Saturday, May 18, 2013

New Milestones

Summer is finallllllly here in South Dakota. So that means we get to go to parks everyday! This week has been chocked full of visits to parks. Mr Boy has a mild obsession with them as of late, and I am loving it. This week Mr Boy started crawling up the steps and going down the slides at parks all by himself! You're probably thinking, "Who cares?" And I don't blame you! But I'll put it into perspective: For a long time now, we watch babies pass Mr Boy on the playset, crawling up the stairs, going down the slides, while their moms nonchalantly watch from the sidelines. When you see multiple 1 year olds fly past your 2 year old on the playset, over and over, it gets a little disheartening. He couldn't accomplish any one part of the playground by himself, and was the only kid who still needed his mommy's help... and not just because of his more limited muscles and bone structure, but a big part due to his fears.  So it was especially moving and incredible to see our lil boy conquer the entire playground by himself!

Mr Boy was being a ham and wouldn't open his eyes for the camera.
Honestly, he is really not all that far behind his peers, but it's just amazing to see him finally so close to moving and playing like them, when he had so many obstacles and setbacks. It's easy for us to forget that not only was Mr Boy born 2.5 months early, but he has spent nearly 5 months out of his short 2 and 1/2 year life, in the hospital. And during those 5 months spend in the hospital, he was surviving, not developing, so it would be natural for him to be at least 5 months behind developmentally. Then add to that, his physical challenges and top it off with a strong fear of everything, and you've got a mess! :)

Yet Mr Boy continues to amaze us just when we are starting to get discouraged and sad about how fearful he is, by doing something brave. We've had a hard few months ever since Mr Boy's panic attacks started, but he really hasn't had an intense attack in several weeks. Just a few panicky moments every week and a lingering, heightened sense of fear. There have been many sad moments this past month as we have tried to partake in fun activities with Mr Boy, only to be shot down by his tearful, panic stricken screams, even when approaching our own neighborhood park. We just never know what we are going to get with him, or what will trigger fear. One day it's a fun time at the park, another it's screaming in fear and this is not the usual terrible twos... this is panic. I know this because he has also started throwing the typical "terrible twos" tantrums and they are so cute and manageable in comparison. Anyhow, this week has been a good week, free of his usual fears, and because of that, he has grown so much in just one week!

Mr Boy even played at a park full of other kids and didn't scream in the face of any of them! Crazy, I know. He's growing up. I think he was calm enough to let his guard down a little and actually watch the kids playing and realized that none of them were paying any attention to him, and that made him happy and comfortable. Usually in his life, when the attention is on him, something bad is about to happen, so no attention is good attention!

I think the further we get from his pain, the more Mr Boy will blossom. Since his surgery, we have not had to do his nightly painful routine, so he no longer has to endure a forced painful procedure every night, at the hands of his parents. Praise the Lord! And now that we give him "happy medicine" for every Doctor visit, we have been able to eliminate the main place where all his fear originated. We are excited for this coming summer of limitless possibilities! 

Some milestones and silly moments caught on video:

Thursday, May 9, 2013

Super Hero Cape!

Last week we got a special package in the mail from my amazing friends with whom I grew up, in Florida: Manika Chuon, Colby Roberts, and her wonderful husband, Joe!! We got 3 hand-made, personalized capes!!! 

Philippians 4:13
I can do all things through him who strengthens me.

Romans 8:31, 37-39
If God is for us, who can be against us? 
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. 

We were shocked and humbled by the capes and so excited to put them on and run around! Living so far away from our families and all the friends with whom we grew up, can make us feel a bit isolated and lonely at times. But these gifts made us feel so incredibly loved and supported!! Thank you Manika, Joe and Colby, for your loving and inspirational capes!!! We can't wait for the weather to finally get nice so we can run around outside with them on! I am sure Mr Boy will be wearing his cape to all future Doctor appointments.

Superhero faces:

Friday, May 3, 2013

A Good Reminder

My mom gets daily devotionals emailed to her every day by Aletha Hinthorn, who leads 'Come To The Fire' Christian Conferences around the country. They also happen to be friends and my mom has shared with Aletha over the years, about our family and what it was like when we first found out about Mr Boy's condition. Today's devotional from Aletha shared a little about our story from my mom's perspective. It is such a wonderful reminder of the Lord's sovereignty and mercy, even in times of great darkness. It was hard for us to see it then, and even sometimes our vision gets clouded when things get tough, but it truly is an incredible honor and blessing to be Mr Boys parents... an honor of which we are greatly unworthy.

What God Said to a Hurting Friend
by Aletha Hinthorn
Aletha Hinthorn
The night a friend in Florida was expecting to hear if her first grandbaby was a boy or girl, her daughter called to tell her that the ultrasound showed the baby is not a healthy baby.

She wrote, "Don and I cried and prayed with the kids and then we had our usual prayer time. We both were struggling not to lose it. I then walked down the hall to go to a bedroom where I go to pray. As I walked down the hall I was planning on bawling as soon as I shut the door!

"I walked through the door and before I could even sit down, the Lord said, 'You are seeing this all wrong. I am giving them an honor by sending them this baby.' With those words He also gave me such a great joy as I saw that it was true. I began praising and thanking Him instead of crying! I was amazed! It was definitely not what I was expecting! I have had some crying moments since then but that deep trust that He is really sending this for good is still there."

God can share His thoughts with those He knows will accept His will as perfect.

Thank You, Jesus, for the peace and joy that come when we acknowledge Your will to be good and perfect.

"Let God transform you into a new person by changing the way you think. Then you will know what God wants you to do, and you will know how good and pleasing and perfect his will really is" (Romans 12:2).