What I Want to Say to the Stranger in the Grocery Store

     One of the most common things people say to me when out in public with Breckin is, "Is she asleep?" The reason everyone thinks she's asleep is because for the majority of the time, her eyes are closed. Even when she opens them wide as she tilts her head back to give me slobbery kisses, they are very small. Most of the time, I just tell people, yeah I think she's trying to go to sleep. Or, yeah it's her nap time. Every so often though, I just tell them no she's not asleep, she's blind.
     It never fails that when I tell someone this, they always respond with a sad, "I'm so sorry." I immediately smile and try to turn the conversation around. I tell the person that it's nothing to be sorry about, that she's a happy baby, and that she's such a blessing. Most of the time though, I feel like the person walks away not really believing that I meant any of that. They probably leave feeling sorry for me and Breckin, and may even tell the sad story of meeting a mom with a blind child at the grocery store that day.
    The truth is, my smile that I give that person, is genuine. The words that come out of my mouth when I talk about my child, are sincere. They are not just things I say to strangers to make them feel better, or to make me feel better about Breckin being blind. I am truly and unbelievably blessed to be called by God to be this girl's mother. She amazes me everyday.
     Now of course, being a mother to this girl does not come without it's challenges. There have been many days when I have asked God why He did call me to be her mother. Everyday has some sort of struggle, but everyday also has breathtaking beauty. When I watch my 14-month-old feel around her to find the toy that she wants and grab it, when she reaches for me to pick her up when she hears my voice, when she rolls a car back and forth with me, and when she sings to me with her sweet "la-la-la," I am blessed. When she claps for herself, raises her hand in the air to praise the Lord, and rolls her hands around to tell me she wants to hear "The Wheels on the Bus," I am amazed.
     Seeing her live life, allows me to understand more about the sovereignty, goodness, and power of God. When Breckin was first born, I didn't think she would be able to do any of the things that she is doing now. When we learned that she was born with multiple birth defects, I thought, what are her chances of living a normal life? (By the way, I hate even referring to any part of her as having a defect. To me, they are far from imperfections or flaws, but just part of what makes her who she is.) God is so big though. His power is not confined by something like birth defects.
     From now on, I plan on being even more outspoken about my daughter's blindness. I want others to be blessed by her as much as I am. I want others to see the awesomeness and majesty of God through her. And I want others to see that God did not give her this to be a punishment or curse, but so that He would be glorified!

Love,
Brooke

Meekness and Weakness

     So this new year has been a little tough so far. Being a mom to a special needs child is just hard. I have definitely felt inadequate lately. A patient at work asked me last week, "How do you do it?", and another patient who saw me with Breckin when Josh brought her up to work one day, said that I am an awesome mom. I told the first man that well I don't do it. It's all part of God's plan for my life and I just have to rest in that fact. To the second man, I said that no I'm not awesome, but God is awesome. I tried to convey to both of these men that any perceived strength or awesomeness is not me at all, but a reflection of God. Because I for sure wasn't feeling strong or awesome.

     Several days of feeling pretty depressed went by last week. I was just feeling scared and discouraged about Breckin's future. The fact that she is blind and will always be that way just really hit me. Because of her blindness, she will always have challenges, and this thought completely overwhelmed me. At the time of this overwhelming thought of her future, she was also regressing with her feeding, being overly fussy all the time, and just not being pleasant to be around. I was finding myself envious of other mothers without special needs children. Mothers who don't have to constantly "work" with their children to teach them the normal baby things they should be doing. Mothers who can put food on their child's high chair tray and their baby will just eat it. Mothers who don't have to be conscious of every calorie that their baby consumes so they can make up the difference in their feeding tube. Mothers who don't wake up every few hours at night because their blind child doesn't know that it's nighttime and that she should be sleeping. I could go on and on, but you get the picture. 

     Needless to say, I was just not feeling it, the whole accepting this as part of God's plan. I know that it's a sin to be envious of others, and I do know that God chose me to be Breckin's mom. I also realized that I had not been spending quality time with the Lord lately. Because of the busyness of life, I have to make time for God, and I wasn't doing it. Once I finally did, He revealed to me in 1 Peter 3:4 that He finds great worth in a gentle and quiet spirit. This word "gentle" also means "meek." In my girls' bible study last year, we studied about meekness in the beatitudes. Matthew 5:5 states," Blessed are the meek, for they will inherit the earth." During this study, I truly learned what meekness meant.

     According to the blue letter bible, "meekness toward God is that disposition of the spirit in which we accept His dealings with us as good, and therefore without resisting or disputing." I was definitely not having a meek spirit at that time, but it was because I wasn't "in the spirit" like I should be. I had neglected my prayer time and time spent in the Word for several days, and it was evident in my attitude and disposition. I'm so grateful that my study of 1 Peter led me to remember about studying meekness in Matthew last year. I'm so thankful that God's word is relevant and He reveals His character and attributes to me in every book of the bible.
     So yes life is hard, and circumstances that are out of my control are difficult to handle. I think it's okay though to be sad, and to cry sometimes. It's okay to show my weaknesses to others. God loves our weaknesses because it is in them that His glory is shown. 1 Corinthians 12:9 says,"...My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." This is me, boasting about my weaknesses, but also recognizing that for God to do His power in my life, I need to be in the spirit, resting in His word.
     I may get discouraged when life with Breckin seems to be one step forward, and then two steps back. However, I rejoice in those steps forward. Some weeks go by and those steps forward seem few and far between. And in those weeks, I must be more meek, accepting these things that are dealt me as good.


Love,
Brooke

Giving Thanks

     Today I picked out the color and style of my daughter's hearing aids. A few weeks ago, Breckin had her fifth hearing test since being born and this one was supposedly the most definitive. It showed that she has mild hearing loss in both ears with her left ear a little bit worse. We saw our ENT today and she gave us the go ahead to start getting Breckin fitted for hearing aids. When I first heard the news a few weeks ago that Breckin would need hearing aids, I was saddened. I realize that it's only hearing aids, and it's not like she's deaf, but the thought that went through my head was, "Can one thing on my child not be normal!?" This girl is already going to be different, and seeing hearing aids on her ears is just an obvious sign that she is not like other children.
     After my tearful drive home, and a couple tearful days later, I began to just be thankful for Breckin's hearing aids. The bible verse that has constantly gone through my head this past year is 1 Thessalonians 5:18: "Give thanks in all circumstances; for this is God's will for you in Christ Jesus."It says it all right there in that verse. God's will for me is to be thankful in all circumstances. I know I have written a blog post about this verse before, but it is so applicable to anyone's life. I am so thankful that Breckin can hear and that she will be able to hear even better with her new hearing aids. I am so thankful that she won't have to wear boring old-man hearing aids, because I picked out some cool pink ones with sliver sparkly ear pieces :) I am so thankful that we have met our deductible for the year so these expensive hearing aids will be paid for 100% by our insurance company.
     I didn't really intend to write a blog post about being thankful on the eve of Thanksgiving, but it just sort of worked out that way. This whole year has been one trial after another, and I have a feeling the rest of our lives with Breckin will be a continuous stream of trials. However, I have learned the secret to getting through these trials is #1: Be thankful to God in everything no matter how bleak and hopeless things seem. And #2: Know that God is sovereign! He sees the whole story from beginning to end.
     There's a song by Casting Crowns called "Just Be Held" that totally speaks to me in my life right now. It doesn't really have anything to do with being thankful, but it does speak on God's sovereignty. I was just going to put the lyrics of the chorus, but after reading all the lyrics again, I just felt the whole song was important to know. I hope these words bless you like they have me. I've actually had to listen to this song several times to really get it all. The part I like most is the line that says, "Your world's not falling apart it's falling into place. I'm on the throne stop holding on and just be held." Happy Thanksgiving!

Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go

-B

May God's Work Be Displayed

     We took Breckin to her third and likely final eye doctor a few weeks ago. After she was born, she got an MRI of her brain and this showed that her optic nerve was not formed on both sides. The eye doctor at LeBonheur told us there is no hope for vision, but encouraged us to get a second opinion. So, we did and saw Dr. Byrd. She pretty much said the same thing after examining Breckin's eyes and viewing the MRI. However, she said she would consult a retina specialist, and this was the third eye doctor we just saw.

     This doctor did an ultrasound of her eyes which is done just like they do over a pregnant belly. He put the clear goop over her eyelids and ran the wand over each eye. This exam took less than a minute which pretty much told me he knew what he needed to know right away and didn't need to look any further. He told us for the third time that Breckin is blind. We had heard this several times before and pretty much knew that she was, but there was something so final about hearing it from him.

     When we were told this in the hospital after Breckin was born, it was probably one of the worst days of my life. My brand new baby who I knew had a serious heart defect and a brain malformation would also be blind? I just could not imagine that this was true. I struggled for several days with this and was very depressed because of this news. However, God like He always does, changed my perspective on things.

     Through everything we have gone through with Breckin, I have constantly had to remind myself that God is sovereign. I struggled so much with wondering why God would create Breckin the way He did. A passage of scripture in John 9 was recently brought to my attention. It is a story of a man who was born blind. Jesus' disciples asked him why this was so. They thought the man or the parents of the man were perhaps being punished for some sin. This was Jesus' reply: "...but this happened so that the work of God might be displayed in his life." (John 9:3) My hope and my prayer is that God's work will be displayed in Breckin's life. 

     I personally see God's work in her life every single day, but I pray that others will be impacted by her life as well. Because of Breckin's lack of vision, there are definitely challenges she will face. Teaching her to eat, talk, crawl, and walk will be difficult because she can't imitate others. She doesn't have the main motivation that other babies do: seeing something and wanting it. I initially thought Breckin would never smile because she would never see anyone smile. Now, she smiles nearly all day and even laughs a lot. I thought, how is she going to know how to eat. She can't see the spoon with the food on it coming towards her mouth. But, she opens her mouth when she hears me say, "more." She instinctively puts her arms out when she is placed in a new setting to feel what's around her. When I give her her paci with her frog attached to it, she moves it around to position it so the paci goes right into her mouth.
     These are just a few of the things that Breckin does that amazes me. Because I have seen how God's work is being displayed in her life, I had a peace when the last eye doctor confirmed that she was blind.  I don't even want to think about the challenges that we will face as Breckin gets older, but today she is a happy little baby who can do almost anything any other baby can do. She just has to do things a little differently. My daily prayer for this sweet baby is Phillipians 4:13: that she can do all things through Christ who strengthens her.

Love,
B

 Big grin!

Pushing up to crawl

Sitting up like a big girl 

     Holding on to the arms of her chair

We Have This Moment Today

     So I was going to write this blog post about moms who seem to be able to do it all. Lately I have been feeling a little less than adequate in the mom department. It's not so much that I haven't been a great mom to my children, but it's all the extra qualities that moms around me seem to possess where I don't measure up.

     I see moms with multiple children who are able to be on time to events with their children looking adorable in the latest fashions. There are mothers all around me who not only remember teacher appreciation week, but also manage to find the time to deliver a hand-made gift. These are also the moms who would never pay school tuition late, always remember to turn in necessary forms on time, and pack super nutritious lunches which their children actually eat. 

     For birthdays, whether they be for a child or adult, a gift from us is usually bought the day or morning before the party and stuffed into a bag we have lying around the house with our name scribbled on the front so they know who it's from. I am not the mom who has thought several weeks in advance of the birthday and has special-ordered a personalized gift to be wrapped in cute paper and then has a custom-made name tag attached with their child's name on it. 

     These thoughts have been running through my head lately and it seems like the more I think about them, the worse I get with trying to be better at these things. One such evening occurred this past weekend. Josh and I went out to dinner with the girls to Genghis Grill. I packed the diaper bag with everything I thought we could possibly need for Breckin. I even mixed her formula bottle and thickened it in the car while we were stuck in traffic, and sat in the back seat to give it to her while she was in her car seat. I thought, I'll get a head start on feeding and will be able to actually sit down and enjoy my meal once we get to the restaurant. 

     Well, of course things don't ever go as planned in our life. I finished giving her the bottle shortly after we sat down and began to get everything ready to feed her through her feeding tube. I thought I had the tube attached correctly, and it wasn't until the first few pours of formula, that I realized everything was soaking wet! The milk was not going into her belly, but all over her and the car seat. Meanwhile, Harper was sitting next to me bouncing up and down in the seat and trying to get me to help her with a maze she was trying to do on her kids' menu. Josh had already gotten his food so he was eating and trying to get Harper to settle down.
     A few minutes into this chaos, an older gentleman walked over to our table and was commenting on how beautiful our daughters were. He then began to tell us that the only moment we have guaranteed is the moment we are in right now. He said we are not promised tomorrow, so we need to cherish the time we have. He told us his children are grown now, but it seems like yesterday that they were little like ours. The man then asked us if he could sing us a song. It seemed a little strange sitting in a loud public place for an old man to serenade us, but sing he did. He sang us a Bill Gaither song called "We Have This Moment Today" and it nearly brought tears to my eyes. The song echoed the words that he was just telling us.
     After he left, I began to look at our dinner time a little differently. I was happy to show Harper how to get through her maze, and found the feeding situation with Breckin quite humorous. After we finished eating, the man, who we came to learn was named Walter, came back to our table once more. He asked us to tell him a little about Breckin's health problems. After giving him the short version, he asked if he could pray for her. He laid hands on our sweet baby and prayed for her healing in the name of God. He told us to never give up on her and to continue to pray for her healing and filling her with positive words. He told us that God has given these children to us as a gift and that we are also a gift to them. He said to always tell these girls how beautiful they are. As he left for the final time, he told us that this would be one of those moments in our life that we would never forget. He was right about that.
     Since this meeting with Walter, I have worried less about what the other mothers around me are doing. I have concentrated on enjoying each moment with my children. If that means the house isn't clean, a perfect, well-blanced dinner isn't cooked, or my three-year-old's outfit doesn't match, then that's okay. I do admit that my life could use more organization, and that is something I am working on. God does want us to live orderly lives, and I think with a little extra organization and planning in my life, I can get a little closer to achieving that.
     I give major props to moms who can do it all, but I hope they realize that it's okay if everything is not perfect. Enjoy these beautiful babies that God has given to you, and take your job as a mommy seriously. Walter was right; we are not guaranteed tomorrow, so make the most of the moment you have right now. Teach these children the important things in life: to love others no matter how different they are, and most importantly to love Jesus who loves your children more than you ever can!


~B

 My sweet girls

My attempt to start the organization process

Our Normal Life

     When Breckin was born and in the hospital, I never would have imagined I would one day be writing a blog post with the word "normal" in the title. But, here I am 7 1/2 months down the road, talking about our normal life. Everyday, I am so thankful for the normalcy in our days. When I load up the girls to go grocery shopping, take them swinging at the park, or play with them in the pool, I am so grateful to get to do these things with them. When the four of us go out for a family dinner, or go for a walk around the neighborhood, I feel so blessed.
     Breckin had a cardiology appointment the other day, and her doctor commented on the fact that I had a tan. He said that was a huge thing because it meant I was actually able to get outside and live life. He had a resident with him and he explained to her that the first six months of a heart baby's life is very difficult, causing much stress and a lot of work on the parents. I told her this was definitely a true statement, but I am finally feeling normal again. I've been able to get out to the pool, go running three or four times a week, and spend a little time with some girlfriends. Can you believe I have even made it through a couple books this summer?!
     From the outside looking in, things with Breckin would probably not all be considered normal. Instead of making a bottle for her to take every few hours, we make a big batch of formula every morning to give in her tube feeds throughout the day. When we are able to give her a bottle, which is twice a day, we have to thicken her formula and even when she does sit and suck for 20 minutes, she takes only a little over an ounce. We are thankfully able to give her baby food now, but it's only once a day, and she takes about a teaspoon of food total. She has a standing appointment every week with a speech therapist and a developmental therapist who come to our house for an hour to work with her. Playtime consists of touching and feeling her toys, and listening to the sounds and the music. There is no "look at that, Breckin," or "ooh see the pretty colors."
     However, she gets eating time, playtime, and nap time just like any other baby. Every time she does a "normal" baby thing, we get so excited. In the beginning of Breckin's life, we had no idea what to expect. We had no idea what kind of quality of life she would have. However, I am here to say that she has an amazing quality of life! She is a happy, playful, interactive little baby. Every smile, laugh, and coo brings my husband and I the greatest joy. She rolls over, lifts her head, is almost sitting up unassisted, uses both hands to play with toys, and puts weight on her legs. All these simple little developmental milestones are huge leaps for Breckin!
     I do admit that when I see a baby look at their mom's face and smile, or suck down an 8 ounce bottle no problem, I get a little sad. These are probably two things my daughter will never do. However, she is exactly the way God meant for her to be, and I praise Him for this. I am constantly reminded of this in Psalm 139. This psalm was in my devotional this morning and it always makes me think of my sweet Breckin when I read it. The part that stood out to me this morning was verses 15-16: "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body." How could anyone read these words and not know that they are exactly who God wants them to be?
     I am thankful right now that God has given us a normal family life. I know there will be more days down the road where the stress and hard times will come. However, this is where we are now, and I am enjoying every minute of it. I sing the song, "God is So Good" to my daughters frequently, and it is a simple truth I want to instill in their lives. Even when things don't appear to be good, God is good!

Love,
Brooke

 This girl loves the pool

 Can't get enough of her sweet smile

These sisters have had some fun this summer

29 Days

     It has been a while since I've last posted, but I must say I've been a little busy. On April 21, we checked into LeBonheur Children's Hospital in preparation for Breckin's second heart surgery, the bidirectional Glenn. We had been preparing for this surgery pretty much since we left this same hospital in January. We have been documenting Breckin's oxygen saturation, monitoring her continued fatigue throughout the days, and continuing to see her cardiologist in his outpatient clinic. Finally, the day was here that we had been waiting for, praying for, and quite honestly dreading. We had settled into a routine. Breckin was sleeping through the night, and learning new things, like making different vowel sounds, holding her head up, and rolling from her back to her side.
      On April 22, after a few short hours, Breckin was out of surgery and recovering well. The surgeons came and spoke with us and said the repair went great and there were no complications. We were told we would have a five to seven-day hospital stay, and then would be heading home. Well, we knew that based on our history with our little girl, we would probably not have the conventional week-long stay like most patients. We were thinking maybe more like ten days to two weeks.
     Six days after Breckin's surgery, her condition started to deteriorate pretty rapidly. She spiked a 102 degree fever, her oxygen saturation was dipping into the 60s and not recovering even while on oxygen, and she was very agitated and pretty much inconsolable. We were woken up from sleep by our nurse, telling us that they were going to have to reintubate Breckin. They had tried every other measure to avoid this, but it had to be done to keep her alive.
     After a few hours, our surgeon and the attending cardiologist spoke with us and told us that they were taking Breckin into the cath lab. Her echo showed that her heart function was not great, and they were worried that her coronary artery could be the problem. The doctor that would be doing her heart cath told us that if it was the coronary artery, this could be a tricky situation since hers is about the size of a hair. When the anesthesiologist came to get Breckin, he looked at her sats, looked at me, and said, "This is serious." He told me she could stroke out, have a heart attack, have brain damage, etc. because she was so unstable. Then, I heard the words, "septic shock," and "ECMO." For those of you that don't know, ECMO is a machine that does the work of the heart and lungs.  It is basically a last-ditch effort for babies to survive when all other means have failed.
     There was a moment in that hospital room, when I was watching all these people around my baby, that I thought I was going to lose her. This was the second time in Breckin's short life that I was preparing myself to not be taking her home. I know that God is faithful and has a plan for her life, but I also know that she is ultimately His child. He gave her to me to care for, but He can also take her away. I was wanting to believe that He would bring her through this, but I also wanted to be realistic and prepare myself for the worst. After I had a chance to process all this, I posted an update on facebook so that I could get as many people praying for Breckin as I could. I cannot even tell you the amount of prayer warriors that came together to plead with the Father on her behalf. My post alone was shared by 30 people! God heard everyone's prayers and was in control in that cath lab.
     The doctors came to talk to us after the procedure was over and said that Breckin did great! She maintained her oxygen level, and there were no complications. They said her coronary artery was normal, and the heart repair from her surgery looked perfect! I silently praised Jesus, and then I hugged Dr. Kumar and thanked him profusely for the good news. I was truly overwhelmed by the peace that I felt and I could not send up enough praise to the Lord. I knew that Breckin was going to be okay, and that we would be taking her home.
     She still had a tough road ahead of her due to her getting a urinary tract infection and pneumonia. They later discovered that these infections were what led to everything going downhill. Two more weeks were spent in the cardiac ICU, and finally the day came when Breckin could be transferred to the floor! I have to say, I was a little sad. The nurses had taken such great care of Breckin, and of us. I just felt like they had come to know us, and we had gotten close to several of them. I knew this was the next step towards getting us home, but I would definitely miss everyone in the CVICU.

     After 29 long days, Breckin's hospital stay was finally at an end! Her stubborn left lung kept us there another week on the floor, and we had to go home on oxygen. However, we got to go home! One of our surgeons told me on the day of discharge to just take my baby and run-before anything else happened to keep us there. I was almost so exhausted that I couldn't even be excited. It was more than just sleep-deprivation, although that was a big part of it. But, it was mentally, emotionally, and spiritually exhausting to go through so many ups and downs. 

     Although this hospital stay was tough, it has truly made me appreciate so many wonderful "normal" parts of our life. Just being a family of four and seeing my two girls interact with each other, is amazing to me. I just bask in the everyday, mundane details of our lives, because for so much of Breckin's life, it has not been this way. 

     I truly feel so incredibly blessed to have this precious baby girl as part of our family. She continues to amaze me every single day. She has been through considerably more in her short five months than most people will go through in their entire life. Despite all the obstacles stacked against her, she continues to smile through the days. God has truly blessed her with so much more strength than I probably ever will have. This little girl is my hero, and I still cannot believe that God picked me to be her mom.

Love,

Brooke

     Right after surgery

    On the mend

    The sweetest little sisters

    Going home!