Anniversaries and the vacation refresher ....

So its been awhile I apologize I mean to update then get tired or busy and forget

Last Thursday was Chris and I's 10 year anniversary. The last 10 yrs sure have been a test of for better or worse. We have had plenty of downs. Chris losing his job, having family members die some WAY to young. Taking a huge loss financially on the sale of our old home. MANY MANY health issues with family members. Behavioral issues with Kayla. And too much more to mention. But NONE of that would prepare us for the down of having our son die.
Even with all of those.. the ups out weigh the downs 10 fold. We have each other, Kayla wonderful family and SOO many great caring friends and neighbors that we are so very thankful for and feel so blessed to have.
We celebrated our anniversary with Dinner on wed at the Final cut it was a quite peaceful dinner. We toasted to Korbin
Friday Korbin would have been 2M old I miss him so much.


July 8th we went to Myrtle Beach our 1st family vacation just the 3 of us. I usually have everything packed and planned to the T days before. I didnt even pack us til 7pm on the 8th. We slept in everyday made no plans. Went to the pool and just hung out it was so unlike me and frankly quite liberating. We had a wonderful time and just what we needed some together time.

So last monday we had our appt with Childrens Hospital Human Genetics Dept. As usual it was another appt of ...let wait and see. Our favorite new game I think I have already perfected that so it can go away now..
We learned some things
#1 (which we already assumed but hoped not) they are 99.99% sure it WAS something genetic with Korbin and not just one of those things that happens.
Why, well it was explained that he had more than one anomalies and none of them could have caused the other. So with multiple things that means genetic.
#2 they have strong GUESSES as to the two possible syndromes Korbin had
Meckle - Gruber or COACH ...which we were told over lap on symptoms.
The complications are that BOTH of those each have a 25% chance of reoccurring problems with EACH pregnancy...keeping in mind if Renal (kidney) anomalies repeat that is high chance of mortality again :(
#3 since these syndromes require that BOTH parents each pass a recessive gene onto the fetus/child there is a 50% (or more) chance Kayla is a carrier...having chance one of us passed it to her. Meaning this could affect her pregnancies and children.
While the genetics DR informed us (more like tried to ease our worries) that although our current situation is very real for us, the chances of two people who are carriers actually finding each other out there is really rare...almost as rare as the conditions.

What they are offering us at this time is they are trying to recover the cord blood collected at birth for testing and they are sending everything they have on Korbin to a special group in Seattle who specializes in these types of things...we still may never get definite answers...

Were does this leave us..... it has not changed our minds about trying to have another child. Again we believe there is someone else in charge at all times only he knows when, why , where ect..
All we can do is PRAY. I have had people say HOW CAN YOU GO THROUGH that again and I say.. Korbin. How can we NOT.. if we gave up or never tried we wouldnt have had Korbin I dont for ONE SECOND ever regret him or the brief time we shared with him.
I have searched for the WHY answers WHY did this have to happen to us. For those of you reading who have been through this you know there are NO answers. It sucks. And once, twice or three times makes no difference to me. Especially if there is a chance we can have a healthy baby to take home.

I will keep you all update if anything comes back on the cord blood testing or anything from the group in seattle.


I feel like I had so much more to share this blog entry but I wait to long in between posts I have since forgotten..oops sorry.


Thank you to all who prayed for the Merk family.
Sadly again I need to ask prayers of comfort for another couple The Volz's who lost their (first) child their son Gabriel was born with a rare form of cancer. He was a fighter born June 28th and passed away last Saturday July 23rd.
They are kind and caring people I will never understand why god chooses who he does for these things I just have to have faith.
Please pray for peace and comfort for them during this EXTREMELY difficult time

mysterious angels, the wishing well, and our family takes another hit or two...

I will start with the latter.
It started out as a normal holiday weekend. We went to our camp for the first half and finished the second half off with friends and family.
While at camp I got a text from my sister (service there is touch and go you cant dial out to save a life..literally) it read.."did you hear about the baby giraffe" So I instantly tried to bring up facebook to find out what she was talking about sure enough I had service got to the Cincy zoo page and read the horrific update :( (oddly i couldnt get service again after that)
For those of you who dont know Giraffes are VERY special animals to our family, simply they are Kayla's very favorite. She has had a tiny stuffed one she has carried around since she was 9 months old named cappuccino (or cappy as we call her) when kayla heard the zoo was going to have a BABY one well you would have thought this kid won the lottery or something she was BEYOND excited. In fact due to my bed rest I didnt get to take her to see the baby until just this past Monday the 27th
When Korbin died friends of ours even donated in his memory to Zuri the baby.
The loss of the baby giraffe was a difficult one to us..we havent even told Kayla yet and dont plan to until we are on vacation.. a HAPPY place to help ease the pain.

Then hours after getting that call we got word from some dear friends of ours that Tony Merk the little 6yo (bravest little man i have never met) who was battling brain cancer was taking a turn for the worse. His family had done all they could (and the term above and beyond doesnt even describe it here folks) he had emergency surgery on Sunday which the Drs frankly said only bought very little time.
Yesterday at 6:20 pm Tony earned his angel wings and INDEPENDENCE from pain and suffering and went on into the hands of our lord.
This was a LONG painful journey that Chris and I followed closely. Many of the Merks are very dear close friends of ours. Chris has been friends with them since a teenager and they are like family to us.
On the way home from my mom and dads last night Chris and I were saying what a REALLY nice weekend we had. We were surrounded by many friends and family. It was relaxing even tho we ran around a lot and it had almost seemed to good to be true...and sadly it was :(
We had prayed for weeks (months) for a FULL recovery of that precious little man. I had even prayed "oh please lord if my sons brain has to be damaged then HEAL Tony's give him the good working parts so that he may live a full life"
but as always God has other plans and we will never understand them in this world.



The mysterious angel...we are not sure but some time a few weeks ago an adorable white angel statue sitting reading a book just appeared on the back corner of Korbins grave. We thought it belonged to the boy behind him..Austin. So we kept moving it back and it kept inching forward. Last week when the three of us went to visit it had been place SMACK dab in the center of korbins grave as to say HERE silly this belongs HERE!! We are not sure who placed it there or if it truly belongs. No one in our family knows where it came from. But oddly it is VERY fitting you see because Kayla LOVES books. When I say loves I really mean loves. Since she was able to sit up she has had a book shelf in her toy room. At the old house on Morrvue the shelf sat right in the playroom doorway. She used to sit there and pull EVERY book off the shelf to look at. Then after a month or so my very smart best friend (who loves to organize and rearrange entire households lol) said I think we need to move the bookshelf to the other wall that way if she pulls all the books off they wont be all over the floor in the doorway. So we moved it :)
To this day I cant get our of reading at least TWO books a night. Sometimes I will go in at night and she will be up still reading books in bed.
So to whoever has left the angel we love it THANKS :)

and finally The wishing well...
many of you hear this and think maybe one of those things they have at the zoo or museum center you drop the coins in and they spin round and around. Or maybe you are picturing a good ole fashion one like the one snow white sang into with the roped bucket.
Nope that is not what I am talking about here.
Last Thursday I took Kayla to McD's for dinner while placing our order Kayla noticed one of the coin collection containers for the Ronald McDonald house and she asked "mommy is that a wishing well? can I have money to make a wish?"
I stood there in awe for a moment of how a tiny child could bring a realization that we were too blinded to see before. You see I had personally (even tho we always put our change in there) had never looked at it that way...but that is EXACTLY what those boxes are.
One of the moms I have recently met from our Encephalocele support group had just had her son (at 32wks) and was actually using the RMH to stay at while her son Liam was in the NICU. She had been describing all the wonderful accommodations they had there. And best of all THIS particular RMH was RIGHT INSIDE THE HOSPITAL.
Most people dont realize what its like to have a child at the hospital and have to drive so far home and back to be with them that alone is a GREAT reward.
SO after pondering Kaylas question I looked at her and replied "why yes baby it IS a wishing well it helps MANY sick babies like our Korbin be close to their familes" and I handed her a $5 bill and said now make a big wish for those sick babies!!



So its been business as usual for us (running around like a bunch of chickens with their heads cut off)
we are preparing for our family vacation next week.

We ask all of you still following our blog to please pray for peace and comfort for the entire Merk family (and there are a ton of them :) ) as they go through this very difficult and trying time


God bless you all and HUG and KISS your loved ones often!!!