Our precious boy is now two years old and going strong. Two years older than the few hours of life we were told to expect, two years older and making great progress. His development is slow but he is developing. His head control has improved significantly, he is very close to being able to sit up independently. He can roll on the floor, reach out for objects and show us how to have a party with messy play. He attends groups and classes and is doing particularly well in his Conductive Education class. He laughs lots, loves his siblings and recurved an abundance of love from the many people involved In his life.
He spent his second birthday in hospital which was initially disappointing. But, the staff at our local hospital worked throughout the night putting up balloons using oxygen tubing and surgical tape, they printed photos of JamJam and made hats with his picture on it. They put up banners and birthday signs around his bed space and I walked into the hospital overwhelmed with joy. The love and generosity of the amazing nurses was simply beautiful. In the afternoon a group of staff filled his bay in a long line singing happy birthday bearing gifts and smiles. They even reserved a table in the atrium for us to have pizza, cake and drinks to celebrate. JamJam was on CPAP and needed oxygen support but he still managed to enjoy his special day.
Our frequent hospital visits have remained, he is admitted at least every 3-4 weeks. He has epilepsy which we are battling to get under control but through our faith in God we will combat it. JamJam is a happy, relaxed and contented boy. He loves kisses, cuddles and tickles.
As far as we know his vision remains poor but praise God he has eyes. I continually pray for a miracle; asking God to give him the vision to see my face.
James 1:2-4 The Message (MSG)
Faith Under Pressure
2-4 Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colours. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.
Some may look upon our situation with empathy and pity. Some may see it as a huge burden and challenging situation. Some may say, “I could never cope”. Truth is, sometimes it is that way.
BUT, I can honestly say, that I have found the most immense and fulfilling joy through this life challenge. We have a beautiful son who demands very little from us. He has multiple challenges which require 24 hour care but his character and personality is absolutely beautiful. He smiles often, he babbles and entertains himself daily. He is satisfied with whatever he is given and doesn’t make any selfish demands.
He has taught me to believe and to have faith in God. In fact, I’ve drawn so much closer to God as a result of raising my son. I’ve become far more patient and far more hopeful. Our son has given us many gift; too numerous to mention. We owe him so much.
We have met the most beautiful and loving people as a result of him, amazing nurses, gifted doctors, therapists, paramedics, carers, other Trisomy 13 and Trisomy 18 families, Facebook friends and more. Our home is filled with activity and vibrancy.
We are blessed beyond measure and whilst it really isn’t a bed of roses, we find abundant joy in the journey. My heart swells with joy when I think of the blessings we have because of JamJam. My love and humility for God has magnified, I would not be able to get through a single day without God’s presence in my life. If my husband wasn’t a faithful man we would have crushed under the pressure.
Instead we turn to God for help. We trust Him to take us through no matter what. No matter how difficult it is, we are united in Christ Jesus and that’s what keeps us going each day, that’s why we can find joy in the journey.