Growing a Boy: With Every Season

I honestly thought life would even out after our dear youngest was born, however, with each passing season, it becomes increasingly more...more of everything. The decisions are countless. The stresses too numerous. The weight seems to never lift. I daily pray for wisdom. It is tearing me apart. 

Am I doing enough?

Am I doing too much?

What if I make the wrong decision?

What if.....?

My sleep is interrupted nightly by anxious thoughts. My head reels trying to research more....the need to find the "right" answer, the correct path. I need to do something rather than watch my child flounder.

Yet, I too I am floundering ... in a sea of what-ifs. My sandy ground gives way as I plumet, slowly rolling towards the sea. I have no way to stop. My hands grapple for the nearby branch, yet that too breaks...and with it, patrially my hopes. I stay in the fight (barely most days) carrying the burden well. Even if it looks like I carry it well, my soul is slowly being crushed by its weight. What am I to do? In the solitude of my situation, I see no escape. Yet I want an escape. I know God will always give me a glimmer. Today, my glimmer? I am still trying to find it.

Being a medical mom is isolating. I fear I talk too much about my struggles and push others away yet when I can't/don't, they swallow me. I am stuck in this in between. I want to protect my child, my other two children, my friends, the world from the anxious thoughts I daily hold. It produces nothing but isolation.

With every season, I cling to Jesus. He is the Author of my faith. Without Him, I would be nothing. So, I move forward, in this season today, still seeking and praying for wisdom. In His time and in His way, I know He will provide all that I need. I must simply wait, trust, surrender to the Maker who knows far more than my eyes and heart can see and know. I cling to the cross. 

"Don't worry about anything, but in everything, through prayer and petition, with thanksgiving, present your requests to God." Phil 4:6

Growing a Boy: Help Me Sail

I knew it would be hard. Yet the hard has not been at all what I expected. Days crying, researching, withdrawing from the world, not knowing what to do. Most days my head feels like it is barely bobbing above the water. I gasp for air. One more wave will surely pull me under. This is not the life I imagined having yet here I am. I seek to have a heart of gratitude, to see the good in all that is around me. I also recognize in the blip of life, these moments are small but the decisions I make in these moments will leave lasting evidence and imprints on my child.

I have a disabled son.

He may not seem it to the looking world. I think that is some of the challenge. The somewhat invisible challenges are often harder for onlookers to embrace because they are not seen--they are not tangible. To be honest, it is hard for me sometimes to embrace them too (and I am his mom). 

Entering first grade, I had such hopes that our boy would thrive. He overcame so much in kindergarten that I thought without doubt he would keep propelling forward in the world of academia. A month into first grade--- road block after road block we have hit. I am left with the desperately difficult decisions-- do we keep going? Do we repeat 1st grade? Do we just "get through" this year and then move to a new school next year? On the surface (or even typing them), the decision does not seem that big. Am I overreacting? Am I hype focused on something that doesn't really matter?

But it does matter. I am his mom. I am his first advocate (along with my husband). We lean into our faith...no matter how little our faith might feel in the face of these mountains. In a moment of desperation, I purchased a necklace on Amazon. A necklace, you may be asking, what does that have to do with your struggle? The gold chain, with a circle pendant, holds a mustard seed. A small, almost unnoticeable mustard seed. If you are the believing type, you may recall the parable. A faith of a mustard seed can move mountains. That is the hope I am clinging to. If I can just hold it together, "muster up" a bit of faith, I can sail through the storm--not drown. The Hope that rests in Jesus alone is enough. He is good. In His love, He gave me my medically complex son. Truly a gift. Through my son (and many tears and toil), my faith deepens. I see God answer prayers in subtle ways. I find ways to uphold others in my community who are also struggling. In my suffering, I strive to serve. To remove my eyes from the pit in front of me and look up and look around. What beauty to behold. Just in this past week, I have seen not one but TWO double rainbows--at just the right time. A visible reminder of God's love and promises to me. What joy and hope. In this past week, a dear friends sent me and unexpected "just because" "I'm thinking of you" gift. Wow! God does see and hear the deep longings of my heart. 

I recognize we are all suffering in some way. We are all facing hardships of varying kinds. I am not alone. I try to fix my eyes on the author of my faith, share my struggles with others, see the struggles of others and cling to my mustard seed of faith. God will work out the details. I simply hold my hands open and up. I surrender, Lord. I give you my little faith, my tears, my toil, my deep pain. Prevent me from drowning. Instead help me sail.

Growing a Boy: I "just" want to be his mom.

As you can imagine, this school year started with many complexities. My plate is crowded with obligations and responsibilities. Does my son have a disability? Yes. Does he need different scholastic accommodations than traditional students? Yes. Does he require therapy within and outside of the school day? Yes! Do I have other children, a job, and a household to run? Yes. However, there needs to be a surrender in the middle of the chaos.  As our family falls into somewhat of a rhythm of the school year, I find myself anxious. I am asking myself questions like:

o   Am I pushing too hard for supports/accommodations?

o   Is it worth disrupting my son's school day for therapy? (and all the make-up work!)

o   When are too many resources/therapies just that…too many?

o   Do I let him grow “as is” or intervene?

 

I find that my phone is tethered to my side during the school day, “just in case” the school calls to tell me that my son had a seizure or something even more catastrophic. Is this a healthy way to live? No.

 

What if I am "just" his mom? What if I fully surrendered my son to the Lord? I realize that my thoughts and feelings are based on fear and worry. When I live here, life and joy are taken from me.  How, then, do you reconcile the practical everyday questions with the life of surrender and trust? 

In all honesty, I don't want to mess this up...for my son or for myself. I don't want to be so wrecked that I walk around with a perpetual lump in my throat, a pit in my stomach, and a doom cloud floating over my head. Sadly, this is how the days have felt recently. God, just take my anxious thoughts. Allow me to surrender. Can I "just" be my son's mom? Can I stop being an advocate for him? 

In this, I pray for wisdom. I pray for healing. The trauma of his birth just keeps seeping in. I can't help but remember our son fighting for his little life at just days old...the pumps, the tubes, the medications...the many unknowns. I do not want to live a life dictated by the past. My son is alive. That should be enough, right? But the wounds are deep. Life is fragile. The mind is fickle. Help me, Lord. Take control over my heart, mind, and soul. You be the one that fills me, Lord. You be the one to answer the many questions I have. You grow him because today.... today, I "just" want to be his mom.

 

Growing in Faith: Come and Rest

Have you ever wondered how to experience joy when the world around you feels chaotic? This is a question many of us have asked ourselves. Our questions may seem too big or the unknowns...well, too unknown. But we, as humans, have the capability to navigate, persevere, and conquer the mountains in front of us. 

We get to choose our response:

1) We can be raw, vulnerable, real, authentic, and transparent. Yet, this comes at great risk of shifting our chaotic world onto our friendships --or-- being disliked, ignored, or made fun of.

2) Alternatively, we could give the obligatory, standard response, "Everything is okay." "We are just figuring things out, you know, one day at a time." Yet with this response, we remain unseen and unknown.

Neither response is wrong, but isn't there a better way? 

Yes, there is! The answer is found in Jesus. When we carry the burden alone, we can feel hopeless, without a landing place. Jesus came to carry the burden with us and for us. We can surrender and trust that Jesus is faithful. But are we willing? Are we willing to surrender? Are we willing to learn? Are we willing to rest? Jesus can heal even the deepest wounds. We simply get to come and rest.

"Be still and know that I am God."

Growing in Faith: Widely Complex Emotions {change}

When a season ends, we sit and we reflect. We mourn and we celebrate. We take a deep breath and pause in silence.

What next?

The Band-Aid feels like it is ripped off way too soon, but then you realize that your wounds are healing. They needed air and space so that the skin could be fully renewed.

Seasons in life are like this. What feels like “it is gone too soon” or what feels like “I can’t breathe” when a season changes, we know we are stronger than we were when we first entered the season. Many lessons have been learned. We slowly let our hand off the handrail to realize that we didn’t fall…but in case you were worried, you looked back to see your village standing behind you cheering you on.

You cry. You grieve. Your emotions are widely complex yet you know… 

YOU. ARE. ENOUGH. 

You are seen. You are loved. You, dear friend, have a purpose beyond any purpose you can see for yourself. Just being who you were created to be has left a lasting impression on those around you. You learned to show up—cry with others, pray deeply, listen more closely, and refrain from being the center of every conversation. To be at the table, known by name, is simply enough.

These widely complex emotions are valid. Sit in them. Allow yourself to feel all the feels …then...just then, when you process, cry, and grieve, look up. Know that the Father above looks upon you with deep joy, love, and kindness. You are His. He already knows where the next fork in the road will take you. Trust Him. Trust the road. Have faith that the next season will bring about a great impact on your life. It, too, will change you and heal you in unexpected ways. Lean into it. Change is hard. Change is frustrating and at times anger producing – but don’t sit there. Grieve your loss, come to an acceptance of sorts, and look forward to embrace the beautiful seasons ahead—seasons that have been predestined by the Lord, JUST. FOR. YOU. Yes, just for you.

Those in this season may find their way onto your new path once again, your new road. Welcome them. And at the same time, allow yourself to fully embrace those who walk shoulder to shoulder with you in this new season. Even if the new season is unexpected (or comes far too early), know there is a greater plan. A far greater plan than you may ever know or see. YOU. ARE. SEEN. You are seen so much that, the Creator of all, deeply cares about the widely complex emotions you are feeling. HE. WILL. HEAL. YOU. He will heal you, perhaps not in a physical way, but rather in a deep spiritual way. So let the Band-Aid be removed. Feel all of the feels. Grieve. Accept. Pray. Trust.

GOD. HAS. YOU.

He always has and He always will. Day by day your wounds are healing, your heart is transforming and your new season will change your (body, mind, and spirit) in ways that only the Creator can. Embrace it with deep passion, with deep trust, and great joy. (But it’s okay to take a moment and grieve…allow yourself to sit there for a moment, in silence, washed by the Spirit).

 

Then, move forward in great hope. You have a purpose and a gift the world desperately needs. Share it.

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