Thursday, May 28, 2009

The many roads of my heart and how they all lead back...

It is amazing how in just a moment of humility, my eyes can be lifted and my heart feels lighter in the midst of challenge coming everyday. I am thankful for that. I feel refreshed as Mike and I finished a weekend together, having a husband is a reward that I have felt guilty for needing, yet I know that in this season more than ever I need his support in every moment of the day to day and I realized that is right.

On the note of Mike moving in potentially with us, it has been moving forward on the paperwork side of things. These are emotional times, because as usual I have to deal with Dr.'s and their protocall and the in-betweens, in these moments it is just trying to clearly explain what I need and hoping and praying that it is enough to move the right people to make the best decision for us as a family. The truth in all of this that I cling to is that God is ultimately in control. I have faced more challenges this week emotionally with this Truth.

I met a Mom at the pool the other day and she has 2 children and is a labor and delivery nurse and when we got to talking and I told her about the baby, she had some thoughts that were challenging and caused me to re-evaluate what I KNOW to be Truth. You see in the medical field and actually most people would ask why I would want to continue on with this pregnancy as Phoenix and we will face many challenges on all levels if he is not healed.

She said," do you know how hard this baby's life will be? and your life will be?"

I replied, "yes, I know it will be challenging."

That is all I could muster at this moment, because I never faced a question that directly, only the underlying implications that the decision I was making was wrong or selfish. These are hard thoughts for some, but loads of people think this way toward a life that is not "optimal quality".
When I got back to the apartment I lost it, thinking about what have we come to that we have the ability and control to decide who has the right to live and who doesn't and what an "optimal" life looks like... I believe and stand on that God knit this baby together and there is a purpose and destiny on his life even if it is full of challenge, which of course would break any Mother's heart to know the challenge of just "being different" than all the other kids. It is a mystery to the Doctors why my body continues to grow and nurture babies with these birth defects, when it is a mystery to a dr. I see the fingerprint of God even more clearly.

So many times this week Mike and I have faced the thoughts of the road ahead, we know that God will give to us the Grace we need to face whatever is ahead, yet more than ever we have been pleading with God to heal and restore Phoenix' body. Often times in our heart we feel more prepared for God changing our minds to see as he sees and that this child is Beautiful and Perfect to him in whatever we perceive as lack, amazing how different we see.

Well that is a nutshell of what these days have looked like. I have an appointment next thursday, a level 2 ultrasound which is pretty much routine for me, please pray that the Dr. would be compassionate and respectful of all that we desire for this baby. I am hoping that questions will be answered and the path ahead be clearer. This will be my first meeting with our Doctor and I must admit I am a bit nervous about the whole thing...

On the front of feeling settled and less whirlwindish, I feel encouraged and strong for the Roads ahead and am believing that it can only get better and hopefully a little less bumpy roads.

Love to all and I will update soon I am sure.
Thursday, May 14, 2009

A day of many fights...

Today I woke up and felt encouraged, like I could face this day without heartache, and maybe feel strong in my Faith and less overwhelmed by the mountain in front of me. Yet by this evening I felt overwhelmed with emotion and no persective hope for the days to come. Each day is seriously a dark battle in a ton of ways, I know that so much of this time is emotional for very many reasons. I miss my friends and family, tomorrow is full of unknowns, my husband and I live apart and see eachother an hr or so a day and oh yes, I am 7 and 1/2 mo. pregnant and my hormones and energy levels get the best of me and my heart full of emotions. These are times when it is hard to believe that I am STANDING, because I feel like I am falling into some deep abyss, yet in the simplicity that My Mom is she said, "He promises that in our weakness, He is STRONG. All you have to do Megan is lean into Him." Amazing how simple and richly true this is, yet how impossible in moments it feels, am I doing that, or am I depending on myself to get through a day. Cause if I am leaning on him and deriving my strength from him them why am a mess eachday and why does it feel like I barely made it through.

As I write this in my heart I know that the TRUTH is there are seasons that we are leaning but they look and feel so Messy and like we are just getting through, barely. It is these seasons that we feel the most known by God and ourselves, the deep recess' come out of hiding and the stripping of all that we cling to fades away. There is only one to cling to, He is never changing and never ceasing to love and carry us, even if we "feel" he is far away.

This is why I write because, it sets me strong in my love and strength in God.

Ok, so on a practicl level. We need your prayers, Mike is going to talk with the "higher ups" today to see if we can get the process of him moving in with us moving forward. Now the military moves at a snails pace and I am trying to Trust God and His timing in this but have reached a point in my day to day where physically and emotionally, I need help from Mike, Rowan is busy and heavy and my body is at trimester three which means exhaustion sets in around dinner time everyday. If Mike gets approved, which is a very BIG exception in the army, but we are believing that this is going to happen, he will be home every night by 5:30 and home for the weekends. At this point we get to see him about everyother night for about 2 hours, in which Rowan and I go to base and drive around with him or go to there local eating area and get a snack. It is too hot to be outside, Mike has to be in full uniform which includes a wool baree' and there is no formal sitting area in his dorm , he is not allowed off base yet. Weekends are no exception.

All of that to say, please pray for favor and supernatural speediness, these rare things do happen in our life and we really need to see some miracles for our hearts sake. Also, My Mom is here and we are going to be finding furniture and organizing my apartment as well as hoping to get all this Dr. stuff squared away. By the way I found out yesterday it is quite a tedious process. I will have to be working with 3 Dr. from here on out in the pregnancy, an Ob/gyn, a perinatoligist (specialist in maternal fetal medicine), and a Neurologist ( the surgeon that will develop a plan for the baby after delivery), now this is a complicated process, to find three that work together at a LEVEL 3 hospital, that will take a 7mo. pregnancy on, as I am a huge liability to them and that takes our insurance. I have had some great help in this area, thank God and am hoping to set up appointments and get the ball rolling here soon. But please pray for Favor here and connection with these Dr. that they would be a team I feel safe with and can Trust. Also, begin to pray for all the costs to come, that we would see amazing miracles there.

Love to you all.
Tuesday, May 12, 2009

For those who asked...

I am starting this blog as an my outlet to share our story and also for those of you who want to stay updated you can. Let me just start by saying, God's Grace is sufficent and I love that we can Trust Fully and Hope Always in His great ways. Today I am gonna start with where we are at currently and will share the story of our past experience with our first son Evan later.

Currently, I am living in San Antonio, Mike joined the Army National Guard 4 months ago and just finished boot camp in Georgia and will continue on with 6mo. -12mo. of training in San Antonio, Tx. where he will be accomplishing a degree in Radiology, which has been a desire of his for some time know. God opened every door for this oppurtunity and though it has been full of trial, we are still confident in His awesome plan, and have eyes to see the end is not that far off. I moved here knowing that I would be living in a 2 bedroom apartment about 10 minutes from base and Mike has to live on base for at least the first few months, it is a weird transition and all that God is doing in our lives is challenging.

Five days before Mike left for boot camp, we had a routine ultrasound to hopefully find out the sex of the baby before he left. Because I am high risk I frequently have ultrasounds, we lost our first son to a neural tube defect called Anecephaly and my risk for carrying babies with this and other neural tube defects greatly increased after one child.

As our beloved Dr. Beatse was doing the ultrasound I knew something was wrong, as this is our third pregnancy with him and we have a really strong relationship with him. He told us that what he saw looked like Spina Bifida on the lower spine of the baby, but wanted to send us to the specialist to confirm this. He apologized profusely and was so sad at the diagnosis. Mike and I of course went into our modes, Mike always feels it right away emotionally and I always go into emergency contact mode, I call all our close friends and leaders to tell them all the details and ask for pray and support. The reality hits me about 24 or more hours later and at that point Mike has adjusted and is an amazing support to me, I love the way God designed us to carry and strengthen one another.

That day we had an appointment with a specialist in Milwaukee, we dropped Rowan off at my in-laws and drove to the hospital in shock. We would be working with the same specialist that worked with us with our son Evan and he remembered us and was saddened also by the pure fact that we were with him again. The ultrasound tech did her thing, she was kind and showed us some of the features of the baby that were healthy. After the ultrasound, Dr. Shohan was convinced that this was Spina Bifida and that it was not fatal, they however can not tell you the degree of until the baby is born and at that point they will operate.

This was an obvious blow and we felt a wide range of emotions, but mainly we felt honored and thankful that we were still gonna get a baby to keep, healthy enough to live a high qualitied life. So we continued forward with Mike leaving as we felt assured that God foresaw this diagnosis and had still opened all the doors and ordained this as his timing. In both our hearts we anticipated this "season of seperation" as one of clinging and growing strong in God. We had no idea what was to come.

My care was to continue on with both my regular OB and the specialist, I would see the specialist every 2-3 wks and Dr. Beatse my OB every 4 wks. So at my next scheduled appointment with the specialist I was 18 weeks and anticipating the big reveal, since at our last appointment there was no certainity of the sex. Dana, one of my dearest friends journeyed with me. Now, going to a specialist is full of uncertainity and honestly can be so hard on your mind, emotions and heart, seriously breaks your Faith down. There job is to give you all the news, good and bad, usually it is not good, but bleak and unhopeful. So needless to say I was prepared in my heart and mind for the news and to hear God in it all, desperately wanting to see his hand.

Both Mike and I's Faith was different this time around, with Evan we felt so confident that all God was promising us was that we could put all our hope in him and that no matter what the plan for Evan's life, there would be great PEACE and that was exactly as it was. With Phoenix, which is the name we have chosen for this baby, we both felt that God had spoken a promise of Healing and Restoration in this child. Now, we both know and have been so aware of this one constant in our lives, GOD's ways are not ours and His thoughts so much higher. So we put no expectation on what Healing and Restoration look like, we just are fully confident that His Grace is sufficent and that Phoenix' life, whatever the quality of it in our eyes, is God's perfect will. None of these thoughts are said lightly as it has taken much heartache and Trust to come to these places in our Faith and we know God is great always.

Back to the specialist appointment, it was increasingly worse news... Dr. Shohan began by showing us the Spine and saying that he can say with all certainity that this is not Spina Bifida but rather a much more severe case that he couldn't even name, because he had never seen anything like it. Both the spine and cord are largely exposed and the degree at which the spine formed outwardly was so severe that he was "baffled" as he continued to state. He went on to tell us that the baby seemed to display a bowel issue and signs of a heart condition that is fatal. Also that both of the babies feet are club foot. Both Dana and I burst into sporadic bouts of tears as this was something we couldn't have been prepared for. He pushed for me to get an Amniocentesis to help him narrow down the diagnosis to something more specific and I continued to say no at this point for many reasons. But I did agree to an MRI as this would give them a more in depth view of the babies spine. The MRI only confirmed the news we already knew, the degree of curvature of the spine was so severe that they really did not know what to tell us the road ahead looked like. Outside of a miracle ( which is what we are believing for) this baby will be severely handicapped and forego many surgeries in his short life.

Now, Mike is at boot camp and we are unable to talk at this point, so I have to call the emergency contact line to get a hold of him. This was a frustratingly hard conversation to have over the phone in 15 minutes, with his drill sergeant breathing down his neck. What a challenging time for both of us and our hearts. We continued to cling to God and fight for the Truth.

Let's fast forward to today.... The great news is that Phoenix "once existent heart condition is gone". The hard news is... Mike and I are daily battling many, many trials of all kinds, we are standing and believing in for the best and are asking all those who are reading this to FIGHT with us. These are times that produce great strength in our relationship with God if we so allow them to, we need one another and God is listening to the cries of our hearts, he wants to answer and we believe he wants to change all of us. Those who've known us for a short or long time, those who fell upon this story, we believe that the stirring of your heart is there because God is calling to you and we are asking that you respond on yours and our behalf.

Thank you for reading I will write more as we get a new specialist here in San Antonio and as we see what the road ahead looks like and as I have a need.