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 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: 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 a boy: Climbing a mountain...daily

First...THANK YOU. Thank you all for your prayers. We can feel them. Thank you for your encouragement. We need them! God knew community was so valuable and we are beyond grateful for the one surrounding us now. YOU are a part of that.

So a little update...

OSH IS EXCITED! Wow! He is so excited about his upcoming appointment at the hospital daddy use to work in--so much so that he has already begun to pack his "-uggage" with stuffies and Little People toys. He decided he wants to bring along some clothes and is also wondering if he can take a picture with the big machine...all by himself. He is excited he gets a date with "just dad" and is even more excited to pick any food he wants after his big appointment. This is truly a blessing! It brings me peace to see him excited to go to the hospital for his upcoming "picture appointment." 

God has heard our prayers (but let us keep praying!).

 

From the last blog to this, I spent much time online learning & re-learning about fine motor function and activities that could help OSH strengthen his grasp, specifically pencil grip for preschoolers. (Fine motor skills...something OSH has struggled with since infancy). I found a FANTASTIC blog written by an anonymous occupational therapist describing many activities such as using smaller broken crayons because they "force" a child to use a tighter grip (too bad I just threw out all of our broken crayons) and "pencil grips." Little did I know....WOW...there are VERY strong opinions about pencil grips. I will spare you the details, but we decided to take a "$10 risk" to purchase a pack of three pencil grips. When they arrived yesterday, I was eager to try them out...and OSH DID GREAT! All this to say...neurological deficits (or not), I feel empowered with some new tools that I can use at home to help OSH grow in his "scholastic" and "artistic" and everyday abilities. 

In life, we often take the simple things for granted like holding a pen, holding a toothbrush, scooping yogurt onto a spoon, opening a door handle or pulling up our pants. To my son, these are mountains he has to climb multiple times every. single. day. And I am SO proud of him for doing it! Without realizing, he is persevering through difficult tasks moment by moment with a smile and good attitude (most of the time). He is too young to feel "sorry" for himself and has yet to make up excuses as to why he can't do something. I PRAY he never does. I pray that every day, he keeps climbing up his mountains, conquering them one after the next. I BELIEVE IN HIM! He is my inspiration.

Growing in Faith: Identity Confusion

Has your head ever spun around as you scrolled through several media sites or read varied articles stating multiple opinions about our nation or world or even how YOU should live your life? Everyone has a different idea about what is right, about what is true. Everyone has something to say about EVERYTHING. It is confusing. What should I believe? What do I believe?

What do you choose to believe? By what filter or lens do you view your identity? 

In Matthew 16, Peter was faced with this same challenge. The question of the time: "Who do people say that the Son of Man is?" (v. 13). Opinions varied, thinking Jesus might be John the Baptist or Elijah or Jeremiah or one of the other prophets. 

But in a direct address, Jesus comes to Peter and asks, "who do you say that I am?" (v.15). 

In that moment, Peter had to decided. Peter had to declare. Peter had to not only form and settle on his belief...but say it out loud! (Would he be ridiculed, outcast for stating his opinion? Would he be harmed or shunned for his belief?) Scripture doesn't afford us the inner thoughts of Peter in this moment, but what we do see is Peter's words:

"You are the Messiah, the Son of the living God." (v16)

This bold proclamation was followed then by Jesus revealing to Peter who Peter was, what Peter was made to do...Jesus revealed Peter's identity and purpose.  Peter was then blessed; Peter would become the cornerstone of the church. Jesus revealed Peter's spiritual gift. BUT--- this only happened when Peter turned from the naysayers of the world, turned off the media (so to speak) and turned to God...only when Peter stared Truth in the face and responded in faith. 

Are you seeking to find your identity based on the beliefs of this world? No news poll, news article or social media post will ever reveal your true identity. We MUST go straight to the source, form and settle on our own beliefs (based on God's Word) and say them out loud. I have found when I say something out loud, it somehow becomes real, tangible--no longer a thought swirling around in my mind. 

Will you be bold enough to ask Jesus about your identity...the life He has planned out for you...JUST YOU!? Are you able to behold and believe the Prince of Life when He calls you to perform tasks outside of your comfort zone? When will you proclaim, out loud, to others that Jesus is the Messiah, the Son of the living God? This, dear friends, is our mission in life...to glorify God and seek Him above all else. When we do, our identity will be found and our opinions will be made based solely on the words of Scripture. Be bold, dear friends. Step into the greatness God has created for you.