I remember the day Colin and I picked Lawi up from the airport as if it would have been yesterday. They arrived on their own without any other family, and both of them looked completely different than we expected. In his first blog I wrote that I believe that Lawi is going to leave us full of life.
Now that I got to know Lawi, I can say for sure that he is full of life. He is the most unique and talented nine year old I’ve ever met. His hand-drawn pictures cover our fridge.
Before the meeting with Dr Katz two lovely women came to us who did art….
…..and music therapy. Lawi could try out all kinds of musical instruments, it was a lovely time together.
Afterwards he said that this experience changed his mood from exhausted to very happy.
Suddenly Dr Katz came in and said “I think we need to talk.”
Lawi was not allowed to come with us. Dr Katz said it’s better if he doesn’t hear what he is going to say. The doctor said what we basically already knew one month ago. They did the MRI to be very sure that there is really nothing they can do for Lawi. And they were right. Lawi’s heart doesn’t have a problem with its structure but with its muscle and that can only be fixed by heart transplantation, which can not be done in Israel for him. It means that Lawi would have to move to a European country. This heart condition is not common at all.
However Dr Katz was so kind and wonderful, saying that Lawi is “lucky”. The other two patients he had with this illness died aged just three and six months. I know that Lawi’s life is a miracle. Dr Katz said that only God knows how long Lawi is going to live. And he is right. And I’m crying while I’m writing this because I know that all of this doesn’t matter, because in the end we are all going to die by some means or another. What matters is that we get to know Jesus and experience His love, and through that, love others.
So I’m begging God that our sweet Lawi would get to know Jesus so that he can have eternal life and a his heart will be renewed fully.
Lawi, dapper as always in his patterned vest,
set off to the hospital in hopes of hearing about his MRI results. When we arrived, we were informed that unfortunately the test results were not yet interpreted. Lawi and his father, though disappointed, graciously accepted this information. When I heard the news, my heart was at first saddened but then I thought of how God’s timing is always perfect…even if we do not understand the rationale.
Lawi, whose creativity is a reflection of the Creator Himself, made the most out of this long hospital day by learning Hebrew, drawing beautiful art,
creating a wonderful green boat,
playing hide and seek with his friend Rovar,
and exploring the hospital.
Please continue to pray for Lawi and his family as they wait for the results to be interpreted.
God is looking after him...
Last night, Lawi’s dad asked which friends were going to be going with Lawi to the hospital. I’m thinking the title of the day as a whole should be “the day of the Fathers”, as Lawi went with his father accompanied by me and my father! My parents are visiting and so they have just met lovely Lawi this week for the first time. So, together we began the day. Lawi was quite excited and had chosen a great pair of sunglasses to accessorise his already very stylish outfit.
Lawi was scheduled for a heart and a brain MRI. The brain MRI additionally was requested as some months previously he and his family had been in a fairly major car accident on their way to the doctor in Kurdistan. Since then, Lawi has experienced headaches and nausea, and so the doctors had looked kindly on Lawi’s situation and agreed that an MRI for the brain would be a good idea for him, if it was possible to get this booked in the reasonably near future, although the cardiac MRI was much more of a priority.
Already there had been a bit of a mix up with the appointment. We were expecting to have the cardiac MRI last week, and at the last minute, we found out that it was actually the brain MRI. So this was reorganised, so that Lawi could have both the brain and the cardiac MRI under the same anaesthesia today. The admission seemed to go quite smoothly for Lawi, until one of the technicians came to say that this today was just an MRI for the heart. He explained there was no referral for the brain, and no letter from any doctor, so it would not be possible to do this today. I spoke with many other staff members and doctors, all of who confirmed that unfortunately it was not possible to do both MRIs today, and further to there being no referral, they also were unable to organise the two to be done together. I prayed for favour and waited for what would happen next and felt quite peaceful.
The next person who came to talk to us was the radiographer. I explained again about Lawi’s history and his condition. God opened the door and the radiographer agreed, amongst many many details, that Lawi would be having an MRI for his brain and his heart today. I felt quite triumphant about the outcome here and joyful as I confirmed to Lawi’s dad, it’s 2 MRIs, that God had provided, where the situation was told to me to be impossible…. Nothing is impossible for God…
So as Lawi spent many hours inside the MRI, we had an enjoyable time chatting with his father and drinking coffee. He is a really kind hearted man, and it was nice to spend time all together.
Sweet Lawi was really sleepy even after he had woken up from the sedation, and after we got home this afternoon, I think he’s already gone straight back to sleep. Please pray for this very very lovely family, and particularly that God will continue to pour out his favour over his life.
In their matching outfits, Lawy and his dad looked ready for a fashion show when they appeared outside the house this morning. I really love seeing them together. They have such a close bond and special love for each other, that reminds me of God’s love for us and our identity as his sons and daughters.
Throughout the day – in the car ride, in the waiting, in the meeting with Dr. Uri, Lawi’s laughter and infectious smile was so beautiful to see.
At one point in the waiting area, Frank and Lawy started taking pictures on Frank’s phone. A few minutes later we were almost in tears of laughter. He has so much life in his mischievous smile and brings so much joy wherever he goes.
After the appointment, while Julio collected the car, Lawi and his dad had a lot of fun in the hospital’s music suite. Lawi particularly loved the electric drum kit and was soon filling the room with rhythm. His dad didn’t want to miss out and made sure he had a go too. This time together was so special and looking back, I can see God’s presence and his joy in those moments.
“We lift up our eyes, we lift up our eyes, You’re the giver of life.”
The words of this song spring to mind when I pray for Lawi. It’s a reminder that when we pray, we pray to the author and sustainer of life – the only one who can give it, and the only one we can look to. It’s also a reminder to turn our eyes to him, shifting our focus to God our life giver.
Please pray for the joy of the Lord to be Lawy’s strength. Pray that his dad would know God’s peace and hope.
By Margaret Estes
The day took an unexpected turn for Lawi but not before we enjoyed some relaxed fun together. While sharing a pita dipped in yogurt, we assembled some toys, took photos of ourselves with funny filters and practiced naming various foods in English. Lawi was quite proficient at counting in English. Lawi’s shy smile is enough to melt a hard heart. His calm and peaceful disposition belied the unfortunate news from the doctors earlier this week.
On this day, however, the doctors became more convinced throughout the day that Lawi would be able to return to the Jaffa house. He had changed out of his hospital clothes, and the doctor had begun the discharge papers. But Lawi began to suffer a massive headache some time after we left his side. The doctors were not willing to discharge him with this latest development. His father was dejected and discouraged, but nothing could be done. As we left the hospital, the plan for Lawi was to receive eye drops and visit the ophthalmologist in the evening for tests to look for possible causes of his headache.
I am reminded of the truths that:
“What is impossible with man is possible with God”! Luke 18:27
“Oh, Lord GOD! You have made the heavens and earth by your great power and outstretched arm. Nothing is too difficult for you!” Jeremiah 32:17
“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever.” Ephesians 3:20–21
Our merciful and mighty God is not hindered by the limitations of mankind despite all our medical knowledge and advancements. The bigger the mountain, the greater His glory when He moves it. And so we pray and hope in our God to move mountains for Lawi.
“May Thy will be done on earth as it is in heaven”
Our incredibly strong Lawi was able to leave the ICU and was moved to the general pediatric ward. Coworkers Colin and Amber and I were very happy to hear about this and set out to find Lawi’s new room. Lawi’s Dad seemed very pleased to see us when we arrived. Strong and beautiful Lawi lay weakly in his bed. He seemed very tired but still he proudly presented to us his three band-aids. Seeing Lawi in this big bed, he seemed so small and fragile but our fighter is not discouraged. He showed us his still stunning smile. I couldn’t help but be in awe of our Creator at how He made this boy; how He created his beautiful smile, his strong mind during this tiring time, his incredible artistic talent, and his open character. Yet my mind isn’t able to form as many loving thoughts as God’s mind does. His thoughts toward Lawi are inexhaustibly good, proud and loving. His love for Lawi is so deep and so pure and He is with Lawi through all of these difficult moments. How precious also are Your thoughts to me, O God! How great is the sum of them! – Psalm 139,17
God will never stop thinking about Lawi because he is His child. I pray that Lawi will be able to feel this love and see how much and well God thinks of him. Please Pray for wisdom for Lawi’s doctors and that Lawi and his daddy will get to know their wonderful Father in heaven.
When we entered the 4th floor this morning Lawi was standing outside his room in the hall as if he would have waited for us. It took a few seconds until I noticed him and shouted “Oh, good morning Lawi!” I was so happy to see him. He smiled at us with his cute and shy smile.
One of the nurses told me that Lawi’s catheterization will definitely be today, they just don’t know the exact time yet. I realized that the nine year old was a little bored and so I was more than glad to find these two puzzles that were just perfect for his age.
Spending time with Lawi really is a blessing as he is such a lovely, gentle and calm boy. He has just a very sweet and humble spirit.
Finally at 10:20 they took him into the cath. His dad remained completely calm. And as we were also waiting with Samir’s mum for Samir’s surgery to end we were a lovely little group of waiting people.
The cath didn’t take too long. When I came into Lawi’s room afterwards he was already half awake again. He was stable and seemed to be fine. But after we had given him a tiny bit of water he had to throw up. Nevertheless he remained calm. Everything about him is just so lovely. The way he pulls a face, the way he talks with his sweet little voice, the way he nods to say he is alright, the way he loves his dad…
The result of his cath is quite challenging: the function of the ventricles of his heart is very bad and the treatment options are limited. The doctor said they’ll have a conference to discuss what’s best for Lawi. Please pray for wisdom and that God’s will will be done in Lawi’s life!
“For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.” Jeremiah 29:11
Details revealed by first exam in Israel
Lawi’s first visit to the Sheba Medical Center was today. In the midst of an area bustling with children running around the play center, Lawi patiently waited on a colorful seat with his father by his side. Lawi meticulously created art. He once aligned stickers gently in a perfect line, and counted each and every one of them. During his waiting period, he colored a picture within the lines and carefully matched the colors to their descriptions.
As his art is detailed, so is his diagnosis. In addition to his heart condition, Lawi has pulmonary hypertension, or high blood pressure in his lungs. He also has fluid in his abdominal cavity and lung cavities. These are contributing factors to his frequent respiratory infections, struggles with tolerating prolonged activity, and frequent vomiting. The cardiologist is suggesting a valve replacement surgery. A chest x-ray was performed today. Hopefully after the cardiologist interprets the results, more details regarding the plan of care will be disclosed as we learn more information.
Please pray for Lawi and his father as they wait for more results. Please pray for wisdom and respect in planning his care.
Two hours after the flight from Sulaymaniyah landed in Tel Aviv, Lawi and his father finally received their visa to enter into Israel. The Shevet Achim team was praying that their visas would be approved, especially because today was the last day before their visa entry allowance would expire. This is not his first attempt to enter into Israel as his previous visa expired, so we are very thankful that he was able to arrive safely.
The fathers at Shevet Achim warmly welcomed him to the Shevet Achim family. Arkan’s father kindly oriented him prior to his arrival, and Israa’s father eagerly greeted Lawi as he arrived at the Jaffa Center. We could see the smiling and waving father of Israa 600 feet away as we approached the house.
Lawi is a lovely nine year old boy. He has his first cardiac assessment in a few days on Sunday. Our hope is that Lawi will not only have a physical transformation of his heart, but also a holistic transformation. We believe that he will leave Shevet Achim full of life.
Written by: Jana and Colin