Sanctity of LIFE!

I have written about Ezra and his precious life.

the little things that aren't so little.....

It has obviously been WAY too long since I sat down and wrote out my heart and what God has been teaching me....not because of having nothing to say, for those of you who know me in person, know that is far from the truth :) I love to talk and visit...but as for blogging, truly taking the time to think through my thoughts and then get them in word form, has proven to be an accomplishment....so again, I will use this blog as a journal of what this mommy heart experiences because of..."our gift from God named Ezra."

He truly IS a gift. This truth rang true again recently through the meeting of a new friend, that I may never meet in person, but forever we have something in common. Having to hear words come from the mouth of a doctor that make your insides ache, you actually feel that your heart may have stopped...words that report on the function of your child's brain. Words that tell you that your life and his will NEVER be the same, nothing can prepare you for having this "meeting" with the docs, reality setting in of how this is not exactly how you played make believe "house" growing up, your pretend children never had a wheelchair, it was never part of my make believe play. This new friend is a new mommy to three blessings...one of which the Lord took home sooner then they would have chosen, due to a brain that was injured...this blessing lived only weeks, yet my blessing will soon enjoy the sweet song of Happy Birthday, his fourth time. Why did Ezra live and he did not? God certainly has HIS ways that are higher then ours and with purpose, but I still wonder...my heart was heavy and still is for this new friend, this mom who continues on in the strength of the Lord, I am glad for a Rock unmoving. I have come to the conclusion, that yet again, God has chosen this path of life, caring for and raising a son that is in every way dependant upon his parents and family, because He wants to teach me...so when I re-visit those first days and the waves of emotion rush over me, thinking back to such uncertain possibilities of what Ezra's life would be like, I smile at where we are today...do I want some things different, well, of course, but I am peaceful with where Ezzy is in his development...it still makes my heart drop when someone uses some words so carelessly, but then again, the world of handicap is not their world, if they ever entered in, they would never be the same, I can guarantee.

As far as titling this post, let me explain...enjoying a smile from my son is not a common occurrence, he sorta kinda smiles, his lip curls in such a way and I know that he is happy, but to others it doesn't look like much. But let me tell you of an amazing GIFT God chose to give me through my son...I saw connection, I saw PURPOSE in a smile he gave me on Monday. It took my breath away...when arriving at therapy, a place he usually enjoys due to therapists who adore him, he gave me a HUGE smile, teeth showing and all and then again, when we were leaving, he SMILED a huge smile again, it was amazing, I tickled him and he totally responded with a SMILE, certainly was in relation to me playing with him...it was a gift, it was a miracle, a boy who would be a "nothing" to the doctors, is a SOMETHING in my eyes. He is special and I KNOW God is not done with him....this was a boost to my mommy heart, who struggles from time to time wondering how much my son understands.

This was an early Christmas gift and I definitely won't need a gift receipt for this one, nope, this gift is forever in my heart.

A big brother....again

I know it has been a while since my mommy has posted anything here on my blog...she has been a little busy with my new brother, Boston Jude. I asked her to post a picture of me and him, so here we are when he was first born...I love him so much!!!

Ezra's Mornings...

I thought I would give you a step by step of how a morning for our Ez Man takes place...so welcome to his world and his morning routine!
This is also a way to journal how he eats right now presently in his life...our prayer is that he will chow down on waffles like the rest of us, but until he has that ability, we are so thankful for his feeding pump, which can be unattached from the pole and brought with him everywhere, it has a ice pack tucked inside it to keep it cool and fresh...I call it his "friend".... :)


Here is a picture of everything Ezzy eats all day long.


Here is a picture of his morning nutrients and vitamins added to his PediaSure formula.


Here I am priming his feeding pump, which means getting it ready :) Doesn't he look ready to eat?


Here I am opening a new syringe, (love new ones :)I get new syringes, feeding tube,and new feeding bags once a month) to draw out his morning medicines. He gets the same ones at night too.


Giving him his meds.


Feeding pump going, dry diaper, all tucked in, music on...ready to rest and eat while the loud crazy kids are eating in the kitchen :) He joins us during meals, but for breakfast, we keep it low key for him...until little brother starts climbing up his railings to visit him...Owen is still too short, but sure does try :) I find the girls in there with him, reading to him and re-arranging his bed...Ellie tells me, so there is more room :)

Time for a Mickey change...

A day in the life of Ez Man...here I am changing his Mickey G-Tube Button, which is the life saving invention that aids in the way that Ezzy eats.
Promise, there is no blood, but may be a bit much for some :) We are just used to "Mickey Land" here at the Borbe house!

cry ezzy, cry!!!!

little brother...

My heart is so blessed to see the blossoming brotherhood between Ezra and Owen...as with all our children, we make an extra effort to point out Ezra's needs to be hugged, kissed, and talked to by his siblings...we encourage the girls to love on him and say things to him, and then when they do it on their own, my heart melts...I believe it is a taught and also "caught" heart towards him that they learn, by way of watching us his parents and then by us teaching them about his awareness and need for love and snuggles...my prayer is that they grow up to be sensitive to those that long to be loved and just can't express their longings on their own...even many adults have not yet mastered this choice to love those that are not the "norm"...but education is what I am all about, educating those that come in contact with Ezzy, that he is a precious little soul, desiring some loving! :) Anyways, I could obviously go off about all I have to say in regards to people and what I am learning...but I'll save that for another day.

Back to the brotherly love...well, the other night after dinner, Owen was buzzing around in the boy's room, playing with toys...I brought in Ez Man to rock on his Rockin' Rody horse, Owen got all excited and came right over, and started to rock and bounce Ezzy...we then moved our playing to the floor, where I put Ezzy in a bumbo seat, great for him and his need to have a high supporting back, Owen went over to their toy basket and brought him a toy and then brought him a book...all the while smiling, like he was so excited to have a buddy to play with :) He leaned in and kissed Ezzy on the head, talk about a precious moment...I pray daily that the Lord would give me wisdom as I raise Ezra in the midst of his siblings, that I will take every opportunity to teach them about the goodness of God in his life and the blessing he is to our family. My prayer for our two sons is that Owen will grow up to love his brother and be the one to "push" him around in his seat, while playing some b-ball...that Owen will be his "arms and legs" and take on the role of his brother in a whole new way...only designed by our great God...one day I was talking with my mom and was feeling a bit "overwhelmed" with the task of raising Owen to love his brother and choose him for a playmate...I can't make that choice for any of our children...I can only pray and teach the importance to them as often as I can...my precious mom, reassured my heart and told me that I will do the same that we have done with the girls...include Ezra in their world and that Owen growing up in the midst of this family, will take on a love and care for Ezra...it was a blessing to hear these words, as she knows my heart and the burden I feel for all our children to "mesh" and be future friends...as I believe all parents desire for their children, to be adult friends and to care for each other...I guess what I am trying to say, in a jumble of words, I NEED God's wisdom in teaching my children to have a heart towards the needs of their brother...I was blessed to see the blossoming relationship between Ezra and Owen and consider it a nugget of strength to tuck away in my heart as I continue on in the journey of raising my children....

Thank you Lord for the blessing of actions brought on by the wisdom you give me in teaching my children...help me as I seek to raise loving, sensitive children who see a need and lovingly act upon it...thank you for opportunities daily in molding their character, may YOU be the fuel that pushes them to love from a pure heart and act from that love for others...I love you and thank you for the "teaching tool" you have blessed me with in the life of our sweet Ezra...only YOU know the countless lessons he has taught me...I am forever humbled and honored.

Eye and ear surgery went well...

We are now home from a two day time away, the first day Ezzy was given some Botox injections at the first hospital, 1.5 hrs. away, to help with his very tight muscle tone and then after he was awake and ready to travel, we were off to Children's Hospital for eye and ear surgery. He did well both days, but is now peacefully resting, glad to be home in his own, comfty bed! :) (mom and dad are glad to be home too!) His eyes were a lot more red and "worked on" than we expected, but he is recovering well. We are trying to keep it low key for him these next days at home....even among his younger brother's cries of injustice in their room, (nap time) he is sound asleep! :)

Our sweet little guy sure is a trooper and we are so blessed with such a caring medical team that provides Ezzy with what his little body needs.

Thank you to all of you that prayed for a safe trip and safe surgery for our little guy. We are blessed by you!

Here is another praise, Ezzy is now 20 pounds!!! That is huge ( no pun intended :) for him, he has had such a hard time gaining weight and now in the last three weeks gained 2 whole pounds! He has been on a continual 12 hour feeding schedule, hooked up to a feeding pump. He has been getting a higher calorie Pediasure in his feeding tube. Seems to be doing the trick...our next prayer request is that he will start eating by mouth again. We have been taking a break from feeding him by mouth because of a painful mouth sore that was taking weeks to heal up, now that it is, I really would like him to eat by mouth in addition to his feeding pump. Thanks for your prayers! I am so thankful he is "beefing up"...he actually feels heavier! Nana and our Pastor's wife, have noticed his weight change too, we are all excited, because of his belly being content (eating at a slower pace) he is overall more alert and at peace...praise God! :)

Ezzy and Daddy

On Saturday we went to a Farmer's Market to pick out some pumpkins. Ezzy and Daddy found a great looking pumpkin...when I told him that was his pumpkin, Ezzy smiled...can you see it?? He LOVES his daddy and we love these special memories of spending time together as a family!

a big boy ready for action!

feeling understood...

Two days ago we went for a Neurology appointment. Ezzy has them every six months, a check up, making sure he is getting as much assistance as possible. We really like his Doc and I always come prepared with a list of questions to ask and advice to learn. This last trip was a nice "get away" for Edwin and I. We had the two boys with us, and the girls were at Nana and Papa's, thanks! :) It is always nice to have the three hour drive there and back to chat and visit...I am so blessed that he works so hard preparing to be able to take the day with his family and that his job is flexible, allowing him to have time with his family.

As we were strolling through the hospital, I had a feeling overwhelm me, hard to explain, but I will try. While waiting in the waiting room, many parents and kiddos were patiently waiting to be seen. My hubby is always so friendly and chats it up with the kiddos that are near us. I smile and look at the moms. We kinda do a "glance" at each other's child and then kindly look back at each other, a "understood" smile is exchanged and I pray for the right words to come out of my mouth if our encounter leads to a vocal interaction. You see, even though no words have yet been said, we both have already "talked", an exchange of feelings understood and accepted. The Lord does bring about times when I am able to share the blessing of Ezzy's life, but sometimes it is only a smile exchanged. It is a good feeling to be understood and not feel like everyone is starring at your son. Being there kinda feels like you are part of a "club".

When I am there at Children's Hospital, I see a lot of sad things, often I see sick little kiddos being so lovingly cared for by mom and dad...and then poof, I am reminded of how blessed we are to have Ezzy, who does not suffer from being sickly, he is not dying, he is not on the verge of anything "bad" any more than a kiddo running down the sidewalk. Seeing these families puts my whole outlook on raising Ezzy into perspective. I am thankful for the reminder of how blessed we are.

On a note of update: Ezzy is doing wonderful, alert and responding to life all around him more and more! He is "smiling" more and I love to see him respond to his beloved family members. He is a tiny little guy and so we need to look into how we can "beef" him up :) I have a long list of calls to be making in order to set appointments up for him. I am thankful for the grace of God, His perfect strength that re-fuels my soul as I take it one day at a time...

Ezzy playing in his stander...

Swim time for Mommy and Ezzy

Summer heat brings on MUCH pool time at Nana and Papa's! We enjoy time together splashing around....Ezzy loves to be in the pool, in small doses! :)

Just Ducky...

Ez Man recently had a blast playing in his stander! We had some fun playing with duckies in water...he would push them in and love our response of encouragement!
He is so very cute and I just LOVE this guy!!!
We just returned from some annual check-ups. I have a list of phone calls to make in regards to setting up future surgeries and appointments. I love this job and consider it a privilege that I am Ezzy's mom. Someone recently joked that I need a bluetooth to make the calls on the road... :) NA! I think that it is so funny when someone is "talking to themselves"!!! Who knows, maybe one day!! HE HE...

Anyways, the updates are good as far as his back...the doc said that there is NO deformity in his back...so that is a PRAISE! We still need to keep a close eye on his spine though and continue to stretch him and "help" him keep it as straight as possible. He still has a "slump" in his back, but when we straighten him, he seems to enjoy the stretch, so we are thankful for that! :)
Our little guy will need eye muscle surgery and glasses! How CUTE will that be?!
So looking into the options for glasses is on my list...
He also will need new ear tubes...fluid is still hiding out behind his ears and so since one tube fell out, he needs a new pair. We plan to do both surgeries at the same time, sounds good to me! :)

I am so THANKFUL for the doctors that care for Ezra...as his mom and his voice, I still have to be determined. I am thankful for God's strength that gives me the wisdom to know what to ask for and yet how much to "go for" in his care.
I was recently talking with his therapists; they are so encouraging to me in raising and caring for Ezra. I am so blessed to have their input and advice and yet their concerned ear that listens to me.
GOD is good.

Working hard in his stander

Ezzy has been doing so well in his stander. Here I am stretching his arms, as his physical therapist is in our home helping us. We put on the tray for him to lean upon and he really enjoyed being able to take breaks and then straighten up again. His sisters were in and out of his room, and little brother was in his crib watching thearpy go on. His PT decided to do "ring around the rosies", so her and I and the girls all held Ezzy hands in a circle and did the famous song...falling down at the end of course :) At times Ezzy would scrunch down towards his tray! He too was falling down, it was so fun and the girls loved being part of his therapy time.

Melts my heart...

Thank you!

Thank you to those who watched Ez Man in his stander, for the encouragement and love you have sent across the miles to my little man! God is so good in blessing me with those of you who pray and cheer him on! :)

THANK YOU.

Ezzy has only used his stander that one time, due to the braces being a bit snug for him, leaving him with red marks due to the tightness of them. He has an appt. tomorrow and I will address this and hopefully have him fit for more braces, with that though, time will pass without the use of his stander. There is often hold ups in his overall care/therapy because of things like this, but I know God is in control and in His timing, will we start using his stander on a more daily based schedule. I will keep watching the video and be encouraged by his great response to feeling his legs in motion!!! :)

Thank you again....your comments and love is a blessing and sustains me!

I am blessed!

Brothers chilling together in Ezra's bed after bath time! Can you see the smile on Ezzy's face?! He LOVES interaction with his lil bro! :)

Ezzy, the Stander!

Ez Man is in his stander. This newest piece of equipment he has gotten gives him the feeling of standing upright. As you can see, he is still tilted at an angle until he gets a bit more comfortable with being completely upright. He kept pushing up with his legs when he felt himself slouching down! It was fun to see him respond and USE his legs! Praise God!

http://youtube.com/watch?v=O54ahfzZD80

Sweetly sleeping...

Ezra will often drift into a very deep sleep, a sleep that makes you smile, because he is at such peace. For those of you who have met Ezzy in person, know that he is often uptight and tense due to his very high muscle tone. So when he sleeps in such peaceful slumber, I enjoy watching him rest. The rest you see in this picture took place days ago after eating his dinner. The noise level was not at a low volume, actually there was commotion and life sounds taking place all around him, but yet, he was peaceful, content. Seeing him in such a state of contentment and peace made me realize that this pleasant peace is what God desires of our lives when we are trusting in HIM, when our mind is stayed on HIM, then we will have peace. He has told us that He has come into the world that we would have and enjoy peace; not only when things are going our way or life is quiet and "perfect", for there will never be a time apart for the craziness of life and the loudness of it all. So take a lesson from Ez man, who even in the noise surrounding him, opted to rest, to peacefully enjoy true God given REST; for God truly is the One who blesses him with the ability to rest....something that is not always easy for him to do...even more the opportunity to praise God and smile when his chest rhythmically moves to the rhythm of his peaceful rest.

"The Lord will give strength to His people; The Lord will bless His people with peace."

Psalm 29:11

Fit for a King :)

This past Monday, Ezra was "fit" for his new Stander. This piece of equipment will enable Ezzy to experience standing. As he uses his little legs, safely and snuggly in his Stander, he will begin to gain muscle in his legs, so that ONE day LORD willing Ezzy will walk! :)

After about 10 minutes of fitting his cute little body just right in all the straps and braces, the therapists and equipment guy lifted him upright. As you can see from the pics below, his eyes were bright and ready to take in life in his new position...STANDING! He was so marvelously ALERT and awake, it made me smile! I loved seeing him respond so wonderfully to his new equipment. I just received a message that his new feet braces that he will wear with his Stander are ready to be picked up. So soon, Ezzy will be "cruising"! This Stander IS on wheels that also has brakes, which is good with the hardwood floors we have within our home! Between Ezzy and Owen in his walker, a baby gate is a sure order for the stairway.

Our little Ez Man continues to teach us so much about God's perfect PLAN and POWER!

We PRAISE Him for the wonderful day of being "fit" for new equipment and for the genius inventors who have thought all these new contraptions up for kiddos like Ezzy. We are blessed and wanted to share a little about what is new in the life of our precious son...