Good Father, Good Fall

Many of you have probably heard the song "Good Good Father" sung by Chris Tomlin.

Every time I hear it I cry. He is so good. I look back on where we were a year ago...

No sleep. Colicky child. 

No idea our child had hearing loss or CMV. 

Struggling as we added another child to our family, but thankful at the same time. 

and as I look back I'm amazed at His goodness. 

Believe me when I say the grief is still fresh. I think back to Thanksgiving 2014 and never want to re-live those days. I remember crying so much my head hurt, arguing with Keith about what we should have done. 

What the doctors didn't do. 

And feeling very alone. 

I don't know when those days will fade from my memory, but I want to remain faithful even if they don't. I want my kids to read this blog in 20 or so years and see all that God did in our family through the addition of Hannah. 

This year things are brighter. Our girl is progressing, slowly, but still progressing. 

I think we've accepted it, for the most part, and are trying to move on to a new normal. 

Things are different, friends are different and the way we look at life is different. Many people in our life have continued to come around us, pray for us and encourage us (especially from afar). But the special needs title is a lot for some so a few friendships have been lost and that's okay. 

We are thankful that we do believe in and serve a good, good father who is perfect in all of His ways. It's a love undeniable with peace that is unexplainable. 

Peace may still be hard to feel all the time but I know He gives it to me lavishly. 

And for that I'm thankful. 

"Be thankful in all circumstances, 

for this is God's will 

for you who belong to 

Christ Jesus."

I Thessalonians 5:18

A Morning at Home

The weather has said rain for today all week so I planned on staying in.

We don't get many of these days anymore, even at the ages of my kids. There is usually school, therapy, a doctors appointment, grocery shopping or just the need to get out of the house. 

But today was different. 

And refreshing. 

We started the day watching Curious George's Halloween special, decorated the front door, made a paper pumpkin, played games and danced around the living room. 

I'm thankful for these days. Even though reminders to "listen" and "don't lay on your sister" still had to be said, it's fun not to have a schedule and just enjoy my kiddos. 

Here's a pic of our spooky door

And Eli's pumpkin too. 

Thankful for an "off" day to spend with these two. 

Don't Worry About Tomorrow

A few months ago I was checking out at the grocery store alone, a rare occurrence. As I moved to the front of the line I noticed the clerk checking people out was only using one hand to scan every item and put them in bags. At first I thought she did not have a right hand, but as I got closer I noticed her right hand was just down by her side, lifeless, like she didn't even know it was there. 

I really wanted to ask her why she couldn't use that hand, what had happened to her hand, but in the 30 seconds I stood there before her I could not figure out an appropriate way to ask without coming across insensitive. Also, I didn't have Hannah with me, who usually helps me to start those types of conversations. 

A few months ago we knew Hannah had trauma to the right side of her brain because of the CMV, every doctor and therapist told us this would lead to left side weakness but we really didn't know what that would look like down the road. 

When I saw the clerk in Kroger I got a glimpse of what could be. 

I started to worry. 

Now that Hannah is moving more we can see how much she favors her right hand and how hard it seems to be to move her left. 

It's hard to pull up with one hand that's stronger than the other. It's harder to crawl, it's harder to eat. 

For the most part Hannah is adapting. I am amazed at what she can do with that right hand, but we want her to use her left too. 

And we don't want it to be so hard. 

There are days when she puts things in that hand, brings the left to a toy, claps, and more. But at other times it seems like she is totally disregarding it. 

As I understand it, using her left hand doesn't make sense in her brain. Even if she was older and could understand me telling her to move it she could not do it. 

That's why she's in therapy. 

That's why it's important to start early and work with her hand often. 

I wonder if the clerk at Kroger had therapy or the chance to use her hand?

It's hard not to constantly wonder what the future will look like for Hannah. What she will do, how she will be looked at by others. 

That's why I entitled this post "Don't worry about tomorrow" because I know God has given me enough strength, love, grace for today. That's where my mind needs to be. That's where I need to place my trust. That God has this. That he has Hannah in His hand. 

Would you pray that our family will focus on today and not what may happen tomorrow? Believing God is full of grace for the unknown. 

Also, will you pray Hannah will be able to crawl?  We've learned that pushing up to a crawling position can significantly increase the strength of her left arm. 

We know this is possible, but it's hard. 

Thank you. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Matthew 6:34

"Whoever has ears, let them hear!"

This verse has new meaning to me since Hannah was diagnosed with hearing loss. 

I have questioned why the Lord even gave her ears if she couldn't use them. Through her hearing journey I have learned much more about how people actually hear and that it has a lot to do with brain, not the actual ears, but she has ears. 

Also, do you know how many kids books and songs have to do with ears?  Anyway, that's for another post. 

I have wondered if Hannah would talk and if she did talk would it be understandable? I've started teaching her a few signs but I really want her to be an oral learner. 

Back in May she did start babbling which was huge. She was actually right on target with typical hearing kids and I got really excited. Her teacher was excited too but told me that many deaf children actually do babble but then it tapers off at about 10-12 months. So, I was waiting for that to happen. 

All I have to say is Hannah is not tapering off. She actually is getting louder and wants to get her point across. She'll sit there with her finger in the air jabbering about something really important. And yesterday she actually said "uh-oh". 

What? 

A word? 

So exciting. 

I am so thankful her hearing aids are enough for her right now. 

This isn't to say we are not pursuing cochlear implants, we are. We actually are meeting with a surgeon in town next week and meeting with a team of doctors in Cincinnati next month. In my (non-professional) opinion I don't think they'll want to move forward with CI's at this point but at least we'll have a foot in the door with doctors if and when they are needed. 

In the meantime I'm soaking in all the "uh-ohs" and anything else she wants to jabber at me. 

"Whoever has ears, let them hear."

Matthew 11:15

Hannah-banana

Our sweet, sweet girl turned one!

Hannah,

You laughed. 

You smiled. 

You played. 

You smashed. 

You continue to amaze me with your eye contact and curiosity. 

Your subtle ways of getting your opinion across. 

The way you light up the room just by entering. 

Your smile. 

Something that will always put me in a better mood or change my perspective on any situation. 

Today it was fun to celebrate you. 

To thank God for you. 

To look back and be encouraged by all we've seen you do this year.

Rolling over, using your left hand, babbling, eating solids, sitting up, shaking your head, connecting with our hearts. 

Hannah,

This first year of your life has been rough at times, not always fun and stained with grief. You have caused me to pray more, seek more, hope more and cherish life more. You have helped me notice others and realize that I really don't know what another person is going through. A kind word or a door held might be the nicest gesture they've received that day. 

You've given me strength to speak up, question doctors and learn from therapists all for the sake of helping you improve. I've learned to rejoice over small improvements and see these things as proof that the Lord hears and is helping you. 

You've caused me to walk slower. To not hurry through my day, but take the time to sit and rock you to sleep if that's what you need. 

Sweet girl, I know I have a long way to go to be the mama who is a pro at all that life throws at you, but I will willingly stand up for you and learn new things for your sake. I know God is making you into the daughter He wants you to be and I must hold you with an open hand as I participate on your journey. 

Dear one, I wish things were different and life wasn't so hard, but this is what we must endure until Christ takes us to Heaven. There He will make all things new, including your body, but we must wait. Thank you for being an example of patience. 

I look forward to what the Lord has planned for year 2!

With all my heart,

Mama

Here's a video in celebration of Hannah's 1st year!

Thank you to all of you who pray for Hannah and our family.  

We know those prayers have held us this year and will continue to encourage us in the next.  

Sickies

With both of my children, their first colds have been doozies. When Eli was 10 months old he got a bad cold that was accompanied by congestion that went into his chest and resulted in RSV. We had to give him breathing treatments and sit him up at night. I remember thinking "it can't get much worse than this". 

He did recover and thankfully has not had RSV again. 

Well, last Friday Hannah also came down with a fever and, like Eli, had a pretty pitiful weekend. 

She had congestion, fever, sore throat, the works. No one was getting much sleep around here. 

As of today, a full week after her symptoms started, she is doing a lot better and just has a nagging cough. 

I guess everyone has to endure their first cold or sickness, but this mama hopes it goes away and doesn't come back for a long time. 

Sweet Hannah falling asleep on the floor, evidence that she's sick because she rarely falls asleep anywhere without being persuaded. 

Well, with the fever gone and her (& all of our) spirits lifted, bring on the celebrating. Hannah turns 1 on Monday...whaaat? I know, I'm just as floored as you are. 

"Weeping may last through the night, but joy comes with the morning."

Psalm 30:5

Welcome home!

I knew this week would be crazy before it started, but I did not expect this. Looking back, I can't believe we've only been back 7 days. 

So, like any kiddo who is in the therapy, when you return from a trip everyone wants to meet with you. So Monday to Wednesday Hannah had 1, maybe 2 appointments per day. Not bad, and I have to brag that everyone was SO impressed with her sitting. 

Another thing that happened is Eli started school! Yay!  

He was SO excited and did so well the first day!

That was Tuesday. 

Wednesday he woke up with a 101+ fever. Whaaaat? 

Definitely not in the plan this week. 

Because Thursday Hannah had an ABR (sedated hearing test) which had been scheduled for at least 2 months on a day Eli would be at school, right?

Wrong. 

By the time Eli woke from his nap Wednesday afternoon his fever had crept up to almost 104 and he was pitiful. 

So regroup. Keith stayed with Eli the next morning and I went with Hannah to the hospital. 

Besides having to fast Hannah did beautifully. Barely fussed at the anesthesia and slept through the entire procedure with just nasal sedation and not the IV. 

The results of her test were good. Her hearing is the same as it was 3 months ago, so hearing aids are still working well for her as evidenced by her continued babbling and reactions to sound. 

Our next steps are having her evaluated by a team of doctors on the cochlear implant board in Cincinnati. These doctors include a developmental pediatrician, an ENT, the surgeon, a speech therapist and one more that I cannot think of right now. Since Hannah has additional issues (not just hearing loss) we decided to go this route so that more eyes are on Hannah and nothing is missed. 

We also plan to meet with a cochlear implant surgeon in Louisville at the end of September to get his take on her. Regardless of where the surgery takes place, this evaluation will help either doctor. 

So, back at home...

Eli is still pretty pitiful sitting at the table with a blanket wrapped around him in August. Poor guy!

But we are making it. Today is Friday and tomorrow (or 5 o'clock today) cannot get here fast enough. 

Hopefully next week will be less drama-filled. 

Mama said there'd be days like this.