There is a time for everything,
and a season for every activity under the heavens…
Ecclesiastes 3:1 (NIV)
Well, Ecclesiastes 3:1 was fresh on my mind when I first started writing this blog (3/15/24), as daffodils were perking up in front of my home, as I was looking out my office window, through the barren trees, soon to be blooming with flowers and buds for leaves to burst forth. For several months fall and winter both provide me a lovely clear view to a very large and beautiful river in front of my home. I’m not the biggest fan of winter, cold, snow, wind and frost, ice and scrapers, etc, but I do appreciate the view of the river as an upside to all that other stuff. I do so look forward, though, to the blooming, blossoming beauty of spring, and all that it will provide for colors, warmth, and a prelude to the upcoming summer season. Seasons are distinct in ‘central’ Pennsylvania, and I’ve grown quite fond of the four distinct seasons, though as aforementioned, winter is not my favorite. Hehe. However, this blog is not truly being written about the times of year.
For some of us, changing of seasons comes with great discomfort and leaves us unsettled by the unknown. For others, the anticipation of something new ahead is titillating and received with eager attention. With seasons comes change, and many are the seasons and changes in the life of a person. I’ve personally come into a ‘change of season’ in life, with my dear son entering on the stage of life. Usually change is not something that has brought me discomfort or made me unsettled. I have often, in life, embraced the many changes that have come and seasons I have been blessed and privileged to live. However, I am now in a ‘change of season’ that has been uncomfortable and unsettling, and I would like to share a little about that here.
My dear son, Jedidiah, cannot talk. Jedidiah cannot walk. Jedidiah cannot eat (at least whole foods or anything that needs to be chewed). He was, at 32 months, gaining the stability to use his neck and head in a mildly controlled manner. He had/has limited movement of his extremities, and limited ability to communicate his needs, wants, likes, hopes, etc. This is a reality that is so very difficult to articulate and capture in words sufficiently and succinctly. As a man who has prayed for wife and children for over 30 years now, never could I have imagined this season of life. While that may have been true even if my child was born without all the medical and special needs that Jedidiah has, it feels especially heavy and hard. However, there is hope and happiness in the mix.
Jedidiah loves to shout with Daddy, as we try to see who can hold out our shout the longest and loudest. I started this with him because he was born prematurely and diagnosed with poor lungs (along with many other challenging diagnoses). We laugh and smile together LOTS every day. He loves to cuddle and snuggle up on Daddy’s shoulder, and in Mamma’s or Daddy’s arms. Jedidiah is quite expressive at times, and those moments are so very important to hold on to and treasure! Jedidiah is my dear treasure of a son, and I will fight for him until my very last breath.
As an advocate for children, a missionary for children of Latin America, and one who loves to encourage, empower, and inspire children to deeper faith in Christ, I find myself in tears often over nightmares I can’t seem to shake, when I see my son vomit, convulse, or struggle, wishing I could talk with, walk with, and play with my son differently. We’ve recently relocated to the US, so as to have access to a better and more thorough medical system. I cannot even tell you how many tears and loud conversations I have had, since arriving back to the US, because of trying to get through red tape and see my son get the appropriate medical attention that he deserves. Things now are moving forward a little more smoothly, but I am on edge for whatever other hiccups, hold-ups, and challenges we may encounter in this journey.
While seasons usually change, and many fear change, I find myself fearing that this season of change we are in may not change. My wife has been strong, and she has had to carry Jedidiah way more than most mothers must. She does good to feed him, change him, love on him, and entertain him while daddy works. I often try to hold our son while she eats first, so she can have a hot meal. We take turns caring for him on days where we’ve had to endure restless or sleepless nights. These are not complaints, but reality of what we are living. Physical therapy, occupational therapy, pediatrician, neurologist, audiologist, ENT doctor, etc. all require time, travel, and patience. Medical assistance has still not been approved and medical bills are accumulating. Fortunately, the hospital has provided a person experienced in pursuing medical assistance to help us to try getting medical assistance for Jedidiah. We need to wait a couple of months still, before knowing if his medical assistance is granted or not…
Now we can fast-forward to today…5/31/2024. In the past two and half months, we have received more clarifying (and heart-wrenching) diagnoses for Jedidiah (Spastic Quadriplegic Cerebral Palsy and high risk for seizures, epilepsy, and SDS… sudden death syndrome), and we have continued to need to give special attention and care to him. Fortunately, medical assistance/insurance has been granted, and we have been able to see many different specialists and medical staff to keep Jedidiah progressing forward. His insurance will be providing (hopefully soon) his own advanced stroller, stand up equipment, and a bathing seat/bed. He also is now on anti-seizure medicine, though he still (less frequently) suffers from uncontrolled convulsions. He still enjoys laughing, smiling, looking at books, receiving his foods in liquid form, and spending some play time in his floor-gym area. My wife continues to be strong, and carrying our son an awful lot of time, as he still is not crawling, sitting, nor walking. His speech is not yet developed, and we continue to struggle with sleep issues, tears, and frustrations of the reality in which we live. My honest and writing of this piece feels very incoherent and maybe even unnecessary, but I want to advocate for my son, cheer on others who are fighting for their children with special needs, and cry out to God for mercy and grace in the midst of the challenges (joy, beauty, and brokenness all wrapped in one) that these circumstances cause.
Please pray for us. Please pray for me. Please pray for Jedidiah. I feel helpless to alleviate his struggles, and I would take his pain and infirmity if God would allow me to take them for him! Life looks a lot different than anticipated, but God is still good and on His throne in all seasons and changes. Please consider offering your prayers and encouragement for me and my wife, as we so often feel quite alone in this journey! Thank you and God bless you!
Why am I writing all this? Because I know that every child deserves an advocate, and, as we at Abogar International Ministries advocate for so many children of Latin America, I do not want it to be unseen or unknown that we also care for the children and families that are here around us as well. The amount of people we have encountered who also are supporting children of different special needs is staggering, and I know each of them needs encouragement, love, relief, and blessings! To have a listening ear, receive a prepared meal, hear a voice message or text of encouragement, or have people to volunteer to help or be present are some of the many ways these parents and families could be blessed. Abogar’s mission and vision have not changed at all, and we are excited for potential growing connections and opportunities in Mexico and other areas of Latin America, but we must also be aware of our neighbors here nearby, and the many children and families with great need to be loved on and advocated for. While Latin America is the region that we have been called to, what about you? Do you have or know a family near you that has a child with some sort of special needs. Is there a local family you could reach out to, to provide encouragement, support, or blessing? The challenges and struggles they are facing may not all come to light, but I am certain that they would be blessed to receive any kind of support, encouragement, and/or blessing that you might be able to provide!
While I have feared that this ‘season of change’ won’t change, I also am trusting God to provide all that my wife and I need to be the right set of parents, providers, and presence for our dear son, Jedidiah. I am reminded, once again, that my life has a calling of trusting God and obeying Him, no matter what circumstances or seasons I find myself in. No matter what seasons of change we face, or do not face, the reality is that we are always called to live out the love and hope offered by Jesus Christ in every moment. May we be steadfast in doing so, no matter how the seasons change!
