Footprints in the Sand

The poem ‘Footprints in the Sand’ has gotten me through some dark moments in life. My sister once visited Jerusalem and brought back a scroll with the poem printed on it. This scroll has always hung in my bedroom. After our journey with Eli started, I realized I needed to be reminded that God was carrying me – so, I moved it to the bathroom where I get ready each day. For those that may be unfamiliar with it, here’s the poem:

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one only.
This bothered me because I noticed that during the low periods of my life,
when I was suffering from anguish,
sorrow or defeat,
I could see only one set of footprints,
so I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there has only been one set of footprints in the sand.
Why, when I needed you most, have you not been there for me?”
The Lord replied,
“The years when you have seen only one set of footprints,
my child, is when I carried you.”

Written by Mary Stevenson

As you may know, I have struggled to keep the faith during this time of fear and the unknown but something always happens that brings me back around. I found this cartoon the other day and it made me laugh as I imagine this is what God may be saying to me. ☺

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Disillusioned

Sometimes life just isn’t fair. After the tentative joy we felt after receiving some “good” news at the last ultrasound (the possibility that Eli had no heart defect) today we are feeling the exact opposite. We were told that Eli does have a small hole in his heart and something called Tetralogy of Fallot. As I do not completely understand what this defect is (yet) I have pulled some information from the Mayo Clinic website (www.mayoclinic.com):
The four abnormalities that make up the tetralogy of Fallot include:

Pulmonary valve stenosis: This is a narrowing of the pulmonary valve, the flap that separates the right ventricle of the heart from the pulmonary artery, the main blood vessel leading to the lungs. Constriction of the pulmonary valve reduces blood flow to the lungs. The narrowing may also affect the muscle beneath the pulmonary valve.

Ventricular septal defect: This is a hole in the wall that separates the two lower chambers (ventricles) of the heart. The hole allows deoxygenated blood in the right ventricle — blood that has circulated through the body and is en route to the lungs to replenish its oxygen supply — to flow into the left ventricle and mix with oxygenated blood fresh from the lungs. Blood from the left ventricle also flows back to the right ventricle in an inefficient manner. This ability for blood to flow through the ventricular septal defect dilutes the supply of oxygenated blood to the body and eventually can weaken the heart.

Overriding aorta:
Normally the aorta, the main artery leading out to the body, branches off the left ventricle. In tetralogy of Fallot, the aorta is shifted slightly to the right and lies directly above the ventricular septal defect. In this position the aorta receives blood from both the right and left ventricles, mixing the oxygen-poor blood from the right ventricle with the oxygen-rich blood from the left ventricle.

Right ventricular hypertrophy:
When the heart’s pumping action is overworked, it causes the muscular wall of the right ventricle to enlarge and thicken. Over time this may cause the heart to stiffen, become weak and eventually fail.

What does this all mean? Honestly, I’m not sure. This is still very, very new information that I’m trying to digest. Tomorrow I should get a call from the pediatric cardiology department at Children’s Hospital in Seattle to schedule an appointment. That appointment will focus on the echocardiogram (ultrasound of the heart) and should provide us with some answers as to what all this means. As it turns out, the cardiologist that our ultrasound doctor referred happens to be one of Chuck’s customers. Small world.

Our emotions are very raw today. We are once again asking, ‘why us?’, ‘why Eli?’. He didn’t do anything to deserve the challenges he’ll face in his young life. Either did we. My faith has wavered a bit again. I don’t understand why God doesn’t answer our prayers. I know He must have a different plan for us and baby Eli but, for once, I was hoping we’d be on the same page. I am angry. Our hearts have carried a heavy burden since this journey started. I sometimes wish we had a rewind button and could start all over. I’d also settle for the pause button. But, as we’ve been shown, life is not that easy. It’s not a horror movie. You can’t fast forward through the gory stuff. In real life you fight like hell to just get through it. And we will. Eli will. I know it. In this I do have faith.

The love and support we’ve received from family, friends, and strangers has been overwhelming and humbling. I am so very grateful to those that have prayed for us, thought about us, laughed with us, and cried with us. Thank you from the bottom of my heart for loving us and most of all, for loving Eli.
xoxo

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Having faith

The day we received the news that we had a 1 in 3 chance of our baby having Down syndrome we went to see a genetic counselor. On the way home, we passed a small country church. On the sign of the church is a small reader board that they change with different quotes, bibles verses, or community events. On that particular day, the quote spoke directly to us and our situation. It said, ‘FAITH: Confident in hope and certainty in the unseen.’ Those words got us through the endless wait to find out the results of the blood test. Back then, I took it to mean that if we just had faith our baby would be ok. Eight days later, on the way home from the appointment where we discussed the phone call that confirmed we were the 1 in 3, I saw the quote and burst into tears. Were we not filled with enough faith? Didn’t we have plenty of hope? Was this our fault?

I passed that sign the other day coming home from the park with Cody. Two and a half months later it is still the same quote on the reader board. This time, I looked at it and smiled. We do have enough faith and we are ‘confident in hope’. That is why Eli was chosen for us. That quote speaks more to me today then it did then. We have ‘certainty in the unseen’. We are certain for our love for our child and we have faith in our future as a family.

No Judgement

Please don’t judge me. I have been sent on a journey that I pray others will never have to go on (but I know some will).

Something this experience has taught me is to judge less. I’ve always been a pretty judgmental person. Although, in talking to others, I’ve realized most people tend to be pretty judgmental too. I guess that’s just the way society is. I’m hoping to change and live my life in a less judgmental, more accepting way from this point forward.

When we first started the process for prenatal testing we honestly did it just to get the better ultrasound to find out the gender (you do all the prenatal testing at a specialist office that has fancier ultrasound equipment). At our first ultrasound appointment with Dr. Case (our amazing Radiologist) he mentioned that our baby’s nuchal translucency fold at the back of his/her neck (we didn’t know he was a he yet) was measuring “a little high but not out of the normal range” (it was 2.6 – up to 3.0 is considered “normal”). That put my odds of having a baby with Down Syndrome at 1 in 220. He said they’ll know more after the blood work but that he was sure it was fine. We mentioned that it didn’t matter to us either way as we’d keep our baby regardless.

Fast forward a week or two (at this point, timeframes are a bit of a blur) to May 1. We received a call from the genetic counselor saying that the blood work came back abnormal and that the odds of our baby having Down Syndrome were now 1 in 3! Um, what?!?! I didn’t expect to hear that. I was hysterical. Chuck came home from work and we made an appointment with the genetic counselor right away. She informed us that 90% of Down syndrome pregnancies end in medical termination. 90%?!?! What?! I honestly didn’t think it’d be that high. We stated that we would not be choosing that path but then again we did not have a positive diagnosis as of yet.

We wanted the opportunity to prepare if our child did in fact have Down syndrome, so we opted for further testing. We decided to do the new MaterniT21 blood test. It’s a less invasive alternative to an amniocentesis with the same accuracy. We waited 8 very long days for the phone call from the genetic counselor telling us the test was positive. We set a meeting with her for the next day so we’d have a day to process the positive results. I honestly don’t remember what we discussed at that appointment besides the “decision we were facing”. I wish I could say that we were still as adamant about loving and keeping our baby regardless of diagnosis but as you may have read in the previous post, we were devastated and grief stricken. I was hung up on that 90% number. I asked every doctor we met with why it was such a high number. Each had different answers. One said it was based on geographic location. Another said it was based on ethnicity. One said it wasn’t that high, maybe only 60%. Honestly, I don’t think the study that put out that 90% number is very accurate, but I personally haven’t taken any polls.

My point in all of this rambling is that you cannot, and should not, make judgements unless you’ve walked in someone’s shoes. The decision to keep our baby was the hardest decision I hope we ever have to make (but I’m guessing it won’t be the last of hard decisions we will have to make). We had to think about the quality of life for our baby, for our older son, for our family as a whole. We had to think of the financial aspects and whether or not we were emotionally capable of caring for a child with special needs. Our choice was one in the minority. We know this child was sent to us because, even if we don’t have faith in ourselves, God has faith in us. We have accepted the challenge, but many people do not. And regardless of your stance on abortion (pro choice or pro life) those people should not be judged or looked down upon. Just like we shouldn’t be celebrated for choosing the opposite. For parents, who are in the midst of a planned and wanted pregnancy, having to make a decision like this is cruel and unfair. We spent many sleepless nights wondering, thinking, worrying, debating – as I’m sure most parents who are faced with the same decision do. Many people know right away what they’ll do. Many people think they know what they’ll do. We knew, but we had to go to the depth of our souls for confirmation.

We are grateful for our little boy, extra chromosome and all. We can care for our son and provide for him. We know that our family will be whole with him. Will we face challenges? Most definitely. But we will face those challenges the same way we’ve faced other challenges in our lives – together.