A “Sense of Loss”- GOALS REDEFINED? – PART 2
So, on that faithful day in May 2010, at around 12.30pm, the lovely Occupational Therapist (OT) came into my daughter’s room in the hospital and said:
OT: “Mrs. Adeloye, with this assessment, I’m afraid your daughter (then 18 months old) would no longer be able to feed through the mouth. We need to insert an NG tube through the nose for feeding, in order to keep her chest free from aspiration (sucking food into her airway)”
I asked: How long before you take it off?
OT: it may be 6 months or more!
(I thought no way! How…? She loves to suck on fruits and sweets…!!!)
Then at about 6.30pm the same day, the Lead Consultant (LC) in charge of my daughter’s case came in and said:
LC: “Mrs. Adeloye, I’m sorry, I do not have good news”!
(Even the dour look on her face wasn’t enough to prepare me for what she was about to say!)
LC: We have assessed the MRI, the EEG and all other accompanying reports regarding your baby, unfortunately the different parts of her brain are now damaged (paraphrased).
“We could continue to investigate to know exactly what went wrong and when, but this would only be for information purposes”. At this point we need to plan to take you through ‘rehabilitation’ and teach you how to manage her care going forward…”
(I will save you the details beyond here).
Well, so, our journey began.
At this point, I guess you will pardon me if I didn’t remember my goals, my year 2010 short/medium/long term goals, dreams, hopes…and yes…my 5years, 10 years plan etc! Many indescribable emotions and thoughts took over at this stage and beyond but that will be story for another day!
I accepted Jesus as my Lord and personal saviour in 1992, and I have been walking with Him for 18 years by this time. As I said in my first blog (check it out if you have missed this http://oakonsult.com/first-blog-ever/); I had already established certain points and I could humbly say I KNOW HIM, WHOM I BELIEVE. Fortified with this understanding, I was determined to:
- Start with the Lord all over again! (I wanted to trace and track…did I miss Him anywhere along the line? How did I get here? This should not happen to me as a child of God…etc)
- Study about this new field of disability
- Find out how best to support my daughter
These 3 things on my list were all that came to my mind in 2010. I had absolutely no idea how to navigate the new terrain we suddenly found ourselves in, nor indeed the solution to any of the different fall outs as we got on the journey.
Now 10 years on, I can look back and say clearly that the hand of God have brought me and my family thus far in a way I never thought or imagined before. I have a totally new understanding of God and learning more and more about His ways. In addition, some of the verses I used to quote from the bible in the past have now become so real to me in a way that I could not have known if I had not come through the path He has placed me on. One of such is Matthew 6:25- 34; permit me to quote just Vs 30-34 in the Message translation:
30-33 “If God gives such attention to the appearance of wildflowers—most of which are never even seen—don’t you think he’ll attend to you, take pride in you, do his best for you? What I’m trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God’s giving. People who don’t know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in GOD-REALITY, GOD-INITIATIVE, GOD-PROVISIONS. Don’t worry about missing out. You’ll find all your everyday human concerns will be met. 34 “Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes” (Matthew 6:30-34 MSG- emphasis mine)
In my journey; and guided by this scripture, I now understand that what we should seek as Christians is not just to have goals, but to seek and plan with what is on the Father’s heart- “God-reality”, “God- initiative” and “God-provisions”.
This is particularly so for parents/carers of those with special needs. The reality of our day to day lives is such that we have absolutely no influence/control over situations. For example, I have resumed at work in the morning and ended up with the same work clothes in Paediatrics Intensive Care Unit by the evening of the same day, and we did not come out of the hospital till several days afterwards on many occasions (the last of such incidence in 2019, it was 45 days long). Caring for someone with special needs comes with roller coaster type of emotions, it is demanding, could be filled with anxious moments as you deal with matters of life and death, and many variables on which we have no control. I have had to learn to hold on tightly to such a verse as I’ve mentioned at such difficult times. Such words of the scripture have been a succour and have given the kind of peace that is ‘unreasonable’ even in the face of death.
As carers therefore, in praying “your will be done in my life, as it is done in heaven”; we are guided step by step into what is our particular “God-reality”, “God- initiative”, “God-provisions” per time which in turn shapes our goals, dreams, ambition and purpose for life.
In my next blog, I will list some specifics and practicalities relating to goal settings for us as parents/carers. I will also discuss what could help us in this area as we dare to dream and redefine the word ‘success’ in our own terrain. ?
Blessings to you!
Do feel free to share and leave comments ?