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"The Special Mother" by Erma Bombeck

Several months ago at a neurology appointment with Jax, one of the nurses who has been seeing Jax since our first visit quietly closed the door behind her and preceded to hand me this article. She said that she keeps this article on file and gives it out to moms when she feels necessary. I waited until I got home to read it and I am so glad I did because it is a definite tear jerker. Some of you mothers with special needs children may have already read this article but if not it is beautiful.

(Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nealry 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?)
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to take notes in a giant ledger. "Armstrong, Beth-Son-Patron Saint, Matthew." "Rutledge, Carrie,-twins-Patron Saint...Give her Gerard, he's used to profanity."
Finally, he passes a name to an angel and smiles. " Give her a handicapped child."
The angel is curious. "Why this one God? She is so happy."
"Exactly, could I give a handicapped child a mother who doesn't know laughter? That would be cruel."
"But does she have patience?" asked the angel.
" I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she will handle it. I watched her today. She has that sense of self, and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not oing to be easy."
"But Lord, I don't think she even believes in you!"
God smiles. "No matter, I can fix that. This one is perfect, she has just enough selfishness."
The angel gasps. "Selfishness, is that a virtue?"
God nods. "If she can't separate herself from the child occaisionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see--ignorance, cruelty, predjudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing My work as surely as she is here by My side."
"And what of her Patron Saint?" asked the angel, his pen poised in midair.

God smiles. " A Mirror will suffice."

Therapy Update

Last Friday was by far one of the best therapy sessions I think Jax has had to date. He is sitting up so much better and he is using arms to push his upper body up off the floor. His trunk and arms are getting stronger! I am so proud of him.

We are currently in the process of getting approved for physical therapy at Siskin's Children's Institute in Chattanooga. The place where Jax currently receives therapy is downsizing so we are having to find an alternative place for physical therapy. Our therapist now will be joining Siskin in July so we are hopeful that we can continue therapy with her as soon as possible. Good news is we will be able to continue seeing the same speech and occupational therapists. If we do get accepted into Siskin it will be a little longer drive each week but hopefully we will be able to keep all therapies combined into only two days weekly. 

Sadness to Joy

Every now and again you can't help but just get in a funk. Last week was just that for me and for Jeremy. The entire week was a struggle to stay positive and not allow myself to be overwhelmed by the past and the what ifs. I can't change anything that has happend, I certainly can't fix it and I have no control over what the future holds. Each day just seemed to get darker and darker last week and it felt like the "hits" just kept on coming. Friday was the tip of the iceberg. Got not so good news about a certain situation, and then a piece of mail about that particular situation. Right after getting all the news and mail, I had to go to Walmart and had a terrible experience there. One that I am going to definitely write to corporate about. Don't tick off a mama when she has already been pushed to the limit. Upon leaving Walmart with my 3 children, two of whom were tired and hungry and who I promised to take to chick fil-a to play and eat, I did what any other mom would do and I called my husband at work to vent about all the junk that was going on that week. Of course, like any smart  sweet husband would do he listened, apologized and reaffirmed that if he could he would make it all better. I cried the whole way to chick fil-a and realized that there was no way I was in any shape to take 3 kids into an already chaotic playground to eat lunch. I sat in the drive thru and cried as I saw all the little boys running and playing. One dad was putting on his son's shoes getting ready to leave thinking to myself we may never have those moments with Jax. Then I saw a little boy just about Jax's age "toddling" around with a big smile on his face and I just about went over the age in my pity party when I heard a still small voice speak to me and say "you may not be having these moments now, but you don't know what My plan is for Jax. You would never know the power of a miracle if you never needed one. Though you may not be rejoicing over these things, you may have the chance to rejoice over even greater things that I have for you. Which would you rather have?"

I immediately asked for forgiveness for my lack of faith and for allowing myself to take my focus off of God and placing it on all the negative. That moment in the drive thru is one of many times that God has spoken to me throughout this journey and reminding me to keep my eyes on Him and trust in His plan. I snapped back to reality and took the kids to a local residence that has all kinds of animals for the community to visit. We parked and had a nice lunch. We fed the donkeys and I just made up in my mind that I was going to enjoy my children and the time that I was given right then.

I ran/walked my first 5K this past weekend. It was the color vibe run and a group of us ran in honor of Jax. All the proceeds were going to the Ronald McDonald house. Later that day I was playing with Jax and doing some PT with him. And once again it was these moments that remind me that God is in control and that every milestone with Jax is a celebration and victory for him. He has a determined spirit about him that I can't explain. I know that there is a strength inside of him and a joy that is expressed on a daily basis. A sweet friend was visiting with us and was there when Jax pushed himself all the way to this position. I can't tell you the amount of joy and excitement that was felt in this moment in time but it was an amazing end to a not so amazing week. Hopefully the expressions on our faces will convey some of that joy with you.

Church was so good today and Pastor Stan had a great message about Spirit Empowered Living. If I allow myself I get extremely overwhelmed at the task before me when it comes to Jax's caregiving, because if I had to do it on my own I would fail miserably. I am inadequate on my own to care for him the way he needs but with God working in me I am more than adequate. I am trusting in God's grace, mercy, love, guidance and wisdom when it comes to raising all my children but especially with Jax. He is not a typical child and without God I would collapse under the enormous weight and burden of this responsibility that has been given to us. 

Tuesday Therapy

Jax had some occupational therapy this morning and he did really well. He seems to be getting stronger everyday.

Look at me mom!

I'm standing! Today Jax got his prone stander so after getting him all strapped in we turned him up and he was able to bare weight on his legs. I was so proud of him! He never once dropped his head. He held it up high and looked around and as you can see appeared to be pretty pleased with himself!


I do have to admit for about 10 seconds I thought "ugh I hate this" but my pity party ended quickly after seeing Jax's sweet smile. No time for sadness. His physical therapist reminded me today how every accomplishment is another victory for Jax. We might not be celebrating milestones like we did with our girls but let me tell you that this mama will never again look at another smile, another reach, another focus, another squeal of excitement or any other amazing accomplishment the same ever again. Jax teaches me everyday and I am proud to be his mommy, and humbled that God would see us fit to be entrusted with such a precious soul.

A Little Occupational Therapy

Jax has been receiving occupational therapy twice a month since February. Little by little we see him getting a little stronger.

Zephaniah 3:17

He will take great delight in you Jax. The Lord will rejoice over me Jax with His song and He will quiet me Jax with His love. --Zeph. 3:17

It's amazing to think that an all powerful God would take delight in me. Just as I delight in my own children and speak praise over them so does our Heavenly Father speak praise over us.

I found such joy the other night in the routine task of giving Jax a bath. We played in the water for a bit after his bath and he LOVED it! I pushed him around on his bath pillow letting the water flow all around him. He had a huge smile that lit up his whole face. When it was time to get out, Jax let me know right away he was not happy. His frustration and discontent made me smile because I was so delighted that he was being vocal about something. He kept making all kinds of squeals and yells. I knew then that he liked something and was mad when I took it away. Little things like this bring joy in the dark hours of the day. Even though I knew he was frustrated I delighted in the fact that he was showing emotion.

Peace for the journey

 My son's affliction is like the enemy staring at me right in the face every morning, and every day I have to remind myself with the word of God that I must not succumb to that fear and intimidation. Every day I have to find life where it feels there is only death.

Today has been one of those days. You know that day when you wake up and the world just doesn't seem right. Nature might be all aglow with heaven's sunlight but your soul feels weary. It was a darker day. One that I haven't had in awhile. I found myself feeling anxious, overwhelmed, fearful and just plain sad. I was giving in to today's battle. I give myself these days from time to time. Days to have a good cry. The tears somehow seem to cleanse my soul, my spirit.

I felt like David today in Psalm 13 when he wrote or rather asked God--"How long, O Lord?" Will you forget me forever? How long will You hide Your face from me? How long shall I take counsel in my soul, having sorrow in my heart daily?" And though David questions God and feels as if God has forgotten him in the end he finishes with telling God that he still trusts in His mercy and his heart rejoices in His salvation.

I have been reminded once again on this journey that it is imperative to take one step at a time. If I allow myself to to think too far into the future I become overwhelmed and fearful of the tasks and challenges that are not even yet a reality. I have to live in the moment and give thanks for God's present mercies and in doing so I can rejoice in His salvation. He will give me strength and bless me with peace.

I pray many things over Jax but one thing I pray for every day besides healing is that God would be merciful to him. Regardless of how His mercies are manifested, I must trust in the sovereignty of God and continually praise Him.

Forgot to Post This

 I had a pretty cruddy day this past Friday. Mommy and I drove to Chattanooga in the morning for my two doctor appointments. I had to visit my neurologist and my eye doctor. While we were in the waiting room at the neurologist I had a mild seizure that last for about a minute and 15 seconds. Mom and Dad have been concerned that I have been having breakthrough seizures so I guess this was the proof. My doctor decided that because I have gained weight that my medicine is no longer within a therapeutic range so she increased my phenobarb again. This is the second increase since September. The doctor also wanted me to have an EEG done that morning but I had another appointment to be at so I am going in the morning for my test. I may be having what the doctor says are infantile spasms.

Right after the neurology appointment my mom drove me across town to the eye doctor appointment which was pretty uneventful except they like to drop this stuff in my eyes that makes my eyes get really big. But other than that the eye doctor said my eyes are healing well, my retinas are attached and look healthy, and when I come back in January they will be able to determine more of where the position of my eyes are going to be. This is what I thought of the doctor appointments. Those things wear me out.