Thursday, January 15, 2015

This Side of the Building

Saying it's been a crazy couple of weeks would be a major understatement.

Let me start by telling you a story....

Last month I was supposed to pick up my food commodity package from WIC.  It's for Sam since he's too old to get regular WIC.  It has a bunch of non perishable items in it, like cereal and boxed milk.  Long story short, I went to the wrong location to get it because of a communication error when they called to confirm, so I left to go to the right place and was running late for my dr's apt, so I had to leave without my food, only to get back to the doctors office... 6 MINUTES late... and they apparently only allow 5, so they called me a no-show and wouldn't allow me to be seen - and were going to charge me a no show fee! (thankfully they waived that!)

I had a BREAKDOWN in the waiting room.  I was crying and snotting all over myself and I didn't care.  I cried so hard my head was pounding and I called Matt sobbing, saying "Something has got to give, I'm going to lose my mind.  I can't do this anymore... I don't even have food to show for this and now I can't be seen and my blood pressure is out of control... "  I could hear the utter powerlessness in his few words as he listened to me fall apart.

They ended up telling me if I waited around for 1 1/2 hours, they could get me in with someone else.  So I did that.  When they called me in, a friend I've made through my blog who helped at Rachel's Race this year walked up and handed me a little gift she had for me... Every time something like that happens, I'm reminded of how God cares for me.  He has done it through all of you for all these years and it is absolutely the most beautiful part of this journey... I can't even put words to what it does for my heart when I know that because of my girl, I have people who I wouldn't know otherwise thinking of me and caring for me.  It's so humbling and so encouraging.  I'm so thankful.

So anyway, I got nowhere in that apt... But I tell you all of that so this next part makes sense...

They rescheduled my food pick up for last week.  That morning, I was having chest pains and my dr wanted me to come in for tests... I told them I needed to get my WIC bc I missed the last appt and needed the food.  Just before I left, I got the call that Isaiah and Asa both have two mutations in their C677T MTHFR gene.  It wasn't a total surprise, I fought to get them tested for a reason, but they were the two I DIDN'T expect to have it - so it really stopped me in my tracks.

I got in the truck to go to WIC and I lost it.  This breakdown made the one in the waiting room the week before look like no biggie.... I probably shouldn't have been driving.  I don't think I've cried like that since right after Rachel died.

I felt so helpless.  I felt inadequate.  I felt the weight of responsibility.  I felt afraid.  I felt angry that for YEARS the doctors have been ignoring all of my concerns about my kids... "It's growing pains"... "It's night terrors"... "It's behavioral"... "It's normal."... I knew there was something wrong and suddenly it all made sense... and I was furious that nobody listened to me.  I found myself crying out to God "Lord Jesus, not my babies!!....Please God don't let them go through what I am going through."  I wasn't thinking this... I wasn't softly praying this... I was *shouting* this as I drove down the road soaked in tears.  I mean, I had a full blown anxiety attack, trouble breathing, gut wrenching, pounding the steering wheel kind of cry.

I didn't realize I was thinking it, until I saw myself write on Facebook... "I feel like I'm killing all of my kids.  I don't know what's worse, to watch Rachel die right away or to know that my living kids are going to have to endure what I go through because of something I passed down to them."

I was always content with not knowing why Rachel had anencephaly.  And when I first found out about my MTHFR mutations, I still thought that there was a possibility that it was just a 'fluke' or 'bad luck' as the dr told us... maybe it wasn't my body that failed her... maybe it was a random occurrence... I didn't want it to be me.  And I think sometimes, it probably isn't caused by the mutation, which is why the Duke Study has not found that to be true as of yet.

But that day, I just knew it was the mutation that killed her.  And the fact that the kids have 2 mutations in the C677T means that Matt also has at least one mutation.  It was just heartbreak overload.  Matt's had extremely high blood pressure since we met when he was 21.  Guessing this is why....

So as I got closer, I didn't know where I was going so I followed my GPS and it took me right at the stop...  I realized a couple of blocks down, it was the wrong way, so I turned around and drove back past the road I came in on.  I saw a church so I pulled over to see if that was the place.  I didn't see a single car in the lot, so I called WIC.

The lady told me that they weren't in Farmington that day and that my apt isn't until February.  I informed her that this was the day I was given and that this was now the 2nd time they gave me the wrong location. We realized that we were, yet again, having communication trouble when I told her that I was there for the commodity program, not regular WIC.  She said yes, I was in the right place, that they would be there for another 15 minutes....

But I was looking around and there was NOBODY.  I was so frustrated... I decided to drive around the back of the building through a very small opening - and there was the food truck!  The worst part is that it was parked right on the side of the road that I came in on!  If I had looked to the left when I came to the stop where the GPS told me to go right, I would have seen it.  But instead I drove around in circles and literally sat on the side of the very building where the food was, crying about how lost I was.

I went in to check-in and told them what had happened and I cried some more - people must think I'm off my rocker!  She asked if I was having a hard day... I sobbed, "I'm having a hard life" and my tears just kept flowing, dripping all over the table.  I was a mess.  My heart was broken.

I thought a lot about the picture of that event...  and I really think it was a little parable from God to me...   I felt like nothing was going right.  I felt like I was going to go without the food *again*... I wanted to give up and just leave.... I felt frustrated and alone...  I felt completely lost.

But just around the bend... there was the food truck... I was not lost, I was right where I was supposed to be, I just couldn't see the proof of it yet.

I got my food and went home (and had to give half of it away because the kids can't eat cereal or pasta with their gene mutations) but this thought just stuck with me... I can't see what's around the bend and somehow, some way, I need to learn how to be still and wait on God when I am scared and uncertain of what to do.  I need to not give up, be willing to keep looking and take the next steps and eventually, God will provide all I need.  I don't need to see the answers in front of me to trust He has it covered.  Because I *KNOW* He does.  I know it.  He always has.

I've spent the last week, trying to work my family towards a diet safe for us.  It's easier to do it for me - but trying to feed 7 people all whole foods and gluten free - and nothing that is fortified with folic acid or B12 - and then learning about the arsenic in rice and GMO's in corn and the fact that our bodies CANNOT process any of it!  It's overwhelming.

So many people said it was so good I knew about the kids having the mutation bc now I could make the changes I need to - but that just made me feel worse because all of the changes require money!  Right now we use food pantries and WIC and most of that food will not be anything we can use now.  I spent 3/4 of our monthly food budget in one week and only got two things of meat.  So yes, I'm glad to know... but the pressure to keep them safe without the resources to do it is overwhelming.  I felt defeated and incapable.  And it's hard to remember that God IS capable.  But I know He is.

For the last couple of months, I've been praying like crazy for God's guidance with my medical issues.  And one night I woke up in the middle of the night and heard, clear as can be, him speak to my heart that I need to focus on the gene mutation.  I think I blogged about that... but it was when I decided to stop chasing doctors around... and it has been amazing how God moves when I get out of the way!!

So I made an apt with a naturopathic Dr who was recommended to me by a friend who has the MTHFR that sees him.  Problem being, he doesn't take insurance and payment is due at the apt.  I asked my family and close friends for help and nobody could help me.  God brought to mind another friend I've made through Rachel's life that is from Switzerland and I felt prompted to ask her for help.  It was extremely awkward asking someone I've never met in person for financial help... but she feels like one of my closest friends, even though we're miles apart... so, I humbled myself and did it - and she offered to pay for my first visit!!  Yet again, I'm reminded what a gift Rachel is....

I went to my apt yesterday and it was amazingly informational.  I started taking these vitamins in July or August that my friend takes, thinking since we have the same thing, they'd be good for me too.  And over the last couple of weeks, I felt like I should take less of the folate I was taking, but wasn't sure why... so I just listened to my gut since I had been praying about it so consistently.  Turns out, God was providing because the Dr yesterday told me the vitamins I'm taking are like poison to me right now!  I was baffled, but after 2 hours of questions and answers, it all made sense.  I would have never figured this out on my own.

He gave me a shot of vitamins and sent me home with a plan and we will talk in a couple of weeks, but he said that every, single, one. of my symptoms make sense and he is confident they will get better and he can help me!!  And then half way through the visit, he says "There is a word I want you to remember... it starts with H... do you know what it is?"  I said no and he said "HOPE!"

It was so clear I was right where I was supposed to be, even if I couldn't see the other side yet. Even if I feel lost and overloaded and in the 'wrong place'...  I am so encouraged that FINALLY someone isn't confused by me!!  Everything he showed me and told me made so much sense.  I'm SO glad to have someone who *knows* (not guessing!) what to do to help me get back to healthy.  And I'm so relieved that I don't need to chase answers anymore!  And the best and most blessed part of the entire thing is that I can see God's hand in ALL of it... from leading me to our new church where there are a few people who have the MTHFR who recommended this Dr... to the kids' new doctor agreeing to finally test them... to the cost of the apt being covered... right down the the very fact that absolutely none of any of this would be happening if it weren't for our sweet Rachel.

Without Rachel, I would have never asked for the test - I'd be completely confused about all of my symptoms and would have no idea how to help it.  I wouldn't have known to test the kids, and the dr's sure wouldn't be coming up with the friends who are newly diagnosed would have no idea and would still be searching for answers they would never get.... I wouldn't have all of these great friends to cheer me when life is hard...  But oh, how I miss her.  All of this awareness has really brought on some hard things to work through.  Thoughts that probably are irrational, like wondering if she was in pain when 'it' happened to her... anger about the idea that if someone had listened years ago... maybe I'd have her right now.... and mostly, I just miss her so much it hurts just saying the words.

Today I got the call that my little E has two of the mutations as well... and I didn't fall apart like I did the other day. I can look back and think of how God led me to not allow him to get Nitrous Oxide when he got his tubes in November and I know that likely could have saved his life.  God let me 'stumble' across that ONE place online where I read something about Nitrous... and it was absolutely not connected to any search I was doing for E!  It was just God's grace making me aware of something I needed to know to protect his child. I know that if I am walking with the Lord, He WILL direct me and help me keep my kids safe.  He is with us.

Now we wait for Desirae & Sam's results, and ironically, they were the two I thought would have it... so we'll see... Desirae has been really sick - headaches (better off of gluten) and throwing up regularly for no reason.  She has been doing this for a couple of years now - maybe throwing up 4-5 times a month... Dr's blow me off, of course.  so if you could pray especially for her, that would be good.  I'm bringing her and Isaiah both to the pediatric rheumatologist for joint pain (that they've had for YEARS! ugh)  next week... but my guess is, it's all related to the mutations!

So, while it's really hard sitting on this side of the building... not able to see what is ahead, how God will provide, or what the outcome will be... I, for the first time in probably over a year, feel so encouraged and hopeful that healing can be in my future!!  I left my apt yesterday so excited to feel better... I cannot wait!!  I have a long list of things I want to do with my young family and I can't wait until my health doesn't stop me anymore.  

But regardless of what happens, or how it plays out... I know that God will be with me and that He will provide everything I need to get to the place where I can see His hand in it all and know I'm right where I'm supposed to be.

Lord, help me to walk this difficult path with grace and joy, always just a little closer to You... as I lead my children to do the same.....


  1. Your faith is the miracle, my friend. As you live in your faith, you live in your miracle. You inspire hope and faith in so many! Thank you for sharing your story and your faith! You and your family are in my prayers.

  2. You and sweet Rachel's blog are a blessing for so many. Let us be a blessing for you too.
    <3 <3 <3 Hugs, anja


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