The Last First

We made it through September. Last month was a time of celebration, reflection and bittersweet moments. Jax turned one on September 13th. A day a year ago we weren't even sure we would be celebrating. He is our last baby. His birthday will be the last first birthday we will celebrate in our family.

The first birthday is one that is anticipated and usually celebrated with grandeur. Over the last six months I struggled with what to do for Jax's birthday. I questioned if I should even have a party at all. It was hard not to focus on all the milestones Jax had not reached. I wondered what is the point in celebrating because this is not the life I want for us or my son. I felt as if I had nothing to celebrate. But once again after soul searching and putting myself back in check I realized that I do have a reason to be thankful. It may not be the things I thought we would be celebrating for Jax but we had a reason to celebrate none the less. We have a son. A beautiful GIFT from God. We weren't able to celebrate lots of milestones reached but we were able to celebrate his life. To say living with a child with special needs is difficult is an understatement. It is so hard at times to describe to someone what it is like and how it feels. I came across a woman's blog one day and she shared a story about a woman's description of living life with a special needs child. The story, Welcome To Holland, brought tears to my eyes, and really was the reason I started looking at our situation in a different way. Does it mean I don't have the negative thoughts and self pity at times, absolutely not. But it did, however, shed some light on my perspective.

Back to birthday stuff. I LOVE planning parties and was so excited to finally plan a boy party! You may have seen pictures posted on facebook, but I decided to have a "Little Monsters" party for our little monster, Jax! If you have ever met Jax, you will agree that he is so SWEET and LOVABLE. You can't help but want to snuggle him and kiss his chunky cheeks. He can also be a down right stinker at times as well. So the theme felt like it fit not to mention it was so much fun to plan. The pictures speak for themselves.

Hope you enjoyed looking at some of the pictures from Jax's Party. There were several more I wanted to share but for some reason blogger is not uploading them correctly.

Jax had his one year well visit last week. I am happy to report that he is FINALLY registering on the growth chart for his weight. He is at the 5% for his weight at 19 lbs; still small but we will take it. As for his height and head circumference they are still not registering on the chart but he continues to grow and make his own curve. He is now 27 inches long.

Thank you to everyone who stops to read our blog and keep up with Jax's progress. Every time I hear about someone reading I am thankful that there are those of you who truly care.

For my sweet Jax, if you ever are able to read these entries one day remember that you are loved!

Praying for Rain

The other day I was looking back through emails and messages that we received over the last year regarding Jax. It must just be that time of year since we are approaching his first birthday and the anniversary of when our lives changed forever. So many of you wrote, called, prayed, sent things and to this day all those acts of love are not forgotten.

One particular email I came across was one sent to me by my sister inlaw back in January. She shared with me a devotion about Elijah. The devotion meant something to me today as it did back then. I will just share the devotion with you.

"There is nothing."  -I Kings 18

Elijah was a man who hoped perfectly; hoped against hope until the abundant answer came.  He continued, in the very face of darkness and perplexity, to expect, because the very God of hope lived in him and expected through him.  And he was not ashamed, for it came to pass the seventh time his servant said, "Behold, there ariseth a little cloud out of the sea, about the size of a man's hand," and in a little while the heaven was black with the clouds and there was a great rain!

Canyou count God faithful when only the still small voice speaks?  When there is neither wind, earthquake, nor fire?  Can you start when you see the cloud no bigger than a man's hand?   Can you say:  " There is nothing," but I wait on Thee.  My mind is peculiarly dark regarding the way I am to take, but Thou knowest.  Unto Thee do I look up!"

"There is nothing"- though the raindrops needed sorely and so long

Have been promised by Jehovah, by the Father true and strong.

And the sky is blue and cloudless, and the earth is parched and dry,

Yet no showers are forthcoming from the reservoir on high.

"There is nothing-" but the prophet knows and trusts his Master's word;

He is not a senseless idol, but the mighty, powerful God.

He has seen His wondrous working, he believes Him faithful still;

So he humbly waits in patience for Jehovah's perfect will.

"There is nothing"- oh, how often doth the enemy declare,

Nothing for your constant wrestlings; nothing for your cries and tears.

And the faithless heart says

"Nothing," through deceived she ne'er has been,

For the little cloud so longed for, at the seventh time is seen.

"There is nothing,"- but there shall be: God is still the Great "I Am."

He is NOW Almighty, faithful, and forevermore the same;

And the tears, and cries, and wrestlings, have been recorded on high;

Not forgotten, nor neglected, to be answered by and by.

-James Boobbyer

"Get up, eat and drink; for there is a sound of abundance of rain!"

There are so many times I feel as if I hear that still small voice like I have many other times in different situations but this time it is over shadowed by the loud reports ("facts") from the doctors. The tears of desparation that I have cried have seemed to go unnoticed by God. I want to believe in that voice I hear but fear overwhelms my soul most days. It is the darkest place I have ever been in. I cannot even begin to describe what all this tragedy has done to our lives. 

However, it is Words such as this that remind me that just maybe there is still hope. That there is still a compassionate and loving God who really does care and hear this mother's heart for her only son. I am so afraid to hold onto faith and the unseen for fear that it will bring disappointment. I pray that I can have the faith and hope of Elijah and believe until we SEE the cloud the size of a man's hand that brings with it an outpouring of healing for our sweet Jax. 

Nine Month Update

Since our last post Jax had his nine month well visit which consisted of his normal weight check and measuring. He also had to get one shot. Normally he would have gotten two but because of his seizure activity back in the spring he is not allowed to have the DTAP until he is seizure free for six months.

Jax is still taking 1tsp phenobarb a day and 2ml of kepra twice a day to help control seizures. Since he started on the kepra we have not seen any seizure activity and hopefully this will continue as his body naturally weans off the phenobarb as he gains weight. At his last well visit:

Weight: 16 lbs 2 oz--he is in the 5th%
Height:  25 5/8"--he is in the 3rd% (still keeping an eye on his growth)
Head Circumference:  15 1/8"--still not registering on the charts but the size of his head is STILL growing and making progress.

Our pediatrician said that in spite of all Jax has been through and the prognosis given he was pleased with Jax's growth. He is continuing to grow in all areas. Some are slower than we would hope but GROWING nonetheless. Jax is going to be 10 months old on July 13th and developmentally he is about at the 5 month mark an improvement from his last 4 month mark.

It is all bittersweet in that you want so much to see your children healthy, normal and thriving but in this journey we have been learning to grab hold of even the smallest signs of progress and hope that we will continue to see improvement.

Jax has been doing great in his therapy sessions. He actually grabbed hold of a toy on his own this weekend and he has been showing signs of possibly trying to roll over from back to belly. When he is in a good mood, which is mostly in the mornings, he has been smiling a lot more and I even heard him laugh a little. Although it was not the contagious belly laughter that babies have it was a little chuckle and I will take even that!

I finally caught some videos of him smiling and having some play time with Eden this morning. Enjoy!

Looking back at this video I should have just let the boy have a lick of the lollipop but I am so paranoid of germs. Afterall, it was an organic lollipop that should make it okay, right?!

A Wink and A Smile!

I know we have posted some deep heart wrenching things lately so I just wanted to share a little bright spot from today. There were days months ago that we didn't know if we would ever see Jax smile responsively. A seemingly minor milestone for most babies has been a major one for Jax. Every time I see this face my heart melts and it gives me hope.

Re: Breaking the Silence II

You are not alone...
The road you are on is the one I have chosen for you.
You trust Me to hold the very Universe in order, but
you let the seed of doubt begin to sprout. It's vines growing deeper as days pass.
I am your guide...
Surrounded by darkness, you can't see the light, yet I am there.
Am I not the one who healed the blind? the lame?
Trust Me to lead, even when you can't see what is in front or behind you.
I am your light...
The fires are hot. The hammer is hard. It must be this way.
Do you believe I would forge something that is too weak to use?
Do you believe I would make something that isn't perfect?
I am the Maker...
In your very words you say you believe I hold the Sun, Earth, and
Universe in My palm yet, you worry about the ones you love the most.
Can I not also hold them?
Can I not also give them exactly what they need from Me?
Can you let worry drown, and trust that I will keep them afloat?
I am Love...
You say you trust Me, you say you will follow Me, and you say I am your strength
yet, you are contemplating despair while I'm educating you with hope.
It's so ironic, you say you want to believe, trust, follow, and hope in Me.
Then don't change who you are because who you are is how I made you to discover Me.
I am your Creator...
I know you are weary, worn out, and feel like you are bleeding on the roadside.
You may feel alone, robbed, and full of despair, but I won't let you slip away.
On this road you will learn what it means to receive the very hope that you keep denying.
I am your hope...

Trust Me.
Believe in Me.
Let worry die.
Let despair rot away.

Let Me be your rest...

Breaking the Silence II

I've stood by a long time and wanted to write something. I just didn't know what. I think i know now. This is a conversation between me and God. It's the only way i know how to get what i want to say out of my complex thoughts. For me i know can be completely myself with Him. So it begins...

I am not alone...
It's a thought that is hard to swallow considering the road I'm on.
I believe you hold the Sun, Earth, and the very Universe in Your palm,
but in the deepest part of my mind I question the end result of Your actions.
Give me rest...
Are we destined to be in darkness for the rest of our lives?
We walk like the blind, feeling our way through this like people without eyes.
You are my God, my Creator, my King. You know me to the very core of who I am.
Give me rest...
The fires of the forge burn. The hammer striking is now a dull pain, no longer a sharp sting.
The smell of the smoke is now familiar, comfortable even. What am I, nay, What are we becoming?
A Sword to pierce the very heart of Darkness? A tool for binding wounds? Something unknown?
Give me rest...
You know me. You know above all things, i will take your hand as you lead, even to the very fires of hell.
We are tired and numb, broken and worn, yet we still move. I know You are the unseen strength.
What then can i say Oh Lord? Do i question your motives? actions? No, I trust You.
Give me rest...
We are weary, beaten, bruised, and tired. There is beauty in suffering. You know this more than anyone. It must be painful that so many give up, so soon. You know I believe You have a purpose in all things. I feel ashamed when I can't hold on, yet I believe that is when you are holding me. Help me, Heal me, Reform Me.
Give me rest...
Should my flame be snuffed out before my time, Send a smile to my daughters, tell them to never lose the joy of being a kid at heart. Tell my son I'm so very proud of him, he will always be an inspiration to his father. Tell my wife I adore her. She is beautiful and kind, and is the strongest person I've met on this earth.

I trust You.
I don't understand why we walk in this darkness, but
I trust Your decisions.
I'm scared this darkness will snuff out the light of the ones I love the most, however
I trust Your involvement.
I humbly ask of you one thing.
One thing that I believe could alleviate some of the pain and darkness we are so familiar with.
One thing that I believe you could grant if you saw fit, however not my will, but Yours be done- Forever and Ever.

Give me rest...

Jeremy

The Heart of a Mother

I think for the last 9 months I have been operating in survival mode. Pushing through each day and trying not to succumb to the overwhelming fear, disappointment and sadness. I hate to be so doom and gloom but this is how I feel right now in this journey. It is extremely difficult to stay positive and optimistic. I wake up each day and walk through each day because I have to not because I want to. The hardest part is walking this journey with no joy for life anymore. I feel so weak, so defeated, so alone, so angry and the list goes on and on.

Have you ever walked in the valley of the shadow of death? It sucks! There are no other words to describe it really. It is just the honest truth. Jax's injury and his condition is truly this shadow that has been cast over our lives. It is always the pink elephant in the room so to speak. We have been pushed off the mountain or hillside into this deep, dark valley where I am afraid there is no end. It is a valley that I fear we will walk until we take our last breath.  I am struggling with how to find any joy or hope again while facing the possibility that Jax may never be healed.

I know that the joy of the Lord is our strength, and I have read all the scriptures about the kind of peace and comfort that only God can give in times of great trial. I have experienced His love and compassion before but this time it is different. I should be able to go to Him with all of my cares and worries yet I find myself  unable to find rest and comfort in Him.

If you want to be real about it all, I have questioned not necessarily the existence of God but rather His involvement in our lives. All that I believed and all that I experienced before now has been shattered. I really don't know what to believe anymore. The questions I have run deep. On a daily basis I ask myself why God? What is Your purpose in all of this? Is there even a purpose? Is it just part of life?

Today was a hard day for me. Every day brings its challenges some harder than others. I face heartache everyday when I watch my son not be able to do the things a normal 9 month old baby should be doing. It breaks my heart when I see young boys running, playing, laughing, hugging their moms, etc. The pain is so deep that I just don't know how to rise above it. I may never hear my son laugh, he may never utter the words I love you mommy, he may never be able to play with his sisters, he might not ever be aware of his existence.

I am in a very dark and lonely place and my soul has found no comfort. I know there are people who have far worse circumstances. I know that I should probably count it all joy. But this is where I am. This is the lot my family has been given. The fact of the matter is there is no peace, no comfort and no joy in watching your child suffer. You may think differently of me now that I have expressed some of my feelings. But honestly that is okay. I need to be honest. I need to vent. The heart of this mother is silently screaming.