I have seen my middle son be taken off to surgery more times than I care to remember. The first time was when he was only 6 weeks old (for pyloric stenosis), then there have been multiple sets of ear tubes and 4 more surgeries to try and get rid of the cholesteatoma (cyst) in his right ear. If you can believe it, he's actually had more surgeries than his sister.
We are now finding ourselves facing a 5th surgery on his ear. Over the past week we have found out that his hearing is the worst it has ever been. He has severe conductive hearing loss in his right ear. Doctors still think they can fix all this, but to be perfectly honest, after dealing with it for 3+ years now, we are disappointed and frustrated to say the least.
Jacob's ear is definitely a complicated case that doesn't play by any of the traditional rules. We know his hearing will never be in the normal ranges in that ear, but right now he can't hear anything at normal conversation levels. You literally have to be yelling at him for him to be able to hear you. Now he hides it well because thankfully his hearing is normal in the left ear, but if you are standing behind him, to his right or if there is any background noise my boy can't even hear me calling his name.
Just this week I have seen the first signs from Jacob that he too has had enough. This kid that has endured all these surgeries along with 4-6 week recoveries in which any and all activity is completely out of the question has done so with no complaints and an amazing attitude. Even last week, when we received the news that the latest surgery was unsuccessful and his hearing is at an all time low, he saw tears in my eyes and he said, "What's wrong mama?" My response was that I just want this to all be fixed for him that I don't want him to have any more surgeries, or be in pain or struggle anymore with his hearing. His response to me was, "it's alright mama, I'm ok with it."
This week, however, has brought a whole new set of challenges. Seeing him emotional over possibly needing a hearing aid while at the same time wondering if kids at school will make fun of him has broken my heart. He is so kind toward others and it just kills me to think that someone would say something unkind to him, even though I know that's a real possibility.
We are all so incredibly frustrated and just sick to our stomachs at the thought of another surgery for Jacob and another 6 weeks of no activity. He just got off restrictions from his last surgery a month ago. This is a big deal to him, so it's a big deal to us. Praying for his heart, his character and just the way he handles this whole situation that God would be glorified. It's such a difficult thing to have to deal with at such a young age, but we know God is in control and has a plan and a calling on Jacob's life.
We appreciate your continued prayers.
Thursday, June 28, 2012
Monday, June 25, 2012
Warmin' Up
Yay, the pool over at Grandma and Grandpa's has warmed up and SK had her first swim of the season over the weekend.
Sassy had the biggest smile on her face, kicking her legs some, holding her head up while being supported by pool noodles and just hanging out in her hot pink float. She likes the activity of her brothers and her cousins surrounding her in the pool and her face breaks out in huge smiles each time she gets splashed by a cannon ball off the diving board.
Since it was her first time in the pool, her brothers just couldn't leave her alone. Each one took a turn taking her around the pool in her float. No matter how rocky the ride got you could tell she loved every minute of it.
It's something different for her to experience and I'm so glad she enjoys it. Sweet girl has her very own reclining chair to dry off in out by the pool so she doesn't miss any of the fun. Oh and can I just add how much I am loving the tankini this year for SK. I have never been a fan of the bikini for girls anyway and the tankini makes tube feeding poolside a cinch, without showing all the goods, you know?
We're lovin' our lazy pool days. Thanks for checking in on us.
Since it was her first time in the pool, her brothers just couldn't leave her alone. Each one took a turn taking her around the pool in her float. No matter how rocky the ride got you could tell she loved every minute of it.
It's something different for her to experience and I'm so glad she enjoys it. Sweet girl has her very own reclining chair to dry off in out by the pool so she doesn't miss any of the fun. Oh and can I just add how much I am loving the tankini this year for SK. I have never been a fan of the bikini for girls anyway and the tankini makes tube feeding poolside a cinch, without showing all the goods, you know?
We're lovin' our lazy pool days. Thanks for checking in on us.
Thursday, June 21, 2012
Girl Time
Absolutely love this!!!
No, SK still hasn't been in the pool yet, but when our friend showed up in the same bathing suit as SK you know I couldn't resist taking their picture.
Yay for some girl time, SK doesn't get much of that around here. Thanks for checking in on us.
Monday, June 18, 2012
Let me be singing when the evening comes
"Let me be singing when the evening comes." As we sang those words yesterday morning in church, I felt a huge lump well up in my throat. I thought to myself...here I go again...I have cried enough for a lifetime over the past 4+ years. I'm tired of crying, so I tried to hold back as best I could the flood that was fixing to soak my face. I've actually become pretty good at it...did I mention that I'm tired of crying?
However, as the day went on I couldn't get that one line from the song "10,000 Reasons (Bless the Lord)" out of my head. We really don't know what tomorrow will bring. I know I didn't think my world would be so radically changed in the early morning hours of November 3, 2007. I didn't know what that day would bring for our family...that our baby girl would be clinging to and fighting for a different kind of life than we could have ever imagined.
On good days and on bad days, on days where worry, anxiety and fear threaten to cripple me, "Let me be singing when the evening comes." On days when we receive difficult news, I will remember the Lord's faithfulness and love. In Him there is joy and peace and in Him there is hope and healing. As the song says...
However, as the day went on I couldn't get that one line from the song "10,000 Reasons (Bless the Lord)" out of my head. We really don't know what tomorrow will bring. I know I didn't think my world would be so radically changed in the early morning hours of November 3, 2007. I didn't know what that day would bring for our family...that our baby girl would be clinging to and fighting for a different kind of life than we could have ever imagined.
On good days and on bad days, on days where worry, anxiety and fear threaten to cripple me, "Let me be singing when the evening comes." On days when we receive difficult news, I will remember the Lord's faithfulness and love. In Him there is joy and peace and in Him there is hope and healing. As the song says...
"The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes."
Father God by Your hand we live and breathe, by Your hand we have been blessed beyond what we deserve. May we be mindful everyday of Your goodness and mercy. Guard our hearts, minds and mouths that we honor You with what we say and do.
Psalm 31: 21-22 "Praise be to the Lord, for He showed me the wonders of His love when I was in a city under siege. In my alarm I said, 'I am cut off from Your sight!' Yet You heard my cry for mercy when I called to You for help."
Thursday, June 14, 2012
If you could see...
If you could see how big her smile is then you would never say that she is sad.
If you could see how her face lights up around her brothers, then you would never say that she can't express herself.
If you would look deep into her eyes, you would know she hears you.
If you could see into her heart, you would know how big she loves.
If you could have seen her when she was born, you would know how much she's grown.
If you could see her sleep, then you would know she is able to find peace.
If you could see her when she's sick, then you would know what a gift every healthy day is.
If you would care for her, you would know what a challenge she can be.
If you could see her, hold her, touch her and talk to her you would know what a miracle she is.
If you could see her then you would know the closest thing to unconditional love this side of heaven.
If you could see her brothers, then you would see compassion and love in action.
If you could see our family, then you would see how God has restored and strengthened us through our pain. Everyday he mercifully and tenderly marries joy and hurt, weaves together our sufferings with victories, brings a family closer and tighter though our circumstances were intended to tear us apart. Praise be to God for He is faithful.
Psalm 115:1 "Not to us, Lord not to us but to your name be the glory, because of Your love and faithfulness."
If you could see how her face lights up around her brothers, then you would never say that she can't express herself.
If you would look deep into her eyes, you would know she hears you.
If you could see into her heart, you would know how big she loves.
If you could have seen her when she was born, you would know how much she's grown.
If you could see her sleep, then you would know she is able to find peace.
If you could see her when she's sick, then you would know what a gift every healthy day is.
If you would care for her, you would know what a challenge she can be.
If you could see her, hold her, touch her and talk to her you would know what a miracle she is.
If you could see her then you would know the closest thing to unconditional love this side of heaven.
If you could see her brothers, then you would see compassion and love in action.
If you could see our family, then you would see how God has restored and strengthened us through our pain. Everyday he mercifully and tenderly marries joy and hurt, weaves together our sufferings with victories, brings a family closer and tighter though our circumstances were intended to tear us apart. Praise be to God for He is faithful.
Psalm 115:1 "Not to us, Lord not to us but to your name be the glory, because of Your love and faithfulness."
Monday, June 11, 2012
Shoes optional Summer
We are having what I am calling a "shoes optional summer." I know I am not helping out any stereotypes either...meaning that those to our north don't think we ever shoes except to church on Sunday, right? Seriously though, it's usually just me and my yellow boxes. This year, however, all the boys have flip flops too. My boys are strictly socks and tennis shoes kind of guys (by their own choice I might add), but I have noticed since they have had their flip flops that people are running around shoe-less like crazy. I think it's because the flip flops come off so easily. I am finding that they are coming off at friend's houses, in the car, outside and all over the house. I have lost count how many times we have had to "go back" for Grey's flip flops because he comes home with no shoes on. Seriously, wouldn't going shoe-less be easier? I think it would be except for one little thing...those signs that say "no shoes, no shirt, no service." I wonder if they really mean that...I think we might be finding out soon.
Oh and if you're wondering about Miss Sassy, she just prefers a good pedicure...
I am loving our "shoes optional summer" so far. It stands for everything I believe in about school free days...no alarm clock, no schedule, no problems...hmmm reminds me of a Kenny Chesney song.
Thanks for checking on us.
Oh and if you're wondering about Miss Sassy, she just prefers a good pedicure...
Thanks for checking on us.
Thursday, June 7, 2012
VBS
We have had a great week of Vacation Bible School. It's the regular every day things that I am thankful for...like Sophie Kate being able to attend VBS with her brothers. She's healthy, she's happy and she's able to get out and be a part of life with her family.
She wakes up smiling, she's feeling good and she has her very own class to go to. She sings, she colors, she's loved on and cared for by people who have a heart for children like our SK. What a blessing our church is, I just can't say enough good things. SK loves to be around people and activity and music and she gets all of that each morning at VBS.
Our church's Special Needs ministry frees me up to be able to serve in the boy's classes. This year I am teaching Jacob's class (3rd grade) and I have loved it! When I go and pick her up her teachers tell me how happy she has been, how much she responds to music and just how precious she is. It's always nice to hear those things, especially when I've been away from her.
In this world of such pain and suffering, hurt and sadness I am thankful for mornings with her and her sweet smile. Thankful that she's able to get out of the house with us. Thankful that she likes to be touched and loved on, because she is so loved and we all want her to know that. May I never take one morning of her smiling face for granted...we have traveled such a long road to get to where we are today.
We talked in bible study one day of how God is more powerful than our circumstances...a lesson for the teacher as well as the students for sure.
My favorite verse from our week...Daniel 2:20 "May the name of God be praised for ever and ever, for wisdom and power belong to him."
She wakes up smiling, she's feeling good and she has her very own class to go to. She sings, she colors, she's loved on and cared for by people who have a heart for children like our SK. What a blessing our church is, I just can't say enough good things. SK loves to be around people and activity and music and she gets all of that each morning at VBS.
Our church's Special Needs ministry frees me up to be able to serve in the boy's classes. This year I am teaching Jacob's class (3rd grade) and I have loved it! When I go and pick her up her teachers tell me how happy she has been, how much she responds to music and just how precious she is. It's always nice to hear those things, especially when I've been away from her.
In this world of such pain and suffering, hurt and sadness I am thankful for mornings with her and her sweet smile. Thankful that she's able to get out of the house with us. Thankful that she likes to be touched and loved on, because she is so loved and we all want her to know that. May I never take one morning of her smiling face for granted...we have traveled such a long road to get to where we are today.
We talked in bible study one day of how God is more powerful than our circumstances...a lesson for the teacher as well as the students for sure.
Monday, June 4, 2012
Pool Time
Continuing on with our celebration of summer...
Pool time at Grandma and Grandpa's house...
We're gearing up for Vacation Bible School at our church this week. There's nothin' like the sanctuary filled with close to 1,000 kids praising God the only way they know how....with 100% energy! It's gonna be a great time!!
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