Beautiful day......at what cost?

My son James has Duchenne Muscular Dystrophy. It is an ugly, ugly disease that weakens the muscles in his body over time. It will change his body, change his future, and it changes the way I look at him. This hit me hard the other day.......

James and Jeanie were at the playground having a great time. James was in a terrific mood! He was climbing, swinging, going down the slide, and trying so hard to keep up with Jeanie. There was one "climbing thing" that he was determined to conquer. With mommy's help he climbed up this wall 5 or 6 times. He was so proud of himself, and I was enjoying watching him have fun.

After several trips up the wall I could tell he was tiring. At this moment the way I was looking at him changed. Instead of simply seeing my beautiful little boy, I was looking at a little boy with Duchenne. As I watched him play, I wondered what these 15 minutes of fun were going to cost him. For a few moments I didn't see him playing, I just saw the working and straining of his muscles.

And again a few days later. The whole family went to the park to play and have a picnic. We went for a walk in the woods and daddy Tony and I had to carry James part of the way. When he was in our arms we could tell he was worn out. As we walked I craddled him, thinking he would wiggle in protest. Instead he closed his eyes and let me carry him like this for a few minutes. As much as I loved holding him close, again, Duchenne crept into my mind. This was such a fun day for all of us!!!! But at what price for my James?

I worry for James, but at the same time I trust in the plan God has for him. This gives me comfort beyond words.

Pool time

Almost 2 years ago my parents bought a house with a pool. Who knew what an amazing blessing this pool would be for our family and out friends. This pools has helped strengthen Tony's muscles and we can see how strong he is getting. He likes putting his face underwater, "jumping in" and he will kick and move his arms at the same time. Wow! And the little twins love floating around. Jeanie is like a little fish! She kicks her legs and moves herself around like a pro. She has no problem going underwater, and loves to be tossed! James is just getting around to kicking, and just floats wherever the water feels like taking him. For me, when we are in the water, there is a feeling of "normal". The kids, especially Tony, are all fairly independent. I can sit back and just watch, just enjoy the moment. Their smiles, giggles, splashes. No worries in the water. I thank God for these little moments, crave them. I love this pool!

Mommies need hugs too

I have been blessed this week to be on the receiving end of some sweet, sweet affection from my little sweeties. At some point, each of my children have come to me, for no real reason, and put their little arms around my neck and given me a hug. And have even added a little kiss to go along with this. Oh, how amazing was this feeling! As I was in the midst of one of these tender moments yesterday, it just dawned on me that mommies need hugs too!

Mommies need hugs. To be honest I had never thought about this before. My thoughts always to go making sure my children are hugged a hundred times a day, and that they hear "I love you" a hundred times also. Who would have ever thought that I needed the same from my children? I take care of them. I watch over them. I am responsible for their little lives. But here I am needing their hugs.

Or maybe it was just that I needed their affirmation. This simple act of a hug is a sign of trust. This is their way of acknowledging that mommy is here to take care of them, watch over them. Maybe this is their show of gratitude just for being mommy.

So this of course makes me think about my heavenly Father. Do I make it a point to show Him my gratitude for taking care of me, watching over me? Do I hug Him? Sadly, not enough. He has given me the ultimate gift, everlating life. Nothing I could give my children on this earth could ever compare to this! Then why am I not thanking and praising Him with every breath I take?

"Let all things their Creator bless
And worship God in humbleness
O praise Him, Alleluia!"

from "All Creatures"

http://www.youtube.com/watch?v=Yv25FN7AqVM&feature=related

Oh thank you heavenly Father. For showering me with blessings too numerous for me to even fathom. Thank you for the forgiveness you so readily give, the the blood of your Son shed on my behalf, and the promise of everlasting life. Thank you for the little moments of love being shown by these precious children. Thank you for allowing them to remind me that we all need to be shown love and gratitude. Lord, I just want to raise my hands and sing my praises to you.
I love you Lord
and I lift my voice
to worship You
Oh my soul rejoice!
Take joy my King
In what You hear
May it be a sweet, sweet sound
in your ear!

amen

Zephaniah 3:17

I can't believe it has been a month since my last post. It has been a bit of a rough month, but we have survived. Tony and I have both been sick, Tony was in a car accident which jarred his body pretty good, and James had a "purple" spell. Seems little Tony and Jeanie are the only ones to make it unscathed through the month of March!



I have had a verse put on my heart that I can not shake and don't want to! Now, I am not a big memorizer, but this is one that has attached itself to my mind and I repeat several times a day. It is Zephaniah 3:17 "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing" (NIV - it makes a difference!). PRAISE GOD!!!!!! This verse to me encompasses the love and compassion God has for us at every moment of our lives, good and bad.



1. "The Lord your God is with you". That is it. It doesn't give parameters, such as "when you are praying," or "when you are singing worship music," or "when you are helping a friend," or "when you are cleaning the house with a joyful heart." It also does not give a moment when He is not with us. What a humble thought to know that my Father in heaven is with me at any moment, and every moment.



2. "He is mighty to save". Again, no parameters. He is strong and powerful and has the ability to overcome any challenge. So if He is with me, and He is mighty, there is nothing I cannot withstand. I am embarassed to think of how many times He has saved me. How many times He has wiped away my tears, wrapped me in his arms, and whispered words of love and encouragement. There is no way for me to know how many times He has saved me from Satan and myself.



3. "He will take great delight in you". This part makes me giddy. God, my heavenly father, creator of everything, will take delight in me? Really? Really!!!! What will that look like? What will it be like to have Him delight in me? And not just regular delight, but GREAT delight. I think of myself as a child, eager to do something that would make my mom give me "that look". You know, THAT LOOK that tells a child they have done something right, something that has made you so proud of them that words can't express your joy in what they have done. This is how imagine it. Making my Father proud - hallelujah!



4. "He will quiet you with His love". My 5 year old Tony woke up crying the other night at 2am. I waited a few minutes to see if he would fall back to sleep, but the crying only intensified. I went into his room to find him shivering with a fever. I immediately brought him into my bedroom, laid him down beside me, and wrapped my arms around him. His crying stopped, and within 5 minutes he was back to sleep. Was it the different bedroom, the different bed, the words that were spoke? No, it was my love that gave him comfort. When our children are upset (bad dream, broken toy, shots, scraped knee), they seek us out not for what we will say, but the comfort and love they will feel in our presence. Same with our Lord. He comforts us in this same way. The love and compassion He has for us in every situation, big or small, can comfort and soothe us like nothing else. All we have to do is allow ourselves to be comforted by Him, and not seek comfort in the world.



5. "He will rejoice over you with singing." There are songs we sing at church that move me to tears. The chorus of one such song goes, "Oh no, you never let go, through the calm and through the storm. Oh no, you never let go, in every high and every low. Oh no, you never let go, you never let go of me." I get chills everytime we sing this because God has always had me by the hand, in every good and bad situation, when I wanted Him there and when I turned my back to Him. Now, if I feel this good about a song in church, how AMAZING will it be when I get to hear God rejoice over me with singing?



This verse goes to all He does for us - He is with us, He stands strong for us, He delights in us, He comforts us, and He sings for us.



Heavenly Father,
I thank you so much for this day you have given. Thank you for the opportunity to be with my family one more day. And Lord, I just thank you and praise you for your words of love and encouragement. I pray you would continue to show me your word and speak to me of your love.
Amen

4th, 4th, 4th

Saw this idea on a few other blogs and loved the idea. 4th picture in your 4th folder. I have folders in folders so I had to go one 4th farther just because of the way my pics are organized. Anyway, it took my to the year 2007. Tony was 3 years old. Gosh, he looks so young! I miss that baby face!!! Anyway, here is the picture taken February 1st.

I think we were using an electric toothbrush with Tony for the first time. Apparently he liked it because he smiled the whole time daddy brushed his teeth.

Such as simple post - it feels strange to just leave it like this. But here goes.........

As God sees him

I worry. I know I am not supposed to worry because of the love God has for me. My head knows this. My head knows God has the ultimate plan and no amount of worry, anxiety, fears, or tears will change the glorious plan God has for me or my children. Yet, I worry.

I think about Tony and the road he will go down as his life plays out. He is such a sweet little boy with not a mean bone in his body. He is the pitcure of innocence. Literally, he does not understand meanness. If someone was purposefully doing something to hurt him, it would be lost on him because "mean" is a concept he does not understand. At the same time, he lacks some of the social graces other children his age have developed. If he sees something he likes, he will try to take it (like he was a 2 year old). He does not pay attention to personal space - he sits and stands too close at times. His movements are awkward. He is non-verbal. So I worry.

I worry about how he will be recieved by other children. I worry about him making friends. I have heard, "I don't like Tony becasue..." from children and it breaks my heart. I am just glad it is something my baby boy does not comprehend. I worry.

I know God is watching over Tony and has a beautiful plan for him. Although I should know better by now, I still need reminders of God's love for His child.

So, just when I am beside myself with worry I hear stories from parents that lift my spirit and give me so much hope for Tony's future. "Emma is praying for Tony." "Adin prayes for Tony." "Carter talks about Tony and what he does at school everyday." "Audrey says she might want to marry Tony." "Lily just loves Tony." I am filled with hope to know there are these precious little children out there with the ability and willingness to see past Tony's shortcomings. This can only come from a loving God!

I feel these children have a gift to see beyond what is in front of them. How do they do it? Can they see Tony's spirit? How do they ignore and look past what others are blinded by? I don't know. But I hope it is a gift they never lose or ignore.

These children have blessed my life and provided yet another example of God taking care of me. God is so much larger than life, yet He works through these tiny people. How can I worry when God continually reminds me that He is taking care of His children? I can't. I know God will always provide Tony with someone who sees him as God sees him.

Thanks

O give thanks to the LORD, for He is good; For His lovingkindness is everlasting. I Chronicles 16:34


Thanksgiving Day has come and gone and I did alot of thinking about all that I am thankful for. This list could go on and on and on and on..........


I am thankful for my Lord Jesus Christ. That He chose me as His child long, long ago!


I am thankful for my salvation. That Christ came and walked this earth to pay the price for my sin. Salvation is something I do not deserve, but has been given to me from a Father who loves me unconditionally. For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord. Romans 6:23


I am thankful for my amazing husband. He is my best friend, my support, my provider, and an amazing father to our children. I am ashamed to say that it has taken me many, many years to really see just how amazing he is. I think as a wife it takes a certain level of maturity to get past ourselves and our selfishness and see our husbands as the Godly men they are trying so hard to be. I am so fortunate that God blessed me with a husband who wants to serve the Lord and live a life of integrity in all he says and does. He understands that he will have to one day stand with me before the Lord and take responsibity for us. This is not a responsibility I would want! I love watching the faces of our children absolutely light up when he walks through the door and says hello. There are few things in this world to match this pure joy. They know daddy loves them, and will always take care of them. I know this feeling.


I am thankful for my children. I am thankful for every diagnosis, doctor appointement, therapy session, and piece of medical equipement that has come our way. I know that every obsticle we face only serves to make us stronger and helps to build our testimony. I am thankful for the smiles that are beautiful beyond description. The bright eyes that sparkle with wonder and excitement. The littel hands, some steady and some not, that are so soft and have the ability to communicate needs. I am thankful for every little squeal that comes from their mouths. My heart melts every time I hear "ah la ya ya ya" which translates to "I love you mommy".

I am thankful for my family. My mom and (step) dad are amazing, generous people. At this moment, I have no direct family living anywhere near me. I am dependent on my in-laws and friends to give me a sense of family. I have been able to develop several close friendships and these wonderful women are sisters to me. Not by blood but from the heart. This part of my family is so special to me because there is a closeness that we have chosen and developed, not simply because of our last name. I am so thankful the God has surrounded me with love.

I look around at my home, the pantry in my kitchen, my closet, my cars in the garage, the living room floor covered with toys and I am filled with gratitude and thanksgiving that God has gone above and beyond my family's basic needs.

I am thankful to live in a country that allows me to practice my religious beliefs free of persecution.

I deserve none of this. I am so thankful for God's love, grace, and forgiveness. It is easy to see His love everywhere I look in my blessed life. And I am thankful.