Our boy turns 5 today. He seems to have spent half his life fighting for it, but the greatest miracle of Jesse’s life so far is that he still has it.
I was lying in bed last night remembering what is probably still one of my hardest memories – a doctor holding my hand and telling me they have given Jesse every possible thing they can give him and he is still falling. That he didn’t think Jesse would make it through the night. For me, the pivotal moment was not the moment Jesse’s numbers changed and he fought his way back to life, but when Tim and I went for a walk and talked and prayed decided that we still believed what God had said – he would bring our son back from the land of his enemy. That was the moment I was so grateful for my faith in Jesus. Because it was him as God who has been man that I was listening to. And he wasn’t “religion”. He was a powerful and present Friend – an arm around our shoulders and a certain hope spoken into our hearts. I guess in that respect, my worst moment has also become my best – through it I know that I know that I know that Jesus Christ is who he said he is.
We are just so thankful for Jesse’s life. Yesterday, after Tim brought he and Indie inside after playing tee-ball with them out the front, Jesse said plaintitively “Dad, I want to play a real game now.” And Tim said “We were just playing a “real” game Jesse. What do you mean?””No, not baseball. I want to play a real game. Like ‘Mum and Dads'”.
I howled with laughter. This guy is so himself. At his little ‘slip’n’slide’ birthday party on the weekend, I was a little bit sad to see him watching the other boys rough and tumble rather than being there in the middle of them. They are brown and muscly, and Jess is very white (thanks to a haemoglobin of 72 … instead of 130) and holds back. But more and more I think it’s the surprisingly loving and off-centre
way of looking at things he has that will make Jesse the man I will most admire. I’m not saying it to placate myself. I just think life gives us opportunities, and how we live with them determines our character. So far, through absolutely no control of mine or Tim’s, I think Jesse is humbling me and making himself a giant with his tolerance, his understanding and his tenderness.
This is what his life entails at age 5: 5 needles a day because his pancreas still does not work. One of the needles is a very painful one for a blood clot. He has a catheter in the bottom of his neck. He takes without a murmur 22 pills a day. He must drink 2.2L of fluids and cannot be in the sun very much because his meds are so strong they kill his body’s ability to endure the sun’s effects. He expels so much urine I get up and change him twice a night. He currently has an immune system that as the doctor said yesterday, is “so low it barely registers”. Because of the c.difficile, his body was so dehydrated that it turns out his veins collapsed. So his creatinine is still high and may take a month to recover. He goes to the hospital for bloodwork twice a week; is hooked up to an IV every 2 weeks and still has at least 2 surgeries to go – one on Friday to remove the stent in his kidney.
But this is how he looks: chirpy. Peppy. Little jumps of enthusiasm for any little thing he is involved in. His face this morning when he saw the balloons I had draped around his and Indie’s room was lit up with joy. He is having a tutor for an hour a day right now to get ready for school in September. He missed so much that we are just helping him be able to jump right in. He loves it. We went over and over that you could actually tell Mum and Dad something you’d like for your birthday. All he could come up with was “Well, I want a cake.”
I guess thinking of all these snippets of him make me so grateful for the child he is. His sisters fill my heart with joy. But Jesse has come into his own through harder means, and today, I just feel so proud of him. He has been God’s teaching vessel for me – a hands-on demonstration of His grace and absolute faithfulness.