keep walking

It has been a week around here.  This week I met with my new doctor to take some time to care for myself.  Sometimes as mommies we forget that we need to keep our own health up.  We spend so much time worrying over our children we don't take the time to worry about ourselves.  But our kids need us.  And they need us to be in the best health that we can be in for them.  So as much as we hate it, we have to add a trip to our doctor in our schedule somewhere.

Well I have had several doctor appointments here recently that were just "routine" but turned out with the "unexpected" problems that doctors seem to find.  When they find them it seems to slap you across the face and you wonder "how did I miss those symptoms??"  That is where I have found myself lately.  On the floor wondering where did that diagnosis came from and why didn't I see that coming.

Then today we add our son to the rest of the kids who is showing signs of Primary Carnitine Deficiency.  This has really been hard for me to handle.  It doesn't seem fair sometimes.  And when you have found that most of your family falls into the category of 1 in 100,000.....well it can be a pretty lonely place to be.  Who do I turn to when no one understands?  Who do I run to when I need encouragement? Who do I see when I need advice when a new "symptom" pops up?

Throughout all of this, between my doctor appointments and the kids struggles, I hear God saying...."keep walking"  So I put one foot in front of another, and then I get results back on a test, and God says "keep walking"  so I take one more step.  Then one more child falls into a ratio...and God says "keep walking" I take one more step then I run into the wall of anxieties and God says "keep walking"  and then  I stop to cry  and God says, "keep walking"

See Jesus was mocked, laughed at, and made fun of....and God told Him to keep walking.  He was betrayed, judged and denied....and God said "keep walking"  He was hit, beat and handed his own cross....and still God said "keep walking"  Joshua went to fight the battle of Jerico, and was told to walk around the walls of Jerico seven times for seven days before his battle was won.  Moses wondered in the dessert and on year 39 God said "keep walking"

When our load gets too much to bare, and we don't think that anything that is handed to us is what we deserve, and the road gets too bumpy, and it doesn't make sense and it feels like we are walking in circles.....  sometimes the hardest thing to hear is "keep walking"  Today I wanted to throw my hands up and say "God I didn't sign up for this!!!!   I cannot carry this burden!!"  He then reminded me that I don't have to.  All I am called to do is hand it to Him and trust Him...I may be going thourgh a drought now but just like Elijah my "rain " is comming so for now I..........keep walking...........

One Step At a Time

I would like to introduce you to Ava.  Ava is my third born.  Ava stole my heart from the moment she was born.  I think it was because, out of  our three children, she is the only one that looks just like her momma.

When we (now I say "we" here,  but we all know that I mean "I") were pregnant with Ava, we were given the news about Anna, our oldest, having a mitochondrial disorder.  The Dr. told us, "now you are going to read that these can be fatal so I am just going to warn you about that now"  Ummm, now I am guessing this is something you should never tell a hormonal pregnant woman!!

We knew that Anna was strong.  She was growing and developing which is the one thing that kept confusing the doctors.  Our thoughts then turned to Ava.  That sweet little girl in the picture who we now faced the "unknown" with. 

As many of you know Anna has PCD. (if you are not sure what that is check out my blog entitled "carnatine what???")  This being genetic we knew there was a chance, now, that Ava could have it as well.  Now, what's the big deal right???  She comes out she, has the disorder,  you give her the meds all is good.  Well not really.  See ignorance is bliss.  I read.....A LOT!!  If there is something wrong with my babies I am going to read everything under the sun until I have diagnosed them with something.  The kids doctor, bless her heart, told one of the student doctors observing that day that if it hadn't been for my research then Anna would be just another "unknown" and swept under the rug without a diagnosis.

Upon my reading we found out that PCD is commonly misdiagnosed as S.I.D.S.....Oh how I wished I didn't know that when I was 6 months pregnant with my child!!!  The last three months of my pregnancy were spent preparing my heart if , God forbid, something were to happen. 

Well she came three weeks early at 9lbs and 0oz.  Head full of black hair and more beautiful then I could have ever imagined.  I looked at her and all of my worries and anxieties went out the window.  I knew that feeling.  If I had to, I would fight for her just like I had to do for her sister.  I was her mommy.  God chose me for that job.  God chose her for me, and me for her. 

A year later and our Ava has started showing all signs and symptoms of PCD.  She is averaging an episode every other week.  Her sugar is getting very low, and her eyes are starting to look sunk in.  She goes to the doctor next month to start the "testing process" which is not fun for anyone.  Seven tubes of blood and a urine sample have to be collected while she is in one of her low sugar vomiting episodes, to get our answer.  Now keep in mind these happen first thing in the morning, so with Ava's next episode we have to load the car up with me, my husband, and our three kids one, which is vomiting, and one (Anna) who may or may not be in an episode herself, and get to the hospital where they have no knowledge at all about this disorder and convince them that they have 30 minutes to get this  blood drawn before we have all wasted our time.  We have done this before.  We did not leave a good impression.

Now, don't get me wrong.  I know I am blessed.  I am a mommy of three, and somewhere there is a woman who just wants one.  I have two difficult children but we have found a medicine that works for now and that is what I hold on to.   But, this whole process has tested me as a mother, as a friend and as a Christian.  I have been judged on how I am handling this to the point where I just quit talking about it to anyone.    There were times I asked for prayer and was made to feel guilty for asking for prayer, so I just quit asking.  There were people claiming I was a "drama queen" without any understanding at all of what we were going through.  There were tears that I shed behind closed doors out of fear that they would be judged too.

  Now understand too that there were some very dear people who lifted up Anna in prayer and I am truly grateful to those people.  See because when it's your own child you really don't know how to pray except for selfishly  But then I started to pray, I realized  that no matter what, God is there.  Sometimes its just me and Him, but He is always there.  I prayed in the hospitals as they drew blood, "please God let this be our answer"  I prayed in the mornings during the episode "please God let this end"  I prayed with her sugar checks "please God, let her sugar come up"  And most importantly I praised, "Thank you God for getting us through this one, and thank you for our answer"

I don't know what the future holds for Anna and Ava  but one thing remains the same....God is with us every step of the way,   He won't judge my prayers , He will listen.  Every tear I cry, He wipes away.  He helps me put one foot in front of the other and climb this mountain one step at a time  and reminds me to be still........ because I don't have to do this alone......