Thank you for your Presence, Plates and a Perfect Package

We are continually reminded of Gods promise of enough as we receive little reminders of his care through those around us. Thank you to the friend who brought over a stack of plates knowing that sometimes you just need to break something. Thank you to the thoughtful family for a package of incredibly soft stuffed animals that unexpectedly arrived on a perfect day distracting the older kids. Thank you to a special friend who gets it for the presence and prayer.

Bailey is Doing Better!

Last week all of our kids, like most of the rest of the world, got upper respiratory infections. With the additional mucus Bailey ended up aspirating and was running a high fever. As a result of the fever she had prolonged seizures for a few days. We are happy to report that after a few rough days she is doing better. She is on an antibiotic and we are doing breathing treatments twice a day with a nebulizer.

we remember....

On December 9th, 2004 our dear friends Ben and Jaren Nash lost their precious first born son, Jack Benjamin Nash. Two days after this indescribably painful loss we sat with them in their living room listening to them share their story. They told us they could choose to become bitter or better, and they said they choose better. We have watched them live this out. Thank you for being so real and authentic, and demonstrating that in the most difficult of circumstances we can become better. We love you, we cry for you, and we remember.

Giving Thanks

It's been much to long since our last post. The last month and a half has definately had it's challenges. Bailey continues to have seizures, and still show many signs of discomfort and pain, she is also still struggling with sleep which means Matt and I are as well. Life has seemed incredibly difficult and dark for me personally, but I was reminded today just how blessed Matt and I are to have such amazing family and friends who continue to support us in this difficult journey. I am giving thanks for all of you, thank you for caring and loving us through this.

I pray that you will have a meaningful time of giving thanks for the many blessings in your life over Thanksgiving. We will try to post some more specific updates on how we are after Thanksgiving.

I choose.....BEAUTIFUL!!

I'm not the best communicator but none the less i wanted to share with you what God has been teaching me through my children and especially Bailey during the past weeks.
... On september 14th Bailey had her pediatric opthamology appointment. During our visit the doctor performed a series of tests on Bailey in order to determine how much her vision was affected by her brain injury. Unfortunately Bailey's vision has been greatly affected and she is considered legally blind. Although this wasn't a huge suprise to Matt and I, there is still intense sorrow that goes along with this news. I have felt discouraged, hopeless, angry, and sad that my precious Bailey may never see our faces, or smiles. Bailey will probably never taste ice cream, or eat strawberries, she may never be able to tell me how she is feeling, sing "Jesus loves me," or say "MOM," she will most likely never walk, ride a bike, or dance around with her brother and sisters. However, in the midst of this grief Bailey is giving me a new perspective and is showing me what beautiful really is.
...There are a number of moments throughout my day when it is easy to become frustrated. For instance when Carter and Mckenzie track in mud for the third time that day, or when they spill their spaghetti on the floor, or voice their strong will/opinions (which are typically different from mine) in very loud and passionate ways. Because of Bailey I realize there is beauty in these moments. Carter and McKenzie are able to play in the mud, they are able to eat orally, they can eat things like spaghetti, or ice cream, or strawberries. They are also able to talk and reason and express their opinions. As frustrating as these moments as a mother can be, I would give anything for Bailey to be able to do these things.
...Thank you Bailey for teaching me to see the beauty in things, and for helping me to become a better Mom! You are truly BEAUTIFUL!!

drops like stars...

*i wrote this entry in my own blog a couple of weeks ago and asked

heather if i could post it here...thank you for your authentic selves.  -ben & jaren

i have been profoundly impacted by my dear friend, 

heather and her story.  

her life.  her authentic self.

she and her husband have 4 children under the age of 4.  

one of her twin daughters suffered significant brain damage at birth.

life has significantly changed in their home.

i was able to sit across from her this morning at panera 

and listen to new parts of her story.  

not pretty parts.

indescribably difficult, painful parts.  

the kind of parts where

the words that start to describe it 

can do nothing else but take your

breath away.  

as i listened and grieved these new parts with her...in my mind i wanted

to insulate her...protect her from feeling any more of this ache.  and it 

hit me that if that was even possible, it would keep her from experiencing

some of the most intimate moments that she has had with her Savior.

i saw the most beautiful in her.  

she, in the midst of her sorrow was shining.

{and not the kind that is trying to be -optimistic, positive--blah!}  

it was a true shining all the way through. 

it permeated her.  

and i realized it was because i was seeing the Most High.  

i saw that He was meeting her where she was at...and she was letting Him.

i saw the genuine and the real alongside

seeing the most painful parts that she and her husband are now walking through. 

  

i guess that is why i am up writing this at 4:00 in the morning.  

i couldn't sleep-not without doing something

about my experience today...i couldn't let it go unnoted. 

she lent me this book...drops like stars by rob bell.  she mentioned that it was like a coffee table-kind-of-book and it would take no less than 30 minutes to read.

as soon as i got home, i opened it and read it.  

i couldn't put it down.  i gave it to ben and he said the same thing.

we could relate to it on so many different

levels.  

it is the most accurate to placing words and 

experiences to suffering and loss that i have ever come across.

if you are finding yourself in a place of suffering, or know someone else who is..this book may be a great gift for

you or someone you care about.

Development: Hers and Ours

Bailey had a six month neurodevelopmental appointment last week. Although we always long to hear good news the reality is that these appointments confirm what we already know in our heads but struggle to accept in our hearts.

Bailey continues to be on a developmental trajectory that will leave her severely and multiply impaired. In addition to an ongoing lack of head growth, she is beginning to exhibit many of the postural and tonal abnormalities that are typical for children with cerebral palsy. These patterns include increasing hypertonicity or tightness through her arms and legs and hypotonicity or low muscle tone in her trunk. She also is demonstrating clonus (a spasmodic alternation of contraction and relaxation of the muscles) that results in her ankles bouncing in a jerking motion. She is also "stuck" in many of the primitive reflex patterns that are typical for infants but then must become integrated to allow development of consciously controlled movement. As a result she continues to be unable to perform purposeful motor movements. She also continues to be unable to smile or verbally interact in an intentional way. The development of additional saliva as she begins to cut teeth has resulting in increasing difficulty for Bailey in managing her secretions. She often gags and chokes on the saliva and we have begun to use a suction machine to assist her with clearing her airway when needed.

Some of the positive developments include the addition of a new medication that along with the use of a feeding pump significantly improves her comfort with feedings. This also has helped her with sleeping and even occasionally napping during the day. Overall, in the past two weeks for the first time, she has had more comfortable days than days when she was in pain. This has been a tremendous blessing.

I personally often (certainly not always) feel a deep sense of peace in this time. In part this is because the tyranny of the immediate prevents too much deep reflection. But even more than that, it is the acute and daily reminder that this situation is so clearly beyond us. There is no illusion that we can control this situation. It just is. As a result it is easier to live in the present moment without fear of the future. Thank you all for your ongoing care and concern.
Sincerely,
The Mekkes