Growing a boy: When Seizure Increase

Our Oliver experienced another short seizure today. My heart is breaking, my head is spinning...how can I support this little guy? I am thankful this one was under 1 minute and was pretty mild. Perhaps it is the heat? Maybe it is the fact that he fights naptime and has eliminated his nap altogether. I remember with my other two, I looked forward to "no more naps" because that meant longer outings, different play dates, and in many ways an untendered schedule. No naps and/or a lack of sleep for Oliver can result in seizures.

Life is complex with a child who has physical or mental effects from a medical diagnosis. For example, did you know that heat can be a trigger for seizures? I just learned this today. It is recommended your child take showers, not baths in case they have a seizure--yet you should have a shower seat and handlebar in case they have a seizure while in the shower? Everything-- EVERYTHING seems so much more complex. As his mother, I think and overthink his safety--because I have to.

In many ways, the older he gets the more challenging it is to parent him. Growth causes seizures. Brain development causes seizures. Weight gain can cause seizures. Skipping a meal can cause seizures. Most result in more blood draws to determine the level of medication in the bloodstream. It is heartbreaking to see my kid experience seizures. It is heartbreaking that he has to get "pokeys" (aka blood draws and shots) often. This is his normal. This is my normal. It is tough.

Along with his other medical diagnosis and sensory struggles, every moment of his waking day is "all hands on deck." It is explaining, reexplaining and reexplaining again what we are doing or where we are going. It is creatively talking him "down or out" of a raging fit because something did not go as expected, or was too loud, or something brushed again him in a "wrong" way.

Yet, in all of this, God is good. He provides resources, answers, support and wisdom. In the daily ins and outs it feels lonely and exhausting yet, I know Jesus walks with me. Thank you for reading my words, understanding a bit of our world and for giving me (and Oliver!) grace as we navigate the beautifully complex human God has created him to be.

My love- B

Growing in Life: Remember, it’s only for a season.

 

Remember, it’s only for a season.

 

 

Just getting by in life… and then you have a choice? You can do anything? What freedom we have yet we are afraid to embrace!!

 

We have opportunities those before only dreamt about yet we hide.

 

We have a choice to be great. We have a choice to live a life of greatness, according to our purpose and calling. How often we do not fulfill our purpose because of fear.

 

What is there to fear but fear itself?

 

Embrace change. Embrace the life choices you have.

 

Stop just getting by.

 

Open your eyes to the world around you.

 

You live with blinders on. Who placed those blinders on you but you? Who can remove them but you and Grace above?

 

Release yourself from past. Release your expectations of the future.

 

LIVE!

 

Live life by seizing moments and opportunities.

 

Seek what is good. Seek blessings, not hurts and failures. See each step as a step forward. As a learning experience.

 

LOVE!

 

Love where you are at in life, despite how down, at times you might feel. Love because that is what we are called to do. Let hate be captured. Hate for self, hate for others. What joy comes from holding yourself random over hate?

 

LAUGH!

 

Enjoy time. Even if it may seem boring…find JOY! Laugh. You will not always get what you want in life, but learn to laugh.

 

Remember, it’s only for a season.

 

May 30, 2007

Growing in Faith: What is your "tree" of "the knowledge of good and evil?"

To my fellow believers.

Ok...2022! Goals! Mine (among many)...read the Bible's Old Testament. Last year, I accomplished reading the New Testament, but the OT---now that is a different story.

Diving into Genesis 1-3 this morning, I was made acutely aware of (shhh...I am going to say it) .... TEMPTATION-- but not in the way I have traditionally thought about it. Stick with me okay...I think this may have an impact on you too!

I only got to Genesis 2:9 before God started speaking volumes to me---hence the reason I am typing now instead of reading.

Scene: God just created land, water, sky, fish, animals and THEN man...Adam. The Bible mentions briefly about the world man was put into but then a verse later, God says:

 "Then, the Lord planted a garden in Eden....there he placed the man he had made."               (Gen. 2:8, NLT).

Did you catch that? God PLANTED a special place JUST for man...and PLACED him there. Now, if that is not the highest honor, the best gift, the most profound thought! Out of ALL that God created, he created yet another special place just for man. This got me thinking. Not my main point here, but more of a side thought---

• Where has God PLACED you/me? What specific "garden" has He created JUST for you? Your family? The location of your home? Your job? Friendships? Are we enjoying it? Embracing it? Appreciating it?

• What a BLESSING we easily ignore...not really seeing our "placements" as truly gifts from the Lord! Talk to God about that a bit. I think He will reveal so pretty amazing insights to you!!

 Okay--that was a different tangent, let me get back to my main point.

After God placed man into the garden in Eden, we are told that in that garden, God also planted two specific trees in the middle of the garden: "...the tree of life and the tree of knowledge of good and evil." (Gen. 2:9, NLT). ANNNNDDDD....this is where the Lord stopped me! Having read this story many times, I know where this is going but I kept reading...

God continues by telling man of his purpose in the garden. The PURPOSE for man being in the garden was "...to tend and watch over it." (Gen. 2:15, NLT). Ok, question time again: What has God called you/me to "tend" and "watch over?" It seems so simply, doesn't it? But, oh how distracted we can get from our God given purposes! (Pray about this one too!)

Then God put a boundary, a rule, a "do not do" command, "You may eat freely the fruit of every tree in the garden --except from the tree of the knowledge of good and evil." (Gen. 2:16-17, NLT).

God put one teeny, tiny boundary on man---the TREE! I wonder the thoughts of man in between the time man was placed in the garden and woman was created (Gen. 2:18-23). Where did man's thoughts turn? To the "off-limits" tree or to purely enjoying what and where man was--BEING PRESENT in the moment of time...enjoying the work and purpose for which he was created? Then I think about us--what do we often think about and focus on. Where would your mind go--onw that you could or could not do? (Remember, sin had not yet been introduced to man--yet--I still wonder what man was thinking. Maybe there wasn't even a thought about the tree he was not to touch--until he was given company (a helper, just like him). Shortly after, God made woman from man (Gen. 2:18-23) and the story gets more interesting. 

Cliff Notes version (so I can get to my point): The serpent comes to tempt man, they accept the temptation and are kicked out of the garden. Done. Boom. The rest of history is based on the events played out in chapter 3 of Genesis. 

My bigger point: WHAT IS YOUR FORBIDDEN TREE? That one "thing" that is centered in the middle of your life that is off limits--that God has told you is not good for you---yet- you still want to test it, look at it, hold it, walk around it, entertain it (even just a "little bit")? Are you not able to fully separating yourself from what God says is not good for you!?  Is it social media? Is it a friendship? Maybe it is shopping/overspending or neglecting Bible/prayer time with your Maker. Perhaps it is over eating or ..... the list could go on.

What ever your "tree" is, recognize it for what it is. It is a GOOD boundary, set by God to protect you and give you life and FREEDOM! We don't often think boundaries or "do not do's" create freedom, but I have personally experienced that boundaries really do allow us to live full, purpose filled lives. It takes restraint and discipline but it is worth it.

So, in this new year I encourage you to ask the Lord what "forbidden trees" He was placed in your life (for YOUR benefit!). And when He shows you, resist them!! Choose different than the first man and women (Adam & Eve). Choose to accept God's boundary AND THEN focus on all that is good and life giving "trees" He has given you rather than those things in which God has said are "not for you." God is a God of Grace and Love. His concern and care for you runs deep. Remember your HOPE in Jesus that you are not resisting the evil on on your own but rather with the fully armor of God and the gift of the Holy Spirit.

Enjoy this first day of the new year. Know that God walks with you though the power of the Holy Spirit and that He desires you to have a rich, meaningful life by embracing all He has created you for! Enjoy Him and those He has placed around you.

Maranatha. 

Growing in health: A wrist device

It all started about six months ago when I got my Fitbit. I realized how restless my sleep was. How inactive my body was. And more importantly, I realized how anxious I was as noted by my high resting heart rate.

In a season of uncertainty, on many levels, I allowed my mental stress to affect my physical health. Within a few weeks, I began to recognize the signs my body was giving off when my heart rate was increasing: Shoulders up to the ears. Heart pounding a little faster. My hands clenching the steering wheel just a little tighter. My voice raising. (Do any of these things sound familiar to you?) None of these things are good or healthy. None of these things do I want my children to learn— My bad habits.

Today driving the kids to school, I was again thankful for the little device around my wrist. At a stoplight, I glanced down and I noticed that my heart rate was way too high given the fact that I was simply just sitting in a car. After taking several deep breathes, releasing my shoulder tension, and losing my grip around the steering wheel, my heart rate dropped by five points! Can you believe it!?

I resist to use the word “mindfulness,” maybe I am just learning to be more aware—but I would recommend that each one of us take a look into our habits and our physical reaction to the world around us. Within minutes, I felt so much more peace and calm. My mind was clear and my words were more succinct. I was able to fully present with my children on the rest of the drive to school. 

In a world where life demands multitasking, our bodies simply cannot catch up! There is no doubt that certain seasons are busier than others. And certain times of the day that are more strenuous than others. Regardless, we are called as believers to take every thought captive to the Lord! As we do this, we can experience what true peace truly feels like!

I write this not as a sales pitch for a fitness device but rather as a reminder to check in with your body. Examine your attitude and your actions and how those might be influencing (either positively or negatively) not only yourself but those around you! I was surprised I have learned so much about myself from a tiny little device wrapped around my wrist.

Growing a boy: Triumph

It has been 24-hours since our sweet youngest experienced his "epic" day in hospital-land, 45 minutes away. He enjoyed the special "just with Dad" time and the one-on-one attention from multiple providers (playing peek-a-boo with them as the providers discussed his progress). The day was filled with shuffling from this appointment to this meeting to that scan. It went seamlessly. Our family continues to be impressed with the level of care, attention to detail, honest discussions, and the integration of services we receive on behalf of our son.

So, here is the news:

• Chest x-ray----- CLEAR
• Echocardiogram ---- CLEAR
• Lung Capacity ---- GROWING
• Surgical site ---- UNCHANGED
• Overall development ---- ON TARGET

The team of providers was BEYOND thrilled with our boy, almost surprised at how well he is doing considering his experiences in that first month of life and the two new diagnoses in February. We are thrilled too.

I thank the Lord for the work HE has done in Oliver. God has been faithful to direct us as parents and we willingly submit and obey-- PT--YES....OT---OK! "Special" Preschool--- SURE! Because of God's wisdom and our many "yeses," our son is thriving. Yet, we do not take this for granted. We know that this sweet boy belongs to the Lord. We pray for and will accept God's will for our son.

We will be reunited with the team of amazing providers again (minus the echocardiogram) in 18-months. Praying for another amazing report.

Thank you for joining us in prayer and rejoicing with us.

Growing a boy: I had a moment of PTSD

Our family is settling in after Oliver's February diagnoses (2021). What felt hopeless and insurmountable for Oliver has now become our everyday---managing medication, incorporating PT & OT into daily routine, researching/education and shifting how we parent to better accommodate how our sweet youngest processes life. It has been an adjustment but an honor to see this little man's life unfold and to rely on God to give us wisdom and direction in the middle of this pandemic. 

Looking back on Oliver's last 4 and a half years of life, it is a privilege to stand where I do. To watch him thrive in preschool--almost mastering skills I thought he would never learn. Peering at his sweet sleeping face, holding his creations from school and reflecting back on his amazing use of language and words. I am in awe.

Despite the growth I have seen, I had a flashback moment today while driving to pick up Oliver's siblings from school. Exhausted from preschool, Oliver quickly fell asleep within 5 minutes of being buckled into his car seat. As we drove the 25-minute drive to his sibling's school, down the leaf covered street, Oliver began to sporadically cough in his sleep--more of a gag. His eyes closed---sleeping, still, not moving.

Instantly, my mind went to worst case scenario. I was reminded of when he stopped breathing after we finally brought him home. I was reminded of the time when Tyler rapidly drove Oliver to the ER, rubbing Oliver's sternum almost the whole way. My mind recalled the pain of trying to feed him while dealing with his reflux coughing fits.

In the pouring rain on a gloomy fall day, with snowing leaves, I had a moment of PTSD.

Every few seconds I looked back---my mind conjured up a thousand questions (& panicked scenarios) while trying to keep in my minivan in the yellow lines on the wet roads:

• Is he breathing? Does he have color? Is his chest rising and falling? Is he moving---at all? Do I need to call 911? Should I wake him up or let him sleep? 

What felt like an hour (seriously) was really only two stop lights. By that time, Oliver cleared his throat, moved his hands and adjusted his head -- almost as if to say, "Nothing to see here. I am fine, just choking a bit on my saliva while I sleep."

I could have had a heart attack; my heartrate was so high.

**SIGH** Relief.

I pulled the van safely into the school parking lot, reversed into a parking spot and about lost it. Grief. Pain. Hardship. All of those "not so fun" emotions from a "not so easy" season of life--I need to let him sleep. I need to recover from my emotions. A kind act from another mother--who brought my other two children to my van while Oliver slept--was just the moment I needed. A moment of grief, a moment of acknowledgement--sitting there for just a moment--before I had to jump back into my role as a "Mother of Three"

I am thankful that mother, unknowingly, gave this moment to me. I am grateful I could recognize but not linger in my grief. In the past, it would have taken a while for me to "snap out of it." The Lord has blessed me with healing, with joy, with peace about all the events we faced as a family upon Oliver's arrival.

I had to laugh a little though--of course ALL of this comes on the eve of his annual surgical follow-up (which includes a chest x-ray, nutritionist, echocardiogram among other tests/procedures). It has been a while since I have had such a blatant reminder of Oliver's tough beginning of life story. 

So, I sit here at my computer--all three children snug in their beds for the night--grateful. Oliver continues to remind me of just how precious this life is. None of us are guaranteed tomorrow. What we do--What we say--How we say it-- it ALL matters. I hope you take this as a reminder too...we simply trust the Lord, submit our ways to Him and He will always show us the way. He will always be our Healer. He will always bring us through our hard things--whether on earth or in Eternity with Him.

Glory be to God Almighty.

Growing in faith: Let this cup pass

Jesus knew He was on His way to death. He cried out to God, "My Father, if it is possible, let this cup pass from me." Then, in recognition of God's Almighty Power, Jesus said, "Yet not as I will, but as you will." (Matt 26:39)

This passage reminded me of OSH's day of birth. On the OR table, having just had my premature, unresponsive son cut out of my belly, God directly spoke to me saying, "I giveth and I taketh away. You have to be okay with that, ok?!" 

It was a command. It was a fact. It was a reminder. It brought me comfort. Knowing only God is in control of life and death--no matter what the medial team did or did not do. No matter if the doctors and nurse did everything perfect or not. God told me that He controlled Oliver's life. 

In my Bible reading today, I was struck by Jesus' words, "Yet not as I will, but as you will." (Matt 26:39). In light of all of the recent testing and testing to come on our youngest, I will commit to praying this prayer..."Your will be done, Father, Your will be done."

As I surrender, pray, and accept, I find myself in a glorious spot. I find myself again recognizing the beautiful gift our youngest son is (all of our children for that matter). I find myself staring at him in awe of all he overcomes everyday to perform daily tasks. I am reminded that he needs a bit more patience and direction and handholding (literally and figuratively) to accomplish simple directions. I realize that perhaps I am not the best person to teach him preschool "academics" but I am his biggest advocate and resource seeker. I see that I cannot compare our family dynamic with other families in similar stages because our family must do life slightly different. 

I will pray that God will train up his mind to overcome challenges, but to pray for healing...why? He is perfect just the way God intended him to be. It was and is God's way that our son came into the world as he did. It is God's way that as parents we are refined by the "unexpected," our responses more quickly turning to God than any thing else. 

When I once had no hope, God is faithful. With a few new discoveries and possible avenues of support, I know that I can forge ahead in confidence and faith. Our "perfect" son, just as God intended him to be. I write this with a smile on my face and a joy in my heart. God is holding me fast, teaching me, and encouraging me to look beyond what is right in front, the temporal. God is so gracious to us by giving us Oliver, his "complexities" and all. Our little boy is a miracle. He is a teacher, one who teaches us daily to turn to the Creator. 

 As you will, Father, as you will.