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
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
I received such a positive wonderful feeling reading what you wrote, Whitney. Your family's journey has been incredible and I have marveled over and over as the three of you have met each challenge. I know that the strength of your great faith has given you the strength you need and I am so happy you have that. I am so proud of you, BJ and Mack. I am so blessed to have you in my life. Every night when I say my prayers I thank Jesus for my family. I love you all so much💞💞💞
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