Breath of Fresh Air

You will go out in Joy 

and be led forth in peace;

The mountains and hills

will burst into song before you

and all the trees of the field

will clap their hands.

Isaiah 55:12

This verse is our MOPS theme verse for this upcoming year and I've been trying my best to memorize it in preparation. My kids love that they get to quiz me on memory work, instead of the other way around! This verse pretty much sums up what I felt today when receiving our great news! Right after receiving our wonderful news I met up with some MOPS moms at a beautiful park to talk about our summer book study. It was wonderful to think about this verse out on a beautiful day for August in Kansas...at a park full of trees, water, and ducks (there were no mountains but there were a few hills.) It's amazing what fresh air and good news can do to revive my attitude and outlook!

                                               
                                                                                               

The hoped for\feared call came this morning when I was in the midst of doing some housework and I had left my phone on vibrate from the night before and missed a call from Children's Mercy. The genetics counselor being extremely ready to share some positive news, for once, emailed Mark to tell him to have me call back as soon as possible and that she had good news. I called back a little before 9 am and heard the words we hoped to hear: the test did not detect any anomalies and everything looked normal! I was so happy and uplifted that things are looking "normal."

Normal is a word I longed to feel all through my life, and normal is something I still search desperately for on most days. I have to laugh that I expect God to make us all into cookie cutter creations. How boring would it be if I were actually normal, but some days I'd settle for boring over pain. My normal is always a little different from others during pregnancy. Yes it's normal for me to have two hours of random contractions, at only 12 weeks along, that are consistent and then completely drop off (I usually don't even call the doctor until after 5 hours because that's how my body rolls). It's normal for me to need to take multiple sitting breaks throughout the day to stave off pain. It's normal for me to need more help than I'd like to admit. However I'm so thankful to add baby looking normal to the mix this time around.

Gideon is definitely included in the new normal in many ways. Different things will bring him to mind and we allow our children to talk openly about him. It's normal to me to see a mom at a school gathering who's children almost identically line up to mine age wise including their fourth, a baby around the age Gideon would be....my mind began to think Gideon would have been going to Kindergarten with their youngest down the road had things gone differently. It's normal for Olivia to look at Gideon's picture and turn to me and say, "mommy he was so cute!" It's our new normal to pause when filling out a getting to know you quiz for school when reaching a question about how many brothers and sisters Will has. I loved that he was extremely thorough and was careful to keep Gideon in the mix.

All these little moments make my heart go out to all the parents and siblings that have children and siblings no longer on Earth but very much alive in their hearts and Heaven. Innocent quizzes can turn into a moment of sadness or indecision about how much to let others into that part of your life. I'm proud of my big kids that they will always include Gideon in the mix no matter what others may think. Numbering my children will always be a struggle and I will include them all if people ask. However, just looking at our family on outings their is the assumption that we have only three kids or a party of 5, but in my heart I want to scream party of 6. I'm thankful we got to have time with Gideon and I'm thankful he's waiting to reunite with us some day down the road. I'm thankful that we have this rainbow baby coming along to join our party, thanks to the help of modern medicine Mark and I can breath a little easier and plan a little more! Can't wait to meet our sweet little one in February!

Returning

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Joshua 1:9 

This verse is one of my favorites as I am a very anxious person, especially about new journeys riddled with potential problems. This verse comes after Moses has died and it falls to Joshua to lead God's people into the promised land. How daunting that must have felt to Joshua. I feel like this new little one is coming after a long stay in the desert for our family. Instead of shrinking from all the potential issues facing baby, such as genetic anomalies, or myself with pain and in the potential future- contractions, I need to stay strong and remember who paves our path. God will guide us and stay with us

Today Mark and I returned to the office where we first received our Gideon's diagnosis. So many emotions are packed into those drives downtown to the Children's Mercy Fetal Health Center. I remember the route and the lingering feelings- what else are we going to learn about Gideon today? How will I be able to drive back home while feeling hazy from the impact of information. So when we made our appointment for today I semi-feared the visit.

God set up the timing of this visit beautifully as I celebrated 25 years cancer free just two days prior. I couldn't help thinking about that very different journey on my way to the appointment today. I passed Rainbow Blvd (the street KU Med is located on) and in my head I said "nanny nanny poo poo I don't have to see you."-the same phrase we'd scream at the street/exit if we were passing it on a trip or on our way to a fun outing when I was a kid. How wonderful that now I can look so far back on that time in my life and remember but no longer fear for the future. I know in my heart that we will never forget Gideon but we become more and more acclimated to life while still missing him. However sometimes the vivid memories of Gideon are triggered.

When we first got to the appointment-technically Mark was right on time- I was a bit late since I didn't accurately judge the amount of time I needed to get there, park, and get through security. The genetic counselor met with us to begin our appointment. She chatted with us a little about the fact that this baby is only a day off from Gideon's due date. Then she began by asking us to catch her up by going over all that had gone on with Gideon since we last saw them in December. It caught me off guard that I'd be rehashing everything with Gideon. My mind had been on moving forward with this pregnancy and not about Gideon in regards to this particular appointment.

We told her how because of Gideon's size and the amount of amniotic fluid I was carrying that labor lasted much longer than expected. That Gideon was able to dodge the contractions by swimming away whenever they hit me. That our doctor intended to create a slow leak but it came out like a flood. How he was born quietly without breathing but had a faint heart beat for a short period of time but we got the time we wanted with him-however that time will never be enough for us.

I wanted to know how much to hang my hopes on this blood test and our overall chances so I asked if she knew the official stats on it.-Mark thought it was funny that the non-math person was wanting the numbers. In this instance numbers help me to gauge how to react to whatever results we receive back. Basically it works out that we can rest easy with a negative on any of the results coming up, which is our best case scenario anyway. But if we receive a positive for Trisomy 18 there is only an 18% chance of baby actually having Trisomy 18-so a positive is not for sure! (On the off chance that baby does show up positive we can do an amniocentesis in 2 more weeks following the results) Also we learned that the gender predictions are not absolutely correct either-so that killed my plan to do some consignment sale shopping for baby beyond gender neutral things.

For anyone wondering, even 25 years after remission or 22 years after chemotherapy ended, my veins are still shot. The nurse brought in the equipment to draw my blood and I immediately noticed that they were not using a normal butterfly needle but the needle they use to start IVs. The nurse said that apparently if you use too small of a needle to draw it, it can distort the DNA and we would have to repeat the whole appointment again in 2 weeks. It took a couple tries and two nurses to find a good vein, but they got all the blood they needed to send away. The lab will be looking at my blood because some of baby's DNA is mixed in with mine, so they will not separate our DNA but look at the copies together to see if there are any anomalies. As a former biology geek I'm in awe of how much technology has advanced to help ease the minds of mothers and fathers who have been through what we have been,

So our results for the test will not come back in for another 2 weeks. Thankfully these next two weeks are pretty jam packed with things to keep me busy including getting Will and Olivia ready for the first day of school. We also have Luke's 3rd birthday approaching as well. Even a fun double date to see Jim Gaffigan live!

I felt all the prayers from those covering us today. I was much more at peace than I expected and even when rehashing Gideon's birth and death I didn't get as chocked up about it as I normally do. I know God is in it with us for the long haul. No matter the results we will continue to walk with Him and continue to praise His name.

An old but good worship song came on the radio as I was taking the kids to visit some friends to hang out and swim while I was to go with Mark to the appointment. Certain lyrics really stand out to me at the intersection of my 25 years of remission and 6 months (on the 31st) without our little boy.

From the song Blessed be your name by Matt Redman:

Blessed be Your name

When the sun's shining down on me

When the world's all as it should be

Blessed be Your name

Blessed be Your name

On the road marked with suffering

Though there's pain in the offering

Blessed be Your name

Every blessing You pour out

I'll turn back to praise

And when the darkness closes in, Lord

Still I will say

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

Rediscovering Abundant Life

"The Thief comes only to steal, kill, and destroy; 

I have come that they may have life, and have it abundantly."

John 10:10

Today was my second check up for our new little one. The last couple weeks have been challenging for me emotionally speaking. I had myself convinced that something terrible had happened and that we wouldn't get to hear baby's heartbeat and I'll be all alone crying. These were how my dreams played out while I slept fitfully every night for the last few weeks. Of course some of my dreams had weird dreamy aspects but they all played out in the end with the feeling of abandonment, or my desperately searching for something that was lost or about to be lost. I think some of it must have been spiritual warfare because of my mood for the last 2 weeks was off but I couldn't pin down an actual cause to my feelings. I know when I get too wrapped up in the worry I forget God's goodness. I forget how much God has pulled us through and I underestimate how much God could still pull us through.

A couple weeks ago my daughter Olivia was casually playing outside with her younger brother Luke. Olivia and Luke were pushing strollers with dolls in them and they mentioned that they were practicing for baby. Then she said "I really hope we get to take this baby home." I simply replied I hope so too.

I have not been imagining too far out into the future at this point. I have been living from appointment to appointment and not looking too far ahead for fear that I would raise my hopes too high, that I would get high expectations that could come crashing down.  I see myself rationing out my joy, I only allow myself so much happy or so much planning at a time until I reach that 20 week mark-the place where we found out all that was wrong with Gideon-the place where I feel I will breath a bit more in this pregnancy.

Today's check up was both good and scary. I have had many nightmares of the baby having no heart beat at this appointment. I got to my appointment and the waiting room was eerily empty. I got taken back much sooner than normal. My doctor walked in with the dopplar and set to work trying to track the baby down. My worse nightmare seemed to be coming true in those very quiet minutes. We couldn't pick up a heartbeat on the dopplar. She saw the all too familiar look on my face of pure fear. She assured me that it was probably just an issue of not being far enough along and sent me to get an ultrasound. I was alone on this appointment so I quickly texted the situation to Mark and told him I'd update him after the ultrasound. Thankfully the tech was able to track down baby and a very strong heart beat of 165. My heart and mind settled as I watched our little one wiggling around and even moving his or her arms around.

Something about seeing the baby moving around this time made it all a bit more real, a bit more reassuring. I was reminded that I need to bring back the joy once again and live freely as God would want his daughter to live. Just yesterday I let the kids and I imagine a little about baby. It felt surprisingly good to allow the ideas of the possible future float around and drown out the fear. The kids talked about places we could take the baby on walks and who wanted to push baby in a stroller.

Little by little I feel some dark clouds roll away and I can see the sun a bit more! I struggle with the worry and concern because I already love this baby so much. However I want to take the advice Paul gives to the Philippians!

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-If anything is excellent or praiseworthy-think about such things."

Philippians 4:8

I can do away with fears of the future by focusing on the truth that God loves me. That he is for me and not against me. God has placed my husband in my life to keep my mind grounded when I start to drift to all the what ifs. God has placed many friends and family that are joining us in praying for this baby and our family. God is good all the time!

Will threw Mark and I a "Happy Party" to try to cheer me up last week

Luke came up to me holding a baby doll and said "I a daddy"

Joy and Sorrow

He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.

Ecclesiastes 3:11

The month of July seems to be a month full of happy and sad anniversaries in our families. It was a month that my parents (July 12th 1980) and sister in law and brother in law (July 8 2006) were married in. The month that my mother (July 15th), sister Maya (July 14th), and sister Faith (July 25) were born in. It's also the month that I was declared cancer free-put into remission (July 26th 1990) even though I would still go on to do a total of 3 years of chemo. July is also a month full of not so happy memories.

July 3rd 1990 was one of those days that is burned into both my and my parents memory as it was the day I received my diagnosis of Acute Lymphoblastic Leukemia. I'm not sure back on that day that my parents were given much hope that 25 years later I'd still be alive, even married with children of my own. The time period between the 3rd and the 26th must of felt like a life time as we tried to take it all a day at a time amidst blood draws, spinal taps, bone marrow biopsies, and nasty IV chemo.

July 12th 1999 was another day that will always be remembered in my family as the day that my baby sister Faith passed away. I know you will notice the overlap in dates of my parent's anniversary and her death. She was also 2 weeks shy of her first Birthday and we ended up throwing a birthday party for her before she left us for Heaven. However her memory was one of the things that helped me get through the many appointments concerning Gideon and his heart with the Children's Mercy doctors.

It's amazing to me how so much joy and sorrow can often coexist. I'm trying to remember this right now as we are still in the first trimester of this new pregnancy. There are days where I'm afraid I started this pregnancy too soon and something bad is going to happen between visits. I also still get sad at how it seems so long ago since Gideon passed, but in reality it wasn't even 6 months ago.

Also my pain has started back up once again. This time I was just shy of 8 weeks when it kicked in-part of me hopes that means we are having a girl since it started super early with my pregnancy with Olivia as well! Another part of me is sad that I'm already counting down the weeks I will remain in pain-approxiamatley 32 more to go. Right now the pain is only annoying/nagging so it doesn't seem as daunting if the pain remains at this level. However I know my body and as baby grows, so will the pain.

Once the pain kicked in I began having flashbacks to my visit with the my OB last September, the same day we had the heartbreaking level 2 scan with Gideon. I remember saying over and over in her office in between tears..."I promise I won't complain about the pain as long as I get to hold my baby!" I want to enjoy this pregnancy that has so far been fairly normal. I want to remember how blessed we are that we got pregnant in the first place. How God timed this for us to bring about healing for us and our family. How we see God completing our family. Mark and I shared the same vision of one day having 4-5 children, a house full of laughter, and down the road large family gatherings of multiple generations. So I'm trying to look at the pain through God's eyes as a reminder that baby is growing, since I know for me that is what causes the pain, and soak in the normalcy for however long that holds.

I know this world is not perfect and our bodies are not perfect on Earth. Maybe if I were not in pain I would not have the longing to reach out to God half as much as I do. I feel my need for him in a desperate way when I wake up in the morning in pain. I feel my strong need for him when pregnancy has drained the little energy I had in the first place, and I have 3 children to be present for. I feel my need for him when I have zero appetite, but I know if I don't eat I'm destined for seizures. He is walking by my side daily and he will carry me through yet again. This 32 week walk is much longer than the 23 days we waited for the word remission to be uttered from the doctors lips in 1990. At the same time it is a much shorter time than the three years of chemo I walked through as a small child.

Our next appointment is on July 21st and I'm praying for happy news and a strong heart beat that can be heard on the dopplar. That week is also full of  good plans for our family. On the 23rd we send our eldest off on his first ever overnight church camp trip. That same day is the school registration to get my two big kids, especially Olivia entering Kindergarten, ready for the next school year. And the next day I head off for a MOPS leadership retreat.

Of course as I was typing this post I got a call that kind of took me off guard. We had planned to run a blood panel that predicts potential genetic issues and chat with the doctors at the fetal health center at Children's Mercy Hospital as part of my care this time around. This is the same group that we dealt with concerning all of Gideon's health issues. It took me by surprise even though we planned it all with my regular doctor and my doctor's office was planning to touch base with fetal health on our behalf. When the call happened and even as I was chatting back and forth with a familiar voice, the fear crept in. The idea of going back to that same office in some ways makes me feel a little uneasy. So many hard talks and tears happened there. I'm praying come July 28th everything will be more positive and we will walk out of that office smiling. Also, that as we wait for results from that test, I can maintain my peace.

I know I can keep hope alive as long as my hope is set on what it always should be set on- God. There is no way to predict the future and the devil would love nothing more for me to be stuck thinking and dwelling on every fear I have. However God wants abundant life for me and my family even amidst pain. So I have to reset my focus daily and not let my focus stray to how something could go wrong... or my longing for a painless "normal" pregnancy. God has blessed us and God will continue to bless us as long as my gaze remains fixed on the true hope he offers. The hope of eternal life, and the hope that we are never alone as we walk through life's battles.

May the God of Hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Romans 15:13