Timing

I am learning, or re-learning, that my circumstances reveal who I am. One quote from the book I am reading in my Bible study says, “God brought a set of circumstances into her life to show her what she was really like— so He could change her.” Clearly, that spoke to me. I’ve learned over these last few months that prior to Will’s birth I didn’t really depend on God, I didn’t really trust Him and I thought I knew better than He did. I am thankful that He is changing me and that the circumstances He has “filtered through His fingers of love” are allowing me to know Him differently than I would have otherwise.

And so, the circumstances are…

Will was officially diagnosed with CP at his neurology appointment at the beginning of March and his doctor ordered an MRI to try to find out why his head was so big and his body was so floppy. The timing couldn’t have been worse, I thought, as I was alone at the doctor with both kids totally not anticipating the diagnosis until he was between 18-24 months old. As I sat there, listening to Dr. Langkamp explain all of the reasons why she was giving him the diagnosis, Libby is yelling, “I want my crackers” and rolling around on the dirty floor. Will is exhausted because we’d been there almost two and half hours and I felt like there was a tidal wave washing over me. Before I started crying (on the way home), I laughed at the ridiculous situation I’d found myself in. And after the tears subsided, I thought about the timing of the office visit. Having both kids with me and both being needy reminded me that our life was not the doctor’s office we were sitting in, that my kids were not diagnoses, that I was a mom before I was anything else and that the distractions of my children can be a welcomed interruption in life’s most difficult moments. But it was still really hard.

His MRI on April 8^th went as planned. He was sedated and did just fine. Andrew and I sat in the waiting room during the scan but were with him while he fell asleep and while he woke up. Dr. Langkamp said the MRI didn’t show anything new. The area around all of his motor tracks suffered damage (arms and legs), which we’ve known about. His head size, which she was concerned about, is normal for him. There were no bleeds or signs of stroke. All of these results were answers to prayer. Now we just keep doing what we’re doing: therapy, therapy, therapy.

We went back to the ophthalmologist on Wednesday to find out the final results of his eye surgery and it’s hard to believe that we had two days of good news in one week. Will's eyes are cured! We go back in six months for a check-up. He has two teeth on the bottom, one on the top, he’s eating three meals a day and he’s laughing at Libby’s every move. He is a joy!

Libby is enjoying his attention and has become quite the song bird. She enjoys singing in a “microwave” on stage or in a grocery cart. They are so fun right now and I love being at home with them. The pigs arrived at the Thomas family farm so we’ve gone to see them no less than fifteen times. She’s gathered eggs with Uncle Phil and Grandpa, petted a chicken and a pig and went into the cows’ pen but did not want to pet them. Kind of surprising considering she talks about cows hourly.

Andrew’s birthday present to me was a trip to Florida. It was an amazing gift and something every mother of young children should be able to do at least once! At the last minute, he couldn’t go but I was able to enjoy five days with amazing family friends who hosted me while our friends, Andrew’s family and mine helped with the kids. Thanks, Presleys!

We celebrated my parents’ 35^th anniversary a couple of weekends ago with a house full of people. I am so thankful for their example of faithfulness to the Lord, to each other, and to us through all that they’ve been through. What a legacy! Libby and Will took their first trip to the zoo the first of April.

Will took the non-traditional view of the zoo by laying in the stroller and taking a nap. He was happy!It was a gorgeous 70-degree day and we met lots of friends there. Although they enjoyed themselves, I was exhausted when we came home. I started to think it was more work than it was worth!!

Easter was exciting this year. It was a great time to remember the importance of Christ’s resurrection and the hope it gives to each of us as we walk through this life. We all went to church and it was great to be sitting in the service together. The choir sang, "Thou, O, Lord, are my shield and the lifter of my head." Those words were meaningful as I was reminded that the Lord can be the lifter of Will's head. I was totally absorbed in the music and moment...that is until Libby said, at a very silent time, "I want to go home!!" Ah, motherhood.

We celebrated Andrew's family's April birthdays and anniversaries last weekend. It was great to be together, eat, open presents, play games and laugh. Libby absolutely loves her aunts, uncles, cousins, grandpa and grandma!

Our playgroup made its first visit to The Hudson Elms Assisted Livning and Nursing Home equipped with our crafts and a parade of strollers. We were able to visit most of the residents, including my step-mother-in-law’s parents: Gran and Pop-pop. Pop-pop received Christ as his Savior during a recent hospital stay; his attitude was amazing— upbeat, loving and gentle. On March 9th, he gave up his earthly body. It is comforting to know he is no longer in pain. We celebrate his life and that we will meet again in heaven. His story is a wonderful reminder to me that God is always at work in people’s lives whether they are five or 88 and His timing is always perfect. I am so thankful to have known this chapter in Pop-pop’s life story. (Thanks, Lyn!)

There isn’t a week that goes by that I am not thankful for our family and the friendships in our life. We seem to be blessed at least monthly with a family dinner or a dinner out with friends or a time to catch up with old friends or play with some cousins.

Thank you for your prayers, emails, texts and phone calls. I was very fearful going into the MRI but am very thankful for the results. Please continue to pray for Will’s core strength, for his head lag, for his thumbs to outdwell, and for his brain. As he continues his therapy, the hope is that his brain will find pathways around the damage and re-learn ways to manage. My prayer continues to be that I will have wisdom as my children’s mother, patience while I wait on the Lord’s timing, and a grateful heart as I reflect on all that I’ve been given. "The desert and the parched land will be glad; the wilderness will rejoice and blossom…and the ransomed of the Lord will enter Zion with singing; everlasting joy will crown their heads. Gladness and joy will overtake them, and sorrow and sighing will flee away.” Isaiah 35:1, 10

Brown-Eyed Boy

Here are some pictures of Will taken on Thursday. He's looking good!

Sweet Success!

Despite my best effort to worry some calamity into being, this day went perfectly! (Yes, I realize I am not supposed to worry but I did!) Everything went as planned and Children’s Hospital is an amazing institution. They were on time, professional yet caring and extremely organized. Will did a great job! My biggest fear was that he would be so hungry that he would cry from the time he woke up until surgery. Thankfully, he woke up at 5:30 am and could still have Pedialite. Once we were at the hospital, he was fussy but fell asleep until we had to weigh him. He was way too nosy to even remember he was hungry and I am so thankful! He didn’t cry when the NP checked him out or when the Child Life Specialist took him to pick out a doctor’s hat for Libby or when the nurse took him to surgery.

I can’t say the same of his mommy! I actually held it together until Dr. Locastro’s nurse came to take Will back for surgery. They were running about 15 minutes early so I was surprised when she said it was time for him to go. Honestly, I’d watched other parents walk by teary-eyed after saying goodbye to their kids and thought, “It’s outpatient surgery. They’re not leaving forever.” And then I bawled as the nurse walked away with Will. I think Andrew was surprised that I was so emotional because I’d been fine up until the very moment she said, “It’s time!”The surgery was very fast and Dr. Locastro talked to us in a conference room afterwards for about ten minutes about Will’s prognosis. Will only sees with one eye at a time which is really a brain issue. But because one cannot rewire the brain, stretching or rearranging the muscles usually sends enough information to the brain to wake up the part that hasn’t been working properly. That being said, we are now waiting to see what happens with Will’s brain. Because of his PVL, it is a little more of a guessing game as far as how much his eyes will be corrected. So, we wait. We’ll see Dr. Locastro in a week, and then six weeks and then every six months until Will is eight and his eyes are “set”. His eyes did look better the very few times he peeped them open today so I am eager to stare at him tomorrow when he feels better.Coming out of the anesthesia was a little rough on him. He was so mad when we walked back to the recovery room—he literally matched his purple scrubs! It took him a while to calm down even after I held him and sang his favorite “Twinkle, Twinkle, Little Star” a few times. After he calmed down and the morphine kicked in, he fell asleep. He was really hoarse from the tube being down his throat (I didn't even recognize his cry at first) so we ended up staying longer than we thought so he could have a little breathing treatment. The nurses were great and even sent a moose home for Will and one for Libby (a little stuffed moose, that is)!

Will was hooked up to the same machines he wore for 10 weeks in the NICU. I had a few emotions roll over me as I looked at the pulse ox screen and the heart rate monitor. I do not miss those beeps!

He slept from the time we put him in his bed (around 12:30) until about 4:15. Andrew and I also had a long nap; even though we didn’t have surgery, we were pooped! When Will woke up, he drank 12 ounces of Pedialite and kept it down (one concern with eye surgery is that babies have vertigo and are really nauseous) and later had some formula but didn’t keep that all down. He’s back asleep now and seems to be comfortable. He was giving a lot of little moans while he was awake but he also smiled and cooed for his visitors this afternoon. Our friends brought over dinner and Cousin Emmy, Aunt Meri, Papa and Nanny stopped by. Grandma is coming over tomorrow and I know we’ll all appreciate her TLC!

Libby survived Will’s surgery very well. She took care of Papa all day and arrived home toting her suitcase and asking for Will-Will. She was mostly concerned about the boo-boo on Will’s hand from his IV. That concern was quickly resolved when she saw the moose he brought her!

Thank you for your prayers. Tuesday night my friend called right before bed and said, “I hope you’re feeling the prayers for peace that people are praying for you tonight so you can rest.” I had just thought the same thing as I was trying not to worry about every detail of the next day. I did sleep well and so did Will.

Now we’ll pray that the surgery worked and that it will be his last one.

After I posted the last blog entry about living an abundant life, I took Will for his check up just to make sure his ear infection had cleared up-- and it had but his right ear was infected. Since Libby was with me, I asked the doctor to check her ears since she’d had a cough and runny nose for a week. Of course, she had one too! Sometimes I hesitate to even post anything on the blog about what I’ve been learning because I always have to live out that lesson that day or the one after. This time wasn’t any different!!

Next time I post a blog, I am going to talk about learning how to enjoy sunshine, rainbows, and winning a huge cake to eat all by myself. Then maybe I’ll have that sort of day!

A Surgery and Two Birthdays

Since Will was born nine months ago, I think I’ve experienced the abundant life Jesus talks about in John 10. Another translation of that verse says that He came so that we can have a “better life than they ever dreamed of.” At the beginning of the last nine months, I think I would have rather it said “a vastly different life than they ever dreamed of” because there were days in the past when a “better life” didn’t seemed likely. As I’ve walked through this abundant life, I would agree that it’s better than what I’d dreamed of because I never would have called myself to be this dependent on the Lord or this transparent before the people in my life. And the results of both situations have been life-changing. But, a more abundant life doesn’t mean an easier one—I think it means one that overflows!!

And so…

Will had an appointment with an eye doctor at Children’s Hospital in Akron at the end of January. The doctor found that Will has congenital esotropia-- it's what makes Will look cross-eyed most of the time. It's pretty cute! Fortunately the solution is an outpatient surgery that will correct the problem. On February 24^th at 9:00 am, he’ll have surgery that should last 40 minutes. By 11:00 am, we should be on our way home. He won’t have any patches over his eyes but they will look bloodshot for a week and pink for eight weeks. He’ll be under general anesthesia so he won’t know what’s going on… I wonder if they’ll give me something as strong!

A couple of weeks ago on Saturday, Andrew had to work all day so the kids and I invaded Nanny and Papa's house. Papa volunteered to keep Will so that Nanny, Libby and I could go see Libby's first movie. Don't let the picture fool you. She was only in her seat about 40% of the time, but the theater was pretty empty and the people who saw her dancing around thought it was as entertaining as the movie! I think we'll wait another year before we go back!

Libby and I celebrated birthdays. She turned two and I turned 30. My mom and my sister-in-law took me out for a spa day and then surprised me with a birthday lunch complete with so many of my “sisters”. I was stunned and felt so privileged to be surrounded by such sweet friends. Those friends were a big reason we survived Will’s hospital stay. They cleaned my house, brought meals, watched Libby and sat with me during some long hospital nights. Because they shared the heartaches and joy of that experience, the lunch was particularly meaningful. What a great way to mark the beginning of a new decade!

My Lawrence grandparents made the long trip from Missouri to be in Ohio for our birthdays. My sweet grandma is in a wheelchair most of the time so it was no small task for my grandpa (Papa Jim, as Libby called him) to get them both here. We were so thankful for the effort and enjoyed their nine-day visit immensely.

On our birthday, Andrew took the day off and Papa Jim, Libby and he went to see the cows. It was the highlight of Libby’s day! We took her to Chik-Fil-A for lunch because of all of the cows and play area. She loved that too! Later in the day, Grandpa and Grandma stopped by with gifts for the birthday girlsand Libby’s friend Laney brought her cookies and Dora balloons! Nanny came over for dinner bearing gifts, balloons and cake, too! As she opened presents that night, she tried on every piece of clothing she opened. She loved the clothes from Grammy Chris!

Later that week, Will had his follow-up hearing test. He did fine for the first few minutes but when they started checking his left ear, he screamed so much they couldn’t finish the test. The next night, he woke with a fever of 103.7 and the next day, the doctor confirmed he had another ear infection. It’s cleared up now but just to make sure we’re going to the doctor on Friday. He has to be totally clear on infection and antibiotics for his blood work and surgery.

The weekend after her birthday, Libby and some of her friends celebrated her birthday. It was a great night filled with running, jumping, singing and a huge parachute! Libby topped it off by starting the birthday chorus when the lady walking towards her with the cake took too long to start singing!

Since the birthday hubbub has subsided and my grandparents returned home, we’re preparing for Will’s surgery. It will be interesting to see how he changes afterwards. It will alter the way he looks and I am torn by that. His little crossed eyes are endearing and that’s the only way I’ve ever seen him. I know it will make it easier for him to chew on his hands and it will give him depth perception. I can’t imagine not seeing the world normally!

Libby and I have started going to story time at the library on Tuesdays. It’s been nice to have a weekly date with her and she loves the attention! Uncle James comes over to stay with Will and they have some bonding time. UJ is practicing his diapering skills on Will and most of the time the results are positive for all parties involved. When James and Merideth’s daughter arrives in June, he’ll be a pro!

I am really enjoying my Bible study on Wednesday nights. It’s been good to be around adults for one evening a week! This week it was my turn to talk about what God has been doing in my life. As it turned out, the people I am closest to in the study were gone so it was as if I was introducing myself to strangers. Although I talk about our life on the blog and to our friends and family, I haven't really had to start from the beginning with many people. Totally without warning, well, I should have seen it coming, I cried through most of the talk. Fortunately, everyone else cried too so I didn't feel that dumb. It was actually good to say outloud what I've learned over the last nine months and I was thankful that others were encouraged by it as well. But I am not sure I want to do that again any time soon!

As always, thanks for your prayers in the coming weeks. Not only do we have Will’s surgery on the 24^th, the following weeks brings his neurology appointment (March 9^th) and the rescheduled hearing test (March 11^th). He’s pretty flexible but I do get a little overwhelmed with planning around the appointments and finding babysitting for Libby. I am so thankful for our family and friends who offer repeatedly to help and for Grandma who comes every Thursday for a couple of hours. That is such a gift!

The normal requests are that Will’s indwelling thumbs will “out dwell”, that his head lag will resolve and his ATNR will integrate. He still lacks a lot of core strength and it’s a slow process to build that in a baby. The biggest anxiety right now stems from the MRI. Please pray that we will be prepared for whatever the scan shows.

I’ve been reminded again this week of Psalm 18: 30-32.

As for God, his way is perfect;
the word of the LORD is flawless.
He is a shield
for all who take refuge in him.

³¹ For who is God besides the LORD?
And who is the Rock except our God?

³² It is God who arms me with strength
and makes my way perfect.

Now to remember that when my life seems a little too abundant…

A Baby Changes Everything

That statement has never been truer than in these last eight months!

As I listened to this song at the Christmas concert at church, I couldn’t help but think about how our baby Will changed so many things for me. I’ve learned more about dependence, the NICU, how many cc’s are in an oz., the helplessness a parent can experience, what pediatric therapy looks like, what a neonatologist can and can’t tell us, what it means to be surrounded by love, how it feels to know that people are hoping and praying for us when have trouble doing those things for ourselves. Our baby changed so many things for us and the people who are closest to us.But, of course, the baby who changed everything for everyone is Jesus. As I listened to the songs about Him, one in particular was more meaningful this year than any other. “Mary Did You Know” talks about all of the things that Jesus will do in His life that she couldn’t know of when He was just a baby. She was already pondering in her heart all of the things that were happening at His birth, but the song speaks of events even further down the road:
Mary did you know?

The blind will see

The deaf will hear

And the dead will live again

The lame will leap

The dumb will speak

The praises of the lamb.

Of course, the promise her baby boy brings for my baby boy is that, whatever Will’s future may be on this earth, in heaven he will walk and sing praises to Jesus. And it also reminds me that as I treasure these moments with both of my children, as most mothers do, I cannot know what they will do in their lives. I have no idea what the Lord has in store for my children.

For now, we are seeing Will gain strength every week. His little neck and trunk are stronger and more stable. His hands are more opened than closed. He’s “eating” cereal and fruit—he loves it but I think he also loves the mess he makes! His therapists are starting new exercises because he’s mastering the ones he’s been working on for the last couple of months. Libby is becoming such a big girl. Her independent spirit is really showing itself in mostly good ways. The other day she asked for popcorn. After I made it, poured it in a bowl and set it on the counter to cool, I turned my back to her and the popcorn to finish unloading the dishwasher. The next thing I know, I hear her babbling as she was walking up the stairs. I looked over at the counter and the popcorn bowl was gone. She’d taken it, headed up the stairs and, as I followed the trail of popcorn, I found her waiting for me in the TV room on the couch. I guess I was taking too long! In addition to eating popcorn, she loves to "cook" and eat peanut butters (as she calls it!).

She loves to sing, especially “Twinkle, Twinkle, Little Star”, the ABC’s, “Away in a Manger”, "Jesus Loves Me" and “Patty Cake”. When Will sneezes, she says, “Bless you, Baby! Bless you!” She also likes to announce when he has a stinky diaper. Such a good sister! She’s working on obeying the first time she’s asked to do something (not something I’ve even mastered) and having a happy heart when Mommy can’t do everything she wants exactly when she wants it done (again, patience is not my strength either).

They both had pink eye and ear infections. What fun it wasn't. Other than those little viruses, our Christmas was filled with family, food and the joy only a child can express while opening gifts! Libby thought she’d hit the jackpot because she opened all of Will’s presents along with her own. She’s enjoyed playing with her toys and showing Will how to play with his.

Right before Christmas, I attempted to take some cute pictures of the kids and ended up with this...

Oh well!

We've been able to see friends and family over the last couple of months: Andrew's mom came the week before Thanksgiving and Libby was so happy to see her "Grammy". Andrew's newest nephew Dylan and his parents were here for Thanksgiving. We went to the Christmas concert with Andrew's godparents and it was so nice to be with them for the evening. My friend Courtney stopped by after Christmas to see us and practiced holding Will since she'll be having her own baby in June!

We’re looking forward to a new year. This one has been a full one— we really can’t believe all that’s happened when we stop and talk about it. I know things could have been very different and that made me so thankful that we were able to be together as a family of four for our Christmas celebrations. I was reminded so often this year of God's love expressed through His people as my little family was cared for by our friends and family and at Christmas I was reminded of God's love expressed through the gift of Jesus who gives us hope in this life.

We are meeting with the neurologist in March (9th) so she can schedule his MRI. Clearly it's not something we're looking forward to. Please continue to pray for Will's strength to increase, for his fine and gross motor skills to improve, for his indwelling thumbs to "outdwell" and for his ATNR reflex to integrate. Today I am also scheduling his follow eye appointment to check for low tone in his eyes. All of these things are part of my daily life and Will's and I pray about them often. For some reason though, it is encouraging to know that there are others praying about it to. Again I will say that my greatest strength apart from the Lord and His mercy is the prayers of His people for my family.

I know so many people who read this blog are also facing their own trials. I am praying that we will be mutually encouraged and learn from each other's experiences. One thing that I've learned through all of this is that life is hard, but God is good. He provides comfort, strength, encouragement and hope at times and from places I don't anticipate. He is so kind.

Happy New Year!