Leah, didn't get to stay. I have gotten to know so many families, who after having a baby like Leah, get their genetic test results that look normal, like Leah's did, and yet they have a subsequent pregnancy with the same fatal condition, even when doctors told them it was very unlikely. You see, HPE is such a rare condition, that there is MUCH more research needed to discover the likely dozens of additional genes that as of today are not being tested for. Hence, the 5 - 50% range, given to parents like us even after the 4 genes they tested looked totally normal. Doctors know they have only found the tip of the iceberg in terms of predicting the genetic factors related to HPE. Those were HUGE odds to be facing when considering a subsequent pregnancy. They are in fact, simply terrifying!
For how do you live with your heart desperately yearning with hope for a healthy baby, placed side by side with the new reality of just how many precious babies go to Heaven? The truth is that after losing a baby, you simply cannot expect that this new life will make it to your arms alive, even though you know that it still COULD, there is such a reality of knowing that it's not a given. This never caused me to feel like I was putting my love or attachment on hold, but it rather caused me to feel like I am full of love for this child and I am holding my breath, knowing that tomorrow has not yet been promised. In truth, that is how I feel each and every day in light of my loved ones, after experiencing that Leah was never meant to have 100 days in my arms, but rather she went to Heaven on her 99th day of life. Yet, I didn't know that her 100th day wasn't going to come to pass......so I lived each day full of love and grattitude for it was a precious gift.
Leah has been a huge part of our family, even over these past 2 years since she went to Heaven. And I guess it's not surprising then to share that she has been an even bigger part of this pregnancy for me. It's not that we haven't let her go, for truly we have. It's just the reality that our love for her remains, it has only grown over these past few years, and we are still so thankful that God brought her to our family. Just as we are thankful for Kyla's life, and for the life of our new baby boy. Being pregnant again reminds me so much of my pregnancy of carrying Leah within me. Even though this is my third time feeling a new baby kick, it still feels so miraculous to realize that there is a new little person living within my body! It blows my mind, STILL!
Kyla is so very excited for our new baby to be born. Her prayers the night of our 20 week ultrasound said, "Dear God, Thank you for my baby brother, and thank you that his brain is not sick, and I pray that he gets to stay. Amen." We are all praying that this little boy "gets to stay", as we live with the full reality that God doesn't owe us anything in regards to that. Yet, every parent wants their child to get to stay, be healthy and happy and full of potential for their future.
We look forward to holding our new baby boy in our arms, and we do not take a single day of his life for granted! He has been with us for 5 1/2 months now, and we love him so deeply!
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