Mack's Mom - Joubert Syndrome & Ocular Motor Apraxia

Sunday, July 2, 2017

A goodbye to 'Mack's Mom' and a hello to new beginnings

I began blogging (and putting videos on youtube) for 2 main reasons- to keep track of Mackenzie's progress and to update friends and family especially during her early years when we had doctor's appointments quite often. I had no idea that the blog and youtube videos would be seen by so many around the world (and that I would get messages quite often from parents going through similar journeys).

I am thankful for the connections we've made through sharing Mackenzie's story, locally and around the world. Mackenzie's story has encouraged many and many have encouraged us. I have a very close friend (we've never met but hope to meet in the near future) who contacted me this past year because she came across this blog. She has daughters similar to Mack. We text on a daily basis and talk on the phone often. This blog has also helped us become close to our Joubert Syndrome family (where I also gained close friends who I talk to often). 

But as Mackenzie gets older, BJ and I want it to be her choice to continue to share her story- not ours. And for this reason I have decided to step away from Mack's mom blog. 

We state many times how we've learned so much through parenting Mackenzie. She is on the 'mild' end of the spectrum with Joubert Syndrome so we've seen what it's like to parent a child who doesn't do things in the "typical" way, but we've also seen her hit milestones (just a little later than the norm). We've watched her never give up. We've learned that determination goes a long way. 

We've gone through many phases the past 7 years of parenting. Two years ago I felt like I hit a wall. I questioned everything. I didn't feel like I (or Mack, or we as a family) fit in with anyone. I kept searching to find someone to relate to. But over the past 2 years, I realize that God continuously places people in my life to show me that even though our family 'situation' may be unlike anyone else's, I can still relate to those closest to me. I've realized that we all have our struggles. But it's up to me as to how I handle those struggles - comparing to others will essentially get me nowhere. 

I know God allowed me to realize so much in order to help Mack realize the same as she gets older. Instead of looking at Mack as one who "struggles", who has "learning disabilities", who has "special needs"- I look at her as being unique because that's what I want her to see herself as. I want her (and others) to realize that all of us are different in our own way. But that it's never ok to look at or treat someone differently. And even though the plan for our life doesn't always turn out the way we imagined and even though we may encounter our share of struggles, it's still well worth living. Especially since those struggles end up being blessings in disguise. 

Thanks for all of the love and support. God has truly blessed us. Hopefully you'll be hearing from Mackenzie in the future. 😉

-BJ, Whitney & Mackenzie

Tuesday, February 7, 2017

Patience patience and add a little more patience

We went to the park earlier today. Mackenzie has become quite comfortable playing on playgrounds in general. But she does tend to avoid certain areas (or asks for our help on monkey bars, a small wall climb, fireman's pole, etc). She doesn't become frustrated often and honestly, I am the one who loses patience more than I would like to admit. I wish for her to have certain things come easier to her. But the reality is, every one of us struggles in some way or another.

Several weeks ago we went to the same park as we did today, and I ended up posting this on my personal IG/FB. My feelings from today are identical to this one.

“Earlier today Mack watched kids rock climb at the park. She decided to give it a try. She continued to watch kids climb up and down it while she tried several times (making it clear she wanted no help from me). She got scared when she first got off the ground. But she kept trying. And even though she decided not to go much off the ground, she looked at me and said, ‘Mommy, you have to take a picture to send to Daddy. Look what I did by myself!’ Thanks to Mack and a friend for reminding me to focus on Mack’s individual accomplishments and not what others around her are doing.”

Today I sat on a bench while BJ played with Mackenzie. And I was able to sneak a video. The video is almost 3 minutes long (but worth every seconds of watching!). It shows Mack trying to balance herself from going from one round 'stone' to another. And it shows her wanting to do it all on her own. I admit- I wanted to go give her a hand to help her to the next (I love how patient BJ was the entire time!). At one time she did hold onto his hand but only to figure out how to balance better. 

And just like always, Mack's excitement when she accomplishes this makes me so proud! She continued going back and forth the two to the point where she was doing it with quite ease.

I think I started off Mack's life with a lot more patience than I have now. I've spent this evening looking at videos pertaining to Mack's progress from crawling to walking. And I noticed how patient I was in the videos. I will post a few videos below (and share links to more videos in case you're interested- which I think they're worth checking out:)). 

Mackenzie started 'crawling' around a year old. She scooted on her belly (she was over 18 months old when she was crawling the 'typical' way). 

She started pulling up in her crib at 18 months old. 

And soon after she started to be able to use a toy walker to take a few steps (Walking with toy walker - 18 months old). Fast forward 4 months and she was getting steadier while using a toy walker (Walking with toy walker- 22 months old). Then came cruising around her pack-n-play (Cruising 24 months old). 

To taking her first steps at 25 months old!

It took her a few months later to comfortably walk 10+ steps (Walking - 28 months old), then a month later she started walking from room to room (Walking around the house- 29 months old). 

At 2 1/2 years old (at the end of a 10 day vacation at the beach) Mack decided to take off on the beach). 

I share all of the above (partially because it's helping me remember some key milestones) but also to show the progress it took Mack to go from crawling to walking. I could continue sharing videos from the time she was 2 until now (I'll save that for another post:)). 

And all of this progress took patience on her end and on mine. Parenting has been a journey for us. It has had it shares of excitements and frustrations. But today I was reminded that asking God for a little bit (and sometimes a lot) of patience will go a long way. It will help keep our focus on Mack as a person and where she's at in life (not where society expects her to be). And it will make our journey quite enjoyable. I was reminded, while watching her today at the park and then watching these videos, how enjoyable it has been watching Mack hit so many milestones all in her own time. 

No matter how fast or slow a child progresses in any given area, we need to make sure to always cheer them on. To teach them to have independence and determination. To celebrate each and every milestone- no matter how big or small they may be. To lend a hand when needed but to not be so quick to lend a hand too soon. And to have PATIENCE. 

Thursday, November 10, 2016

Embrace the Journey

3 parts of my life that I didn't think I would ever encounter:

1. Having a child who isn't the "typical" child

2. Having an only child

3. Homeschooling my child

I never imagined that our child could teach me so much in the short 6 1/2 years of her life. But she has. And I'm certain she will teach me so much more as time goes on.

I've mentioned many times before how this life isn't the life BJ and I imagined we would have. We've gone through ups and downs over the course of our marriage (just like everyone does), but I would have to say this past year has been one that I will always remember.

I probably don't have to tell you that the 3 things listed at the beginning are things that others feel the need to give input on- and sometimes it seems like I get input on a daily basis. Take just 1 of the 3 and you end up getting unsolicited advice from anyone and everyone. Then mix all 3 together and you can imagine what type of advice (and criticism) is given. Unfortunately, I allowed what others thought and said to consume me. I found myself questioning every little decision we made as a family. The end result- obviously lots of stress and anxiety.

This past year, in particular, was a year of questioning. A little over a year ago is when we decided to homeschool (along with deciding to end speech and physical therapies). I started really focusing on what Mack wasn't doing (which resulted in frustration on her end and mine). Nothing was going the way I thought it was suppose to be going. There were nights (too many to count) filled with tears (again, on her end and mine). I knew in the back of my mind that I should be thankful that Mackenzie was progressing so well. That she was on the 'mild' end of the spectrum with Joubert Syndrome. But I still focused on her daily struggles and kept wondering what the future held. I started feeling quite alone since I didn't think anyone could relate to what we were going through.

But slowly over time, I saw that God was placing people in my life to remind me that I'm not alone. I started realizing that even though a person/family isn't going through exactly what we are going through, that we can still relate and learn from one another. I have reconnected with childhood friends who are currently homeschooling, gotten to know moms in our homeschool community, and have been so encouraged hearing them share their stories. On top of those connections, God used my life prior to Mackenzie to help get us to where we are now. I worked with adults with disabilities before becoming a stay at home mom. All of the knowledged I gained from working, plus the connections I've since then made in the community with families dealing with having a child/children with a disability, have helped guide me through Mackenzie's diagnosis.

My last post was only my 3rd one of this year. I had pushed aside blogging and even got to the point where I thought maybe I would just delete my blogpost. I started drifting away from anything to do with Ocular Motor Apraxia or Joubert Syndrome. Once again, I just didn't feel like I could relate to anyone. But after writing my last post on our journey to getting Mackenzie's diagnosis, I received messages from others stating that they were able to relate to our story. It made me realize how important this part of our life is. I never want Mackenzie's diagnosis to define her. But I also don't want to push it aside. It's part of our life. A huge part of our life. Our Joubert Syndrome family is like no other. The conferences we have attended are beneficial. And even though no two children are alike who have Joubert Syndrome, we understand one another. I never thought I would be connected to so many people throughout the world (and people from so many different backgrounds). It is unreal the connections we've made. It is neat to know that Mack will have so many friends from all over the place- so many friends that she will be able to relate to.

My perspective on life is changing. I had gotten to the point where I was focused so much on the struggles but now I'm realizing that it's much better to focus on the opposite. And because of that, I am able to enjoy so much more of who Mackenzie is. I use to not enjoy sharing Mack's journey, however, I've recently found myself sharing Mackenzie's story in such a positive way- letting others know how blessed we are to have such a unique daughter which has resulted in many close friendships and being a part of a life I never knew existed. I know we have quite the road ahead of us. Mackenzie is going to encounter her share of struggles. But she will overcome those hurdles just like she has already done many times. God will place people in her life to encourage her just like He has in my own life. Sometimes Mack may need me and BJ to advocate for her. We've already had to be a voice for her which, at times, has been very hard for me to do. But like I've already mentioned, Mackenzie has taught me to not focus on what others think and to do what is best for our family. And the way BJ and I respond to life's struggles will impact the way Mackenzie responds to struggles.

I shared this picture in my last post and I will share it again.

This is in my living room- the room we spend most of our time in as a family. 'Embrace the Journey' is a perfect quote for us. I know that the future will hold so much that I thought I would never have to encounter. I know that I will probably shed many more tears and have to witness my daughter doing the same. I know that life isn't going to be easy. But it's the life that God has so graciously blessed us with. And I am extremely thankful for that. Our prayer for Mackenzie is that she grows up realizing that God created her to be a unique, special, beautiful individual. And that she embraces exactly who she is. Because I know that her story is going to be a blessing to so many around her.

Our prayer for Mackenzie is that she always remembers that she is "Fearfully and Wonderfully Made".

I had music on earlier while I first sat down to begin typing this post. And just like many times before, Laura Story's 'Blessings' came on. It always seems to play when I need it the most. I know I've shared the lyrics with you before, but it's worth sharing again.

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

Tuesday, November 1, 2016

Mackenzie's Journey: Part 1- Her diagnosis of Ocular Motor Apraxia and Joubert Syndrome

These next few posts have been in the back of my mind for quite some time but I haven't taken the time to sit down to even begin. We recently moved and while packing I came across a large box of papers from doctor's appointments, notes from therapists, notes that I had written, and the list goes on. It brought back A LOT of memories. And made me realize that the past 6 years has been far from what I imagined my life as a parent to be.

I begin with part 1: explaining Mackenzie's diagnosis more from the medical aspect. The upcoming posts will be on her milestones and then on our take as parents in this entire journey.

I'll begin with this adorable picture:

1 day old

Mackenzie was born March 2010 - 9lbs 3 oz and 23 inches long (we didn't get much use our of newborn clothes/diapers!). She was a week overdue and we were ready to meet her! The labor was far from ideal. There were some complications (but nothing serious) and after spending 18 hours in the hospital, she finally decided to make her appearance. There were no major concerns with her. She had jaundice, but by the time we left the hospital, she was overall healthy.

She nursed till right before she turned a year old. She didn't take a bottle- we tried numerous times but never had any luck. We started foods at 6 months (avocado was her first food and still a favorite of hers!). I made the majority of her baby food. She was (and still is) a good eater. Below is a video of Mackenzie eating one of her first foods, avocado.

It was at her 9 month check-up (December 2010) when it all began. Her pediatrician asked if I had any concerns. I mentioned that Mackenzie was rolling over some but not sitting up on her own (in fact, we had to place pillows all around her because she would easily lose her balance if we put her in the sitting position and would hit the ground hard). She wasn't trying to pull up and was far from crawling. The pediatrician recommended that we set up an appointment with a developmental pediatrician at our hospital's neuro-developmental clinic. I didn't think much about it. I even remember texting BJ (who we were going to meet for lunch after) to tell him that we would be a little late due to waiting for the office to set up an appointment with a developmental pediatrician. BJ didn't have the same reaction as I did. He immediately called questioning why they were referring Mackenzie.

The following month we went to the appointment at the neuro-developmental clinic. The clinic consisted of the developmental pediatrician, a physical therapist, and nurses. Everyone treated us and Mackenzie so well. They went through questions about Mack's development so far, her eating habits, the PT assessed her in many areas (not just with her mobility), etc. They had concerns saying she had mild developmental delays. The pediatrician mentioned Mackenzie's eye movement (which we had somewhat noticed already). Below is a picture explaining it as best as possible- she looked out of the corner of her eyes quite often.

7 months old

We hadn't thought much about the eye/head movement until this appointment. We were referred to a pediatric neuro-opthalmologist which we saw the following month (January 2011 when Mack was 10 months old). We were told that Mackenzie's vision was perfectly fine but that there was concern with her eye movement/looking out of the corner of her eye. We were told to come back in June for a follow-up. Over the next several months Mackenzie continue making progress with her mobility. It was slower than the 'norm', but it was progress nonetheless. I will touch more on the milestones she hit in my next post, but she started with what we called the 'army' crawl around 11 months old. She wasn't able to sit up on her own (like I mentioned earlier, we would have to surround her with pillows when we put her in the sitting position because she would easily lose her balance and hit the floor hard if nothing was there to break the fall). We began to notice that she understood all that we said, and she tried her best to communicate back to us. We did simple sign language with her which helped alleviate frustrations.

In April 2011, shortly after Mack turned 1, we had another appointment with the neuro-developmental clinic. We were told (for the first of many times) how determined Mackenzie was. They did their standard assessments on her and stated what we had already been told- she was behind on her mobility and fine motor skills but continued to make progress.

It was in June 2011 that things became more stressful. We had our follow-up appointment with the opthalmologist. We initially thought it would be a quick appointment. The doctor mentioned Mack may have Ocular Motor Apraxia (which obviously was quite foreign to us). She said she had never seen a patient with it so she would need to do more research before making the diagnosis. I went home and began researching. There wasn't much out there besides a few scary research papers talking about a child being diagnosed with OMA and then eventually finding out that he had a brain tumor (thankfully there is much more information via google even though it's only been 5 years since I first did the research). Within a few days of our appointment the opthalmologist called saying she wanted to set up a brain MRI for Mack. We weren't quite sure how to feel about this. Mack needed to be fully sedated which was scarier than the MRI itself.

After the MRI

We waited a few (very long) days to hear back from the MRI. The results showed that everything was 'normal'. During this time, Mack's primary pediatrician had us go to Duke's Pediatric Eye Center for a 2nd opinion. We took a copy of the MRI with us, but they said there was no need to read it. The doctor confirmed the OMA diagnosis and said she wasn't fully sure why Mack also had developmental delays but they may not be related. I questioned all of this (along with the MRI reading). Mack's MRI reading stated that there was underdevelopment but it was due to the maturation of the brain (since Mack was only 15 months old). Something didn't seem right so I kept searching for answers.

During this time we also began the process of Early Intervention. After several assessments Mack began physical therapy in August 2011 at 17 months old. Shortly after, a vision specialist began seeing Mack. Soon after that, I pushed to start occupational therapy. And by December 2011 Mack began speech therapy. We had a very busy schedule. We had therapists in and out of our home several times a week until Mack turned 3 years old and aged out of Early Intervention. Once she aged out, we began taking her to physical (once a week) and speech (twice a week) therapies up until she was almost 5 1/2 years old when we decided to call it quits and take a break from therapies.

Now to jump back to 2011...Mack had another appointment at the developmental clinic and was referred to a geneticist and an orthopedic doctor. The initial appointment with the geneticist was scary. They tested Mackenzie for ataxia telangiectasia. We made the mistake to research that one while we were waiting for the results to come back. Google it and you'll see why it was very stressful. We were obviously quite relieved when the results came back showing she didn't have it. We continued to see the geneticist every several months. They did a micro-array seeing if they could find any type of mutations in her genes and that came back 'normal' (little did we know that Mack did have a genetic condition).

The next several months was when we truly saw God's hand in everything. I took Mack to the pediatrician because she had an ear infection. Her primary pediatrician wasn't available so we saw another doctor in the same practice (who is now her primary pediatrician due to the first one retiring a year ago). I honestly have no complaints when it comes to both of these doctors. They have always done all they can do to make sure Mack is/was properly diagnosed and referred her to incredible specialists. During this particular sick visit, the pediatrician asked if I minded if he looked through Mack's chart (since they were 10 times larger than most 18 month olds). Of course I didn't mind! He then asked if I wanted him to refer Mack to specialists at University of Virginia. And of course I didn't mind that either- I still was searching for more answers from the MRI. He made a referral for another neuro-opthalmologist and a pediatric neurologist. So we went to see a neuro-opthamologist at UVA in January of 2012 (2 months shy of Mack's 2nd birthday). It was a couple hour long visit resulting in the doctor agreeing that Mack has OMA but that he didn't feel the developmental delays were related to it (we still didn't understand why doctors kept telling us this since those I had connected with via a FaceBook OMA group stated that their children had delays as well. It made sense to us that they had to be somehow related). He took our copy of the MRI to keep on file but didn't have anyone look at it. We had a very sweet resident student sit in during the appointment who gave quite a bit of encouragement and did her best to entertain and keep Mack happy.

2 years old

Then 3 months later (April 2012) we went to the neurologist at UVA (the other appointment we were referred to from the ear infection visit). We waited forever to be called back only to be told that the neurologist we were suppose to see was out sick that day so the other neurologists were covering his appointments that day (on top of their already scheduled appointments). I was frustrated and already felt like the appointment would be a waste. We went into the appointment with Dr. Goodkin to find out that the same resident student from the eye appointment was helping Goodkin out that day. She was able to fill Dr. Goodkin on everything to do with Mackenzie. Goodkin spent a lot of time talking with us and looking at Mackenzie. He said he wanted Mack to have another MRI so he set one up for the following week. I ended up coming out of the appointment feeling much better than I did going into it! I finally felt like we were getting some answers. It was stressful and scary but also comforting knowing we were possibly one step closer to explaining what was going on.

The following Monday morning (on what was suppose to be a lazy pajama day for me and Mack) I received a call from Dr. Goodkin. He asked if we could come to his office around noon that day to discuss Mackenzie's MRI. Even though he had scheduled another one to be done, he took the copy that was on her file (the one that the neuro-opthalmologist had gotten months prior) and had it reread. He told us to not worry but that he would like to discuss what the radiologist at UVA saw. BJ came home from work, and we drove the hour+ drive to UVA. We sat in Dr. Goodkin's office (during what was suppose to be his lunch break) and he showed me a screenshot from Mack's brain MRI. I immediately knew it was Joubert Syndrome (which he questioned how I knew that). During all my time of researching Ocular Motor Apraxia, I came across another blog of another parent whose child had OMA but it was a symptom of Joubert Syndrome. I also saw that Joubert Syndrome has what they call "the molar tooth sign" (click here if you want more info on what it means to have the 'molar tooth sign'). Basically, Mackenzie has underdevelopment along her cerebellum. My emotions the next several weeks were mixed. Dr. Goodkin told us to take time to digest the information and reminded us that this information wouldn't change what we were currently doing and that it will never define who Mackenzie is. A week prior to our appointment with Dr. Goodkin was when Mack took her first steps (at 25 months old) so he reminded us that she is making progress in her own time. But even though I had wanted answers, I now had to face those answers. Joubert Syndome encompasses so much. There is so much uncertainty about the future. There are health complications that occur with it. It is genetic so there is a high chance of having another child with it. Just so much to take in (and still so much to take in each day for us).

But I can't help but sit back and be amazed at God's hand with this. Mack had an ear infection and I couldn't get an appointment with her primary doctor. I had several choices of what other doctor to see in the practice and I chose the doctor who was the father of a girl I coached a few years back in volleyball. And it was because of this pediatrician's curiosity during the sick visit that prompted him to schedule an appointment with a neuro-opthalmologist and a neurologist. The opthalmologist took a copy of Mack's MRI and months later we went to see a neurologist- a neurologist that we weren't even suppose to see. But because of our scheduled neurologist being out sick, we saw Dr. Goodkin. And because of his curiosity, he had the MRI from almost a year ago reread and found the signs for Joubert Syndrome.

And the amazement continues. Dr. Goodkin referred us to a developmental pediatrician at UVA (who Mack still sees yearly) and he gave us information to the Joubert Syndrome & Related Disorders Foundation and to the University of Washington. Over the next few days after the initial appointment with Dr. Goodkin, I joined a Joubert Syndrome FaceBook group. I started reading post after post. Little did I know that our life would really be totally different than I would have ever imagined (that group quickly became our second family). I read a few posts about families going to the National Institute of Health for a research study. I found the contact information for this study and emailed the head nurse (this was on a Friday). She told me that the research study was closed. They had several families lined up until July to come each week but it would be ending in July. She told me to give her a little more information about Mackenzie and she would present it to the lead doctor when she came back in on Monday. So I did. I sent a few videos and information of Mackenzie not feeling too hopeful since the study was closed. Monday morning the nurse contacted me and said Dr. Gunay (the lead doctor) was interested in having our family come the last week of the study in July. Once again I was amazed at how everything was working out. I have typed up quite a bit so far so I will put a link to the post I did soon after our visit to the NIH in case you're interested to read.
Our visit to the National Institute of Health

Mackenzie with her JS buddies and the head doctor/nurse of the NIH study

And it was because of connecting with a mom of a child with JS while we were at the NIH that I was introduced to the Joubert Syndrome medical conferences that happen every 2 years. So in 2013, we attended our first JS conference in Minneapolis, MN. Again, here is the link for that post if you want to hear more about it.
Joubert Syndrome 2013 conference
It was a very overwhelming experience (as pretty much every part of our journey with Mackenzie has been). But so very worth going. So worth going that we had to go to the 2015 conference in Chicago. Due to the craziness of life, I don't have a post on that one. However, there are 2 people who blogged about it and well worth the time to check out. Scott (who is an adult with Joubert Syndrome) and Anna who has 3 adorable children (2 with JS). Both of them do an incredible job blogging their journeys.

Scott's blog- The Rare Writer
Anna's blog- The Unexpected Journey - Unconditional Love

The National Institute of Health has done a lot for Joubert Syndrome along with University of Washington. Doctors from both attend every JS conference. They give as much information as they can to all of the parents who have children with JS. They spend a lot of time researching all that they can on Joubert Syndrome. They are incredible people. It's because of the University of Washington that we know the specific gene that caused Mackenzie's Joubert Syndrome (CC2D2A). We are so thankful for all of the work that both the NIH and UW does for Joubert Syndrome.

I spent a lot of time (much more than I thought I would) on the first 2 years of Mackenzie's life. When it comes to appointments, the next few years following the Joubert Syndrome diagnosis weren't as hectic and stressful. We're now in a good routine. Every year Mackenzie has an ultrasound done on her kidneys, liver, and spleen along with bloodwork to check those levels. So far she hasn't had any health concerns. She has eye appointments yearly and so far her vision is good. She still has her head thrusts but they're not as often or as obvious as they use to be (definitely more obvious when she's tired or focusing on an object). She sees the developmental pediatrician yearly. At her most recent appointment (in August) he commented on how well she is doing/progressing.

Pictures below from our most recent trip to UVA- ultrasound, bloodword, and check up with developmental pediatrician:

I'm not sure how many people made it to the end of this post. It was a lot longer than I thought it would be. It wasn't until I sat down and started typing that I realized how much we've gone through in just 6 years. But I'm glad that I have typed it all out (maybe Mack will eventually want to read it when she's older:)). It's quite therapeutic when I take the time to blog.

I will end by posting a picture of what's on the wall in our living room. This isn't the journey I thought we would be going through as a family, but I can't help but read through this entire post and see that God is using Mack's journey in incredible ways.

Friday, April 29, 2016

Our decision to homeschool (plus our decision to end therapies)

The picture above is from this past August. It was the day of Mackenzie's last Speech Therapy session (a week prior to this she had her last Physical Therapy session). 

Mackenzie started the whole therapy process around 15 months old. She was evaluated in our local Early Intervention program and at 18 months old she began Physical Therapy along with seeing a Vision Specialist. Shortly after, she began Occupational Therapy which was followed by Speech Therapy all by the time she was 21 months old. We had each therapist/specialist come into our home anywhere from once a week to 3 times a week. Mack aged out of Early Intervention when she turned 3 and we decided to keep her in the private church preschool (with a local college student accompanying her as an aide) instead of transitioning her into the special ed classroom in our local county's public school. We continued doing Physical Therapy and Speech Therapy (but doing it as outpatient) so we spent from age 3 till almost 5 1/2 years old driving too and from therapies and preschool (plus all of the other activities- dance, swim, horseback riding, etc). Then at the beginning of last summer (2015), right after Mackenzie graduated preschool, Mackenzie's speech therapist told us that she would be retiring. And that's when we decided to maybe just call it quits for therapies in general. We were exhausted mentally and physically. We loved the care the therapists gave Mackenzie and the support they gave me and BJ, but I was ready to just give Mackenzie (and myself) a much needed break. 

Now to backtrack a little to bring in the school aspect.....we did have Mackenzie evaluated by our local public school when she was about to turn 4 years old. At this time I was still very unsure about what the future held after preschool (which Mackenzie only attended 2 days a week from 9-12). And despite a lot of encouragement to homeschool from my mom and sister, I still didn't want to take that leap (my brother currently teaches and my sister taught until she became a mom and now homeschools. I, on the other hand, always said I would never be a teacher- that was their calling, not mine. Well, I've learned to never say never!). We weren't necessarily pleased with what our public school was going to be able to offer so I finally gave in to what I knew God was telling me to do and said that I'll start taking that leap. 

May 2015 rolled around and Mackenzie graduated from the preschool she had attended since she was almost 3 years old. 

And that's when I think reality set in- I was really going to have to start this homeschool journey soon. I spoke with 2 other moms from Mack's preschool class who were going to homeschool and they mentioned that they were going to join a Classical Conversations group (which I was already familiar with). I had already decided I wasn't going to join any homeschool community this first year but, yet again, I felt the need to look into this more. So the short version is that I did research it and we joined a local CC group (which ended up being a very good decision!). 

Mack's first day of CC- August 2015
As I've stated before in a previous post, each week at CC the kids get up to do a presentation. Mackenzie needed me by her side the first several weeks but then started doing the presentations on her own. 

Mackenzie really enjoyed the science and art aspect of CC. Below is a picture of her dissecting a crawfish (I love that she had so many fun experiences at only 5/6 years old!) 

I'm not going to lie, this past year has held its share of struggles. I overwhelmed myself with thinking I needed to research every aspect of homeschool to find what out what will work best for Mackenzie. I started comparing her to what I thought a child her age should know. Then it finally hit me (after hearing nonstop from many close friends and family) that the reason for homeschooling is because we can work at our own pace. We can focus on certain areas necessary then totally switch gears when needed and focus on other areas. We can do what is best for Mackenzie. 

Just like we did when we felt led to end therapies. We knew it was the best choice at that time for Mackenzie. Will we start therapies again in the future? Possibly? If we feel it is the best choice to do so, then we definitely will. But right now I know we are doing what we feel is best for our precious child. And what is best for our child isn't what's going to be in the best interest for another child. And I'm so thankful I finally have realized (now let's just hope I continue with this mindset!:)) that we need to focus on just Mackenzie and who she is. She is the most unique child I know. She doesn't fit in with any particular group. And I have grown to really love that. Mackenzie and I are embracing the challenges that we face and are learning to have fun with it. 

So what has the outcome been with ending therapies and starting this homechooling journey? I have seen Mack grow in incredible ways since last August. I have seen her confidence grow- she is little miss social, and she has shown me that we will accomplish all that is ahead of us just by being patient. Just in the past month I have had numerous people comment on Mackenzie's physical abilities- she's all over the place! Homeschooling has allowed her the opportunity to not have to sit still. She's able to continue to work her muscles and strengthen her body. She has been able to focus on the extra activities without letting therapies get in the way. She has improved so much in dance class. She started piano lessons in February and has floored us with how well she's catching on. And she's been able to have so much fun time with friends. I know I need to not dwell much on past decisions, but I do regret that times that I canceled a playdate because Mackenzie had to fit in a therapy session. Just yesterday I had 2 friends over and there was a total of 8 children in our home. I watched Mackenzie play with her friends and enjoyed watching her interact so well with her peers. 

Mackenzie's been able to just be a kid. Therapies are beneficial. School is beneficial. But Mackenzie needed to experience the laid back life and since 18 months old she had been in therapies sometimes up to 3 times a week. We wouldn't be where we are right now had it not been for the therapies. And again, we may decide to start them back up in the future. But I could tell that Mackenzie was ready for a break. And I needed a step back from being so busy (don't get me wrong- we are still VERY busy! but just a different kind of busy- a little more relaxed kind of busy).  

Below is a picture/status that I posted on my FB a few weeks ago.  

"We survived our first year of homeschooling! We had our final program today for our Classical Conversation homeschool group and I was so proud to watch Mack get in front with her friends and recite the work they've learned. I started this journey very unsure if we could do this. And have had some struggles along the way. But God surrounded us with a supportive and encouraging CC group and reconnected me with longtime friends who are also homeschooling making this journey so much more doable. So thankful and excited to continue this journey with Mack."

And I am so thankful that I am excited about what's to come. I don't know if we will always be a homeschool family, but I know that this is the journey God wants us to be on right now. 

So to end- thank you to those of you who have given our family so much support especially over this past year. I have shared so many struggles (and tears) with close friends and family. I'm thankful to each one of you for your endless encouragement, love, and prayers. It means a lot to us. I'm incredibly thankful to be able to parent a child as special and unique as Mackenzie. 

Sunday, April 3, 2016

A day at the park with Mackenzie!

Mackenzie and I ventured out to the park last week........

She had so much fun doing different activities on her own. She told me I had to video her so then I could send it right to Daddy. :)

She started out riding her scooter.

Then she headed to the playground where she wanted to climb up 'the ladder'.

Then she wanted to jump off the stairs (something that she's very excited that she can do- jump off of anything and everything and land on her feet).

Then over to the jungle gym bar area. She assured me she would be careful climbing (and I love how she talked herself through it!).

I did have to stop recording to give a little extra help (despite Mack being determined to do it on her own). I did catch a picture of her on the top. 

And then once she went down and hung on the bars. 

Then she decided she wanted to go running in the field (and chase butterflies:)).

And off to the swings afterward. This is one of her favorite activities to do at the park especially since she started being able to swing fully on her own.

Lastly, she wanted another go around on her scooter.

I have to admit, watching Mack do all of the above made me a tad emotional. I looked back at videos I took of last summer at the same park and it made me realize how far she's come. I have a feeling that we will be spending lots of time this spring/summer at the playground!

Wednesday, October 28, 2015

It's been too long!

It's been 8 months since my last update! So much has happened with Mackenzie since the last post. My plan is to break up my posts into a couple months at a time because if I did one post for the last 8 months, it would be super long! Hopefully I'll get around to doing a post every week to get caught up. Not sure who follows my blog much anymore since I have lacked at keeping up with it but I have decided I need to keep up with it regardless for my and Mackenzie's benefit. I never did a baby book for Mackenzie (I started one but then didn't like how Mackenzie didn't follow the 'order' of events/milestones so I ditched it!) so I plan to print off my posts from this blog and put it in a notebook for Mackenzie to have one day.

So here's a quick update for now. I promise to go into more detail soon!

Mackenzie's life consists of NO MORE therapies (I'll expand more on that later....), swim lessons a few times a month, occasional horseback riding, church Awanas, many playdates, and our newest adventure- homeschooling! We joined a homeschool community, Classical Conversations, which meets weekly. Homeschooling has been fun and challenging all in one. I'm not sure if this will be something we do until she graduates or if we will eventually go the school route, but I know that right now, it has been the best choice for our family.

Every week the kids have to get up individually and give a couple minute speech. Mackenzie was hesitant the first few weeks and needed me by her side pretty much giving her the words to say, but the past 2 weeks she has gone up on her own to give her speech.

I've had some proud moments of watching Mackenzie do things that typically would make a parent upset, but I ended up having to snap a picture before correcting her.:)

Mackenzie will get her step stool to help herself to anything in the kitchen. I had to tell her that she needs to ask before getting anything (especially the candy!) but I did smile the first time I watched her grab the stool to get into the candy dish on the top of the cabinet.

And then a few days later she asked me if she could get a snack. I turned around to find her sitting on the counter. I had to tell her that she must remain on the stool next time and not climb onto the counter.:) 

She's been a huge help when it comes to getting bugs!

Last month she ran in her 2nd annual kids run (the 1/4 mile portion). She says she's going to run a ''long race" like Mommy does when she gets older. I look forward to the day when we run our first 5k together!

We've had a decent amount of rain the past month so Mack's enjoyed jumping in puddles whenever she gets the chance!

She also amazes us with her fashion sense. :)

And her overall cuteness! :)

Mackenzie was very excited to learn how to swing by herself. She's been trying hard all summer long and accomplished this in the past month. Now all she wants to do when we're outside is swing nonstop. I love it!

BJ and I continue to be proud parents of Mackenzie. We have our struggles (like all parents do), and we know that we will continue to have struggles the older Mackenzie becomes (especially since she's starting to question the JS aspect of her life). We sometimes get caught up in the frustrations we all 3 encounter when it comes to the "JS side" of things and often forget to just enjoy watching our daughter grow. But when it comes to the end of the day, we truly are thankful for the life God has given us. Mackenzie continues to teach us more than I could ever imagine.

So there's the quick update of our recent happenings. Stay tuned for posts on her 5th birthday, graduating preschool, Disney vacation, JS conference, and our decision to homeschool and to end therapies!