Roller Coaster Ride

 

Rocking with Mrs. Hilary!
Rocking with Mrs. Hilary!

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“I tell all my parents it will be like a roller coaster ride.  You will have ups and downs.”  This is what the sweet genetic counselor told us once she had delivered Lindsay’s diagnosis back in October.  I’m pretty sure I wanted to knock her in the teeth (or something like that!) My smart aleck self thought, “Oh, well, I am so glad you tell all your parents that!  But we are talking about MY child. When you are done, you get to go back to your little office and go on with life.  Ours has now been turned upside down. It feels as if we have already been on one long roller coaster ride ever since Lindsay was born.  With every test we would nervously await the results, and then be almost giddy when they would turn out positive.  I don’t know how much more of this ride I can take!” Of course I just cried, muttered something like, “I don’t want to raise a fifty-something year old,” and halfway listened to whatever else she had to say.

Discussing something very important!
Discussing something very important!

It is though; life is very much like a ride that takes us up, down, and sideways sometimes.  I have thought about that notion a lot lately. I just finished a book, Bittersweet,  by Shauna Niequist, that was recommended by a lady who is in the midst of her own roller coaster ride. (Shout-out to Katy! ) The premise of her book is much like the idea of this ‘up-and-down’ of life.  It is the idea that life will have times of sweetness and times that may be bitter.  Niequist says of her title:

“Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul.”

I think about that a lot when I feel really stuck down in the ‘pit.’ I then try to imagine that surely something good must be on the horizon.  Some days it is as simple as Lindsay clapping for herself when she sees her reflection in her mirror or just the way she looks at me.  Other days it might be laughing until I cry at Carter’s sleepwalking stunts or when Cason tells me he “grew a beard” while waiting for one of us to do something!

We have had a rough past few weeks after everyone in the house got the stomach “bug,” except for me. (After all, who else would take care of everyone?) 😉 As soon as one seemed to be well, the whole process would start over with another one. (At least two of them were courteous enough to have it at the same time!) Then after everyone finally seemed to be better, Lindsay had almost a solid week where NOTHING made her happy.  If you know her at all, you know this is completely out of character for her.  I got so frustrated several times because I could not figure out what to do for her, and, of course, she could not tell me.  I was just longing for everything to be back to ‘normal’ again.

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Mrs. Elizabeth and Lindsay playing the piano!
Lindsay's developmental teacher, Mrs. Liz and PT, Mrs. Carol
Lindsay’s developmental teacher, Mrs. Liz and PT, Mrs. Carol

 

Once we figured out (or think we figured out) the source of her unhappiness, she has been back to her joyful self!  She smiles as soon as she wakes up, whenever you pick her up, riding in the car, playing with her toys, etc. And oh, after a few hard weeks, how much sweeter it is!

I love how in her book, Niequist invites us to say thank you and celebrate when life is sweet and say thank you and grow when life is bitter. I firmly believe if we would practice this, the sweet times would become so much sweeter!

When we go through things in life that aren’t as easy as they ‘should’ be, don’t we always appreciate them so much more when they finally do happen?  For me I know that I might possibly have been the most excited person on Earth when I found out I was going to have twins and then again when I learned we would be having a girl! As I mentioned previously, it took a long time for us to experience that joy at all, so you had better believe we were going to celebrate every single second! When you have sat back and celebrated with friends who were having babies so easily while secretly dying inside to just experience a little of that joy, it is beyond sweet to finally know it for yourself! You can fill in the blanks of what that ‘thing’ is for you that you have wanted so desperately.  Who knows? You might still be waiting.

“You don’t know what the story is about when you’re in the middle of it.  You think you do, but you don’t. You make up all kinds of possible story lines: this is about growing up. Or this is about living without fear. You can guess all you want, but you don’t know.  All you can do is keep walking.”

I love that quote from Bittersweet. Isn’t it true? Sometimes all you can do is keep riding that roller coaster, even when it is uncertain or scary.  I am forced to face uncertainty and fear frequently whenever I have to do a six month “review” on Lindsay’s progress or think ahead to the fall when she will have to go to preschool in order to continue receiving her therapies. I hate not knowing what to expect or having to answer “no” to so many of her milestone questions. It’s a feeling of, “Let’s highlight all of the things she can’t do.”  But then, as sure as the roller coaster goes down, it comes back up again as she learns to do something new like willingly bearing weight on her feet when before she would just collapse!

Last week Mom and I took Lindsay to have a hearing test and a kidney ultrasound done, as there can often be issues with these areas as it relates to Pitt-Hopkins.  We think her hearing is fine, although it can be difficult to discern when she is not yet capable of following directions. She will be checked again in a few months to see if she might respond to some more sounds.  After the hearing test was an hour-long ultrasound! Of course, once again it brought a roller coaster of emotions.  We had expected it to take a few minutes.  As the technician kept looking while we held Lindsay’s hands and feet still, I just about lost it. Then one look at that sweet, precious little girl’s face, and I realized she was completely HAPPY! I am still amazed at how much she can teach me!

So what I am learning is this; we are ALL on a roller coaster, as much as I hate to admit it. We are not on the same one. Each is unique. But I also know that we will not always be ‘stuck’ going the same direction.  Shauna Niequist puts it beautifully as she says, “I don’t know where you are these days, what’s broken down and what’s beautiful in your life this season. I don’t know if it’s a season of sweetness or one of sadness. But I’m learning that neither last forever…It won’t be sweet forever. But it won’t be bitter forever either.”

Whatever you are going through-whether it be the loss of a loved one, a cancer diagnosis, a miscarriage, a broken marriage, or a child with “disabilities,” know that you are not alone.  As much as life is a roller coaster, God is on the ride with you. He will never let you go.

God is our refuge and strength, an ever-present help in trouble.” (Psalm 46:1)

The lyrics to the song, “Never Once,” by Matt Redman have been sort of an “anthem” for me when driving to and from many doctor’s appointments.

Never once did we ever walk alone/ Never once did You leave us on our own/ You are faithful, God you are faithful.

Until next time…

Laura

 

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Sometimes, you've just got to take your clothes off!
Sometimes, you’ve just got to take your clothes off!
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If you’re happy and you know it…

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"Fearfully and wonderfully made!"
“Fearfully and wonderfully made!”

 

Plans Change

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.” (Jeremiah 29:11)

I love a good plan.  I like order, and I like to know what is going to be happening today, tomorrow, next week, next year,…etc.  If there truly is a “Type A, ” I would probably get an “A+.” I think for us “planners,” order and organization give us some sense of control in our lives.  We have all heard the saying about what God does when we tell Him our plans! I imagine He has had plenty of material from me over the years!

Growing up, after a very short time of thinking I wanted to be a nurse (until I realized what they actually DO), I knew I wanted to become a teacher.  After all, I lived with one! I used to come home every day and line up all my dolls, teaching them what I had learned that day. My mom would always say she knew exactly how the teachers would talk to us, because I repeated everything they said to my “students!” I stuck with my plan, as I went to college and earned a degree to teach grades K-8.  I was so excited to get my first job, even though it was across town and completely different from my upbringing in a private Christian school.  I went on to get my Master’s degree a few years later, fully planning to teach ‘forever.’ During this time I decided that whenever I had children, my mom would just ‘conveniently’ retire in order to stay home with them. (I’m not actually sure if I discussed that plan with her. 😉 )

Plans change.

After struggling to be able to have a baby at all, I finally learned I would be having two!!  The closer I got to actually having the boys and because it had been difficult to do so, I quickly realized there was no way I was going back to teaching for awhile once they were born! Sure, I went through questioning myself and wondering why on earth I invested all of the time and money to get my graduate degree only to walk away.  I reassured myself that I could always go back if I wanted to or if it became a necessity for our family. 002

I would not trade my time at home with my boys for anything.  When they were six weeks old, I remember crying at even the thought of having to go back to work and was so grateful to have that option at the time. I will say that each year when school would start back again, a tiny part of me would miss all of the supply shopping, room decorating,…etc.  That feeling would pass pretty quickly, though, when I realized how much I loved my new job as a mother!

After a couple of years I started realizing that I would love to have just ‘one more’ baby.  Again, I did not plan for it to take as long as it did, and I had no idea I would have two going to kindergarten just a few weeks before I welcomed number three!  Looking back now, I see how God worked out the details perfectly as I could spend all of the time the boys were in school getting to know my new baby girl.  Having her also eased the pain of letting my boys take the first of many steps into independence.

When we found out we were having a baby girl, we were all just elated!  I had always, always wanted a girl.  I had her name picked out probably as early as middle school, because I thought how neat it would be to have my daughter use my maiden name. My mom and I got busy shopping and picking out all of the fun little girl things we had dreamed of being able to get for years.  I had the most fun picking out every detail of her nursery, discussing at what age we should take her to the American Girl doll stores and just dreaming of us being the best of friends one day. nursery 011

Plans change.

By now, you know part of Lindsay’s story.  I know part of Lindsay’s story, but I do not know it all. I know that some of my plans have and will continue to change.  Instead of going on play dates and doll shopping, we spend a lot of our time in and out of different therapies.  But, you know what? I do not imagine any of the mothers I see when I take Lindsay to therapy ever once had it in their plans to be there either. No one dreams that when they grow up, their job will consist mainly of driving to and from places designed to help their children do what comes easily to most. I did not get a degree in this.  I am not trained in this, nor did I plan on raising a child with “special needs.”

For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”(Ephesians 2:10)

This verse was brought to mind one day this week as Chip and I were talking, and he said, “You know, it’s like you were made to be her mom.” I told him I had been thinking about that very thing recently, as I had been reflecting on how so many of my plans of what I thought I would be doing have changed throughout my life.  I’m sure that is true for a lot of us.

Each night at the boys’ bedtime, I like to read Jesus Calling for Kids with them.  Much of what we read and discuss from the daily devotionals centers on trusting God’s plan for our lives.  I include it in every prayer with them as well, but I have to admit it has taken awhile to “practice what I preach.”  When I cannot make sense out of things that happen,  such as untimely deaths of friends and family, diseases, and syndromes, it is harder to focus on HIS plan.  I have learned that not once has He told us we always get to understand His plans.  Sure, we may see glimpses of how He has worked details out in our lives that were different than what we originally thought best, but we might never see His entire plan.  We are simply to trust.

From now on, as much as my “Type A” self loves to organize, plan, and make sense of my world, I must acknowledge that I am not in control. I have to focus on one day at a time. I am learning to be flexible even though I do not like to “bend.”  I have people ask me somewhat regularly if I think I might ever go back to teaching.  I have no plans to do so at the moment; however, I also have learned I am not a great “planner” after all!  So I will go on trusting that God has me right where he wants me for this season in my life.  I have a little girl who needs me.

Plans change.  And that’s okay.

Until next time…

Laura

**And because this is supposed to be a blog about Lindsay and what she is doing, enjoy some examples! more iphone 031 more iphone 057 more iphone 075

What I’ve learned (and relearned) this year…

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As this, one of our most challenging years so far comes to a close, I have spent a lot of time thinking about some of the lessons I have learned (and learned again) along the way.

1.  You never really know what someone else may be dealing with in their own lives.

It is so common to focus only on what is relevant in our own world, that it becomes easy to overlook the struggles of others. I know I have probably misjudged people before if maybe they didn’t speak, weren’t the easiest to talk to,…etc.  I have learned through my own experiences that sometimes-people are just trying to make it through the day without falling apart. No one has it all together!  I need to practice more understanding and certainly more grace.

2.  “It’s all small stuff!”

Growing up, we used to hear my dad say, (A)”Don’t sweat the small stuff.” (B) “It’s all small stuff.”  He would say this anytime one of us would worry about something, whether it be big or small.  It used to drive me a little crazy because to me-everything was a huge deal.  Even when it wasn’t.  As I’ve gotten older, I realized he really was just reminding us that all of the little things we would allow ourselves to “get worked up” over were just that,little things.  In other words,“Who of you by worrying can add a single hour to his life?” (Matt. 6:27) That philosophy and that verse have helped me so much this year in prioritizing what things are ‘big’ and ‘little,’ and how to better deal with both.

3. There is always something for which to be thankful.

Some days you just might have to look harder than others like on the days I’ll observe another child much younger than Lindsay easily walking, talking, playing,…etc.  I have to stop myself from becoming overwhelmed again with the “whys, what-ifs”, and that awful word-jealousy. I then remind myself how far she has come, how lucky she is to have the best therapists, medical care, and family available and so close by.

I was reminded once again just last week about such thankfulness when we were at Vanderbilt Children’s Hospital.  We had just finished with Lindsay’s swallow study, and I was feeling a little frustrated with the results.  As we were waiting for her next appointment to have an EKG, I walked up to the gift shop to kill some time.  On the way I noticed numerous mothers pulling their children around in wagons through the hospital.  Some of these babies had clearly been there awhile and were attached to various tubes and such.  Many would likely be there throughout the Christmas season and beyond.  I immediately snapped out of my temporary “pity party,” and thanked God that after Lindsay’s next appointment, at least we would get to go home.  The fact that her heart looked great in that appointment gave us one more reason to be grateful!

4. Laughter really is the best medicine!

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We laugh A LOT in this house.  I unfortunately/fortunately inherited the ‘gift’ of sarcasm.  I find it nearly impossible to not be sarcastic at times!  One of the reasons I loved teaching third graders for years  was that they were at the perfect age to really get it! We would have so much fun going back and forth with each other.  Not only have both of my boys inherited this ‘gift’ as well, but they are just plain funny sometimes!  Allow me to share a few examples of what occurs daily in our house.

The boys have a “tradition” of getting a pizza with Chip every Sunday night.  One night as they were eating Cason said, “I take my pizza very seriously.” He was completely serious!  Along those same lines, Carter finished eating some Sweet CeCe’s one day and said, “That ice cream’s in a better place!”

Cason was studying his spelling words one night and came to the word ‘against.’  He pronounced the word like it looks and then said, “You know, like you ‘gainst’ too much weight!”

A few weeks ago while Carter was taking a shower, he asked me if he could stay in a little longer because he “needed some man time!”  A few days later, he asked, “Mom, what are we?”  When I asked what he meant he said, “Like reptiles, or something else?” One of my favorites was one day when he announced that “It’s called a restroom because people sit down and read the paper and fall asleep!” Finally, one night Carter plopped down on the couch and said, “Oh couch, we’ve had some good times together!”

Our boys give us plenty of material to keep us laughing on days when we desperately need it.  Laughter has gotten us through a lot of hard days this year, and I plan to continue doing so!

5. I am stubborn.  And independent.

This will come as a huge shock to those who know me well. 😉 I have to say though, I have been this way as long as I have been alive!  One of my mom’s favorite stories to tell about me is from one Christmas morning when I was a little girl (3 or 4).  After we would wake up to see what Santa had brought us, my entire extended family would go have breakfast just down the street at my grandmother’s house.  Once we had eaten and opened gifts at her house, I kept complaining to my mom that I wanted to go home to play with what Santa had brought.  Tired of listening to me, she said something along the lines of, “Well, go home and do it then!”  So naturally, I put on the skates I had just received and was skating down the street on my way home when some nice man retrieved me and brought me back to my grandmother’s!  He rang the doorbell and asked if anybody was missing a little girl!  We have laughed and laughed about that over the years, but it was just a tiny indication of things to come!

While these two qualities have certainly gotten me in my fair share of trouble through the years, I truly feel God has also been using them to prepare me for what He knew to be in my future.  He has also been refining me along the way.  Were it not for my stubborn nature, I would have probably just accepted that Lindsay had little hope of succeeding.  Ever the one to want to ‘prove doctors wrong,’ I am determined this child will defy any limitations placed on her.

Now, the independent part of me is still a work in progress.  I do not like to feel as though I am ever a burden on someone, so often I will refuse help when it is offered.  A lot of sweet friends this year have helped me begin to see that when people offer to do something for me, they WANT the opportunity to serve.  I’ll just say-I am trying to do better at graciously accepting offers of love.

6. Prayer matters. 

I know.  That sounds ridiculous coming from someone who has grown up in ‘The Church.’  I have always prayed and believed in its power, but until this year I have never felt so much comfort from the prayers of others.  When Lindsay was first diagnosed, Chip and I were both wondering, “What is there left to pray about? Does it even matter anymore?”  Let me tell you, it does. It matters. Prayer changes things. It brings people together for a common purpose. Sometimes it seems as though we want to see something tangible in order to prove God answers prayer.  Well, I have.  Since beginning this blog, we have received word of prayers from so many people right here in Nashville and literally around the world in places like El Salvador, Nicaragua, and Honduras. Lindsay has begun doing things in therapy that she has been trying to do for months.  She has started pushing up from the floor to sitting, tolerated being in her “stander” for over an hour at a time, and she is ‘talking’ more in her own way every day.  She is determined!  She is proof that your prayers to our Heavenly Father matter. Please don’t ever stop believing in the power of prayer.

Thanks for staying with me as I share what important lessons I’ve learned in 2014.  I hope you have time to reflect on what God has taught you this year as well.  Here’s to more learning, loving,  and living in the New Year!

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Mrs. Carol helping Lindsay get fitted in her stander. About a month prior, Lindsay would NOT cooperate. Now look at her!!

Until next time…

LauraIMG_1684

 

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Practicing in her stander at home!

 

 

Just Enough

Working hard on standing!
Working hard on standing!

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Fun battling it out over toys at therapy!
Fun battling it out over toys at therapy!

 

*First, let me say how humbled I have been and continue to be to so many who have reached out to let me know they are praying for us and our precious girl.  I cannot begin to describe how comforting it is to know we are not alone.

Initially after Lindsay’s diagnosis, I wondered, “Will I ever smile again?” I’d notice people just going about their days as if the whole world hadn’t just been turned upside down.  When I mentioned before that I grieved for at least a week, I am not exaggerating. I cried due to anger. I cried because I was hurt. I cried because of all of the things I wondered.  “Will she ever be able to say my name?” “What if she cannot tell me how she feels?”  “What does she understand?” “How will people treat her?”   I used to try to imagine how hard it would be whenever she might get married one day,…etc., and now I feel as if that dream was just taken from me.  The worry and ‘what-ifs’ can be paralyzing if you allow them.

At some point, though, I remember thinking that I have no choice but to get back up and keep going.  I am still a wife, a mother to two other children, and I am Lindsay’s biggest advocate.  I have to do this.  Even if it’s hard. Even on the days I’d rather curl up in a ball and cry. I cannot just let the worry and fear consume me.  My boys deserve a mother that still acts silly, makes sure their homework gets done, and is certain they feel ‘heard’ and valued, as well.

Pure joy!
Pure joy!

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I realized, too, that just as He did with the Israelites in Exodus 16, God provides just enough “manna” for each day.  He gives me what I need one day at a time. One example, as silly as it seems, was Carter scoring his first (and only) two soccer goals two days after getting our news.  I was probably more excited than he was!  It wasn’t about the goals.  It was about my realizing that God would allow me to experience joy again. The following day, we attended the Walker Run, to help continue  supporting our friend Sara’s mission.  Before the race began, Sara’s father was leading a prayer that involved everyone raising his/her hands in praise.  I remember watching as Carter and Cason raised their sweet little hands and worshiped unashamed in the middle of that large crowd.  Instead of tears of sadness, I cried tears of joy for the first time in awhile. How God knew I needed that! Yet another time, Cason came running downstairs to tell me, “Mom, Lindsay just said, ‘n-n-o-o!”’ Now, I knew she was simply playing with sounds and did not realize what she was saying, but it still gave me joy! I looked at Cason and said, “You know, some doctors are saying that Lindsay may never walk or talk.  We are going to help her do both, aren’t we?” He just looked at me as if that were the most absurd thing he had ever heard.  He grinned, nodded, and ran back upstairs to continue playing with his sister.

Whether it is through the words of people that are praying for us, new things that Lindsay accomplishes in therapy, the support of our friends and family, or the hilarious things my boys do and say on a daily basis, God has proven faithful in providing just enough of His grace each day.  His mercies are new every morning!

A few weeks ago, my sister-in-law sent me a text asking if I had heard the song, “When My Heart is Torn Asunder,” by Phil Wickham.  It took me awhile to finally listen, but I just love the lyrics.  I wanted to share a few.

When my heart is torn asunder and my world just falls apart               Lord you put me back together and lift me up to where you are.’

Chorus:

There is hope beyond the suffering, joy beyond the tears                         Peace in every tragedy, Love that conquers fear

I have found redemption in the blood of Christ

My body might be dying but I’ll always be alive

Until next time…

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Welcome!

These boys adore their sister!
These boys adore their sister!

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For awhile now, I have quietly prayed about whether or not I might  share our story with others than just those closest to us.  I am very much a private person, so I have struggled with what/how much information I wanted to be known.  It’s scary to  put my thoughts into words even for me sometimes, so it’s even scarier to share that with others.  However, I wanted a place that I could chronicle events about Lindsay’s life that I will have forever.  I look forward to being able to access this journal years from now to see just how far God has brought her.  I am honored to have you join us as we navigate this journey with our precious girl one day at a time!

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Laura

The beginning…

She is determined!
She is determined!

October 2nd of this year is a day I will never forget.  We had the appointment to see a geneticist at Vanderbilt scheduled for months.  All I knew was that she would shed a little light on what we had learned at the beginning of the summer; Lindsay has a partial deletion of chromosome 18.  I honestly thought we would hear to keep doing what we had been doing, and Lindsay would continue to progress at a much slower rate than is “typical.” What I had not prepared to hear was that, “Most people with her condition will never walk, talk, or be able to live independently.”

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While we had been trying to determine the cause of Lindsay’s global motor and cognitive delays since around 9 months old, I never expected such a drastic prognosis. It seemed as though every procedure she had endured up until this point had turned out in her favor. After testing for Cystic Fibrosis, swallow studies, a brain MRI, head CT, bronchial scope for breathing issues, and a multitude of blood work over much of her first year, it was ultimately the comprehensive blood testing done around April/May that highlighted this deletion in part of her chromosome.

So while we knew the deletion was certainly the cause for a lot of her issues, we did not know specifics of what that may mean for her future.

Getting some love from "Buelo!"
Getting some love from “Buelo!”

My mom accompanied Lindsay and me to the Dr. this day, as the nature of Chip’s job is such that he could not.  We learned that Lindsay’s portion of chromosome that is missing is 18(q).  Individuals that have this particular piece of chromosome missing are also considered to have Pitt-Hopkins Syndrome. At this point, I have not done any additional research on the syndrome, because I honestly can only “handle” so much at one time.

I don’t know who cried more in that exam room-my mom or me. I remember getting Lindsay to the van in the garage at Vandy without really being able to speak.  Before I put her in her seat, I just held her and sobbed, “What on earth did she do to deserve this?”

Over the course of the next week, which was the boys’ Fall Break from school, I just grieved and “went through the motions.” I wish I could say that I never questioned God…”Why me? Why us? Why her?” I can’t.  I knew in my heart that God wasn’t  punishing us, or her.  But, in order to be completely transparent, I have to tell exactly how I was feeling at the time.

While I’ll never understand why sometimes children have such overwhelming difficulties this side of heaven, I have learned God uses so many people to stand with us in this earthly walk.  Four ladies whom I would have probably never otherwise met, have become so very dear to me and to her.  While their occupations are to help Lindsay each week with Occupational therapy, speech/feeding therapy, and physical therapy, they are so much more than that.  They have let me wrestle with trying to understand, cope, and some days-just let me cry.  They never let this ‘diagnosis’ determine her capabilities going forward.  They see it “all,” and they witness firsthand the miracles that God allows to happen every day.

We are currently in the place where we are set to do whatever it takes to help her fulfill her greatest potential.  We know God has mighty plans for her, and we are grateful for the blessing she is to everyone who knows her.

For now, I’ll close by saying I am honored that HE has chosen me-chosen us– to be Lindsay’s earthly parents. He must love us so!  Out of anyone in this world HE could have chosen, we have that privilege!  He placed her in a family with two brothers that adore her. They are so precious with her, and get so excited with every single tiny accomplishment of hers.  Because of Lindsay, I know they will develop such tender qualities as they grow. To know Lindsay is to love her…just ask her proud grandparents, aunts/uncles, and cousins!

Thank you for joining us on this journey as we watch and wait for Lindsay to become all that God has created her to be.

Happy girl!!
Happy girl!!

Until next time…