The perfect example is last week, when we spent 5 days in the hospital with Josua. He had influenza virus and needed oxygen,its the 3rd week we are sick and for the longest time I haven’t felt so weak emotionally and physically. I must admit that when Josua is sick, it is very hard and very difficult and exhausting to care for him. He always has a lot of mucus and its hard for him to deal with it.Life with Josua can be hard sometimes but also beautifull.
” Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12
” Rejoice always, pray continually, give thanks in all circumstances;for this is God’s will for you in Christ Jesus. ” 1 Thessalonians 5: 16-18
Joy, patience, prayer, thanksgiving … I thought a lot about these two verses the last few weeks … and what I learnt last year over and over again was that it is better to pray for every little thing than to be overwhelmed with worries.
We are very happy that Joshua has been eating 2 meals a day for 2 weeks now and that he has made progress with the support of his head. He still can`t hold his head up on his own, but he now controls the movements much better, the doctor says that he has made great progress. We consider any progress, no matter how small , a victory. Of coure the sad moments do not disappear completely either. Sometimes I find myself in situations where I automatically think of how life would be if Joshua was healthy. At one year old he should be much more independent than he is now. He would sit, crawl, etc. These thoughts come, but every time they do, God touches me with His love and peace. It is important that we stop seeing what we lost and begin to look forward to what is coming, no matter how it comes.
The biggest change that Joshua did was in our hearts and I noticed that in the moments of weakness, in the moments of doubt, they come more and more rarely now.
Patience, patience, patience … since Joshua was born, we really learnt what patience means. We need patience in all things … with Joshua’s eating, with the progress that comes very slowly, sometimes with the sleepless nights,the diagnoses … nothing is concrete in his case … in all areas we need patience to see how it will evolve.
We have many prayer requests for Joshua and we are grateful for every person who prays with us. Last week an EEG was made, according to the doctor the left side of the brain shows irregular waves , but he can’t say what that means exactly. He does not have any visible seizures ( seizures can be a side effect of microcephaly ) and we pray that this remains the same. The next EEG will be done in 3 Months. An area where God changed me in the past year has been that I am not concerened when I am given such news and he gives me his peace and comfort. I can not change anything anyway but what I can do is pray for him that God preserves him from epilepsy.
If someone has it in their hearts to pray for Joshua, here are a few prayer requests :
– that his head grows
– that he can hold his head, at the moment it still falls backwards
– that his muscles develop
– his brain develops properly so that he can understand and speak
“Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” Mark 11:24
he will never let the righteous be shaken.” Psalm 55:22
” Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress,my God, in whom I trust.” Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night,nor the arrow that flies by day,nor the pestilence that stalks in the darkness,nor the plague that destroys at midday.A thousand may fall at your side,ten thousand at your right hand,but it will not come near you.” Psalm 91:1-7
(feat. Chris Quilala)
The One who made the blind to see
Is moving here in front of me, moving here in front of me
The One who made the deaf to hear
Is silencing my every fear, silencing my every fear
I believe in You, I believe in You
You’re the God of miracles
I believe in You, I believe in You
You’re the God of miracles
The One who does impossible is
Reaching out to make me whole
Reaching out to make me whole
The One who put death in its place
His life is flowing through my veins
His life is flowing through my veins
Romans 8:35-39 New International Version (NIV)
35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?
36 As it is written:
“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”
37 No, in all these things we are more than conquerors through him who loved us.
38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers,
39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
In the past few weeks, God reminded me of an important lesson. Actually, we all know how to live our lives and how we should react in certain situations, but often it is difficult to act properly.
Joshua had a cold for the last five weeks. Sometimes I had the impression that he is getting better and then the whole thing started happening all over again. So in the past weeks there where many moments when I felt frustrated, without strenght and without patience.
From my own experience, I know that in such situations, we have the need to talk to someone, to someone who understands us. We panic, call our friends or family, listen to other opinions, search for information on the Internet … the feeling of fear overwhelms us … until God says STOP! just breathe, give me all your problems and come to rest… Do not worry, I’ve got everything under control! The fear does not come from God and God wants us to go straight to Him with our problems and struggles and not to other people, because no one can give you peace like God.
Three important things that God has put into my heart in the last few weeks:
– we are chosen, God loves us and is mercyful
– We have a purpose, Christ is before us and behind us on our journey no matter what comes ahead
– Nothing separates us from his love and he never lets us down.
It all depends on the decisions we make in life. Do we choose faith or choose to bury ourselves in uncertainty, fear or courage,to be sad or happy and grateful for what we have! Let us not say “I can not” , instead say “I can do everything through Christ who gives me strength”! Let us go directly to God …. and choose to grow , not stay in our daily comfort. Let’s decide to put our problems at his feet and not panic for every little thing.
Life with Joshua is a new beginning for us, a beginning in which God teaches us to grow spiritually every day, with every decision and in every situation.
I pray that God gives us the strength, to fully trust Him in the situations where fear and panic comes.
1 I lift up my eyes to the mountains—where does my help come from?
2 My help comes from the Lord,the Maker of heaven and earth.
3 He will not let your foot slip—he who watches over you will not slumber;
4 indeed, he who watches over Israel will neither slumber nor sleep.
5 The Lord watches over you—the Lord is your shade at your right hand;
6 the sun will not harm you by day,nor the moon by night.
7 The Lord will keep you from all harm—he will watch over your life;
8 the Lord will watch over your coming and going ,both now and forevermore.
Isaiah 55:8-11New International Version (NIV)
8 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.9 “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.10 As the rain and the snow come down from heaven, and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater,11 so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.
How is life with a special needs child ? It’s not easy, but you get used to it and you begin to accept things as they are. You learn to live and enjoy every moment, every cm in the head circumference, you are happy for every little progress he makes, but the biggest joy is when you see his smile and his love for you!
After weeks of crying I noticed how everyone around me continued their normal life but our life took a 180 degrees turn. You realize that all material things have no value at all, they are all in vain. You have a nice house and everything you need … when all you want is health for your child. In time, God heals your heart and changes your perspective.
You start to cling onto His promises and His Word, because God and the love and happiness that Josua has for us are the only things that give us strength to move forward to write the story that He had prepared. God has much greater toughts than ourselves, for our lives.
Our daily life has found its rhythm, Josua’s condition has become the new normal for us. School, kindergarten, physiotherapy, osteopathy, work, appointments to various doctors, we never get bored and are on the run all week.
Josua now has 7.700 g, 74 cm and 41.5 cm head circumference and we are glad that he turns occasionally from belly to his back, which is a breakthrough for him. When we give him a toy in his hand, he is curious and begins to feel it. Now he has a very ugly cough again and is on antibiotics, but with God’s help he will get over it.
Over time, you learn not to put to heart everything the doctors say. At first it was hard , when some doctors had the attitude that everything is lost, when they look at you with pity and can not say anything concrete, they give you the feeling that they have abandoned your baby! It’s hard in these moments to stay positive and keep your eyes fixed on His promises, but with His help it is possible.
Psalm 94:17-19 New King James Version (NKJV)
17 Unless the Lord had been my help,My soul would soon have settled in silence.18 If I say, “My foot slips,”Your mercy, O Lord, will hold me up.19 In the multitude of my anxieties within me,Your comforts delight my soul.
It’s sad when strangers look at Josua and you see in their eyes that they wonder what he has, but do not dare to ask! It’s a process to have the freedom to tell them, That he does not see and all the other things without being discouraged, remaining convinced that this is His plan.
The time comes when You feel powerless and you realise that you can only have peace if you fully trust God. You reach a certain point when you leave aside your fears of the unknown and will start relying on faith. I don’t want the problems in our life take away our passion for Jesus! I want to look at the positive side of things because there are kids with even worse diagnostics than Josua. Ups, downs and fear will come all the time but we trust and lay all our worries in His hand and He will care for all!
We are convinced that Josua’s life will bear fruit and that in time people will learn to look at him through His eyes and not with eyes full of pity. In the meantime we will go forward with God.
Joshua 1:9New International Version (NIV)
9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Matthew 28:5-9New Living Translation (NLT)
5 Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. 6 He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. 7 And now, go quickly and tell his disciples that he has risen from the dead, and he is going ahead of you to Galilee. You will see him there. Remember what I have told you.”8 The women ran quickly from the tomb. They were very frightened but also filled with great joy, and they rushed to give the disciples the angel’s message. 9 And as they went, Jesus met them and greeted them. And they ran to him, grasped his feet, and worshiped him.
I spent so much time thinking whether to write this blog or not.
When I read this passage from the Bible, I realized that God chose these women to go and bring the news to the disciples.God chose them to bring the news and they left with fear, but with joy!
I’m starting this blog with fear, thinking of what some people might have to say, but also with great joy, so others can see how great God is in any situation.
Even if God doesn’t change the circumstances and problems in our lives, He has changed our hearts to these problems.
I’m not saying it’s not hard, it’s often very difficult and we feel that we have no power physically and emotionally. There are moments when you start to doubt,times when you want to cry, but most importantly, there is that time when God brings us encouragement and consolation.
I created this blog because I want to share our life, our story and our journey with Josua.Hopefully God will use his story and ours, to touch lives and encourage others who are going through the same thing.
The weeks were passing by and I started having a strange feeling, like something’s wrong, but with each visit to the doctor everything was ok,.
At twenty weeks things began to change! Looking closer to the brain, the doctor saw that the ventricles are enlarged and that his head was smaller than it should . I felt everything around me collapse … and yet … deep in my heart I knew this moment would come. I realized that by the anxiety that I had, God tried to prepare me for what followed.
After this news, they began a series of tests, ultrasounds, assumptions … But nobody knew and nobody could say exactly what it is or how it will affect Josua.On February 12th 2016, our little miracle was born. 3.320 g; 49 cm and 33 cm head.He had difficulties to adapt, he didn’t like to be touched and has not opened his eyes at all for three weeks. He stayed Five days in the NICU while I was in the room alone, without my baby.My feelings oscillated between joy and sadness.
When we went home from the hospital Josua received the diagnostic microcephaly, muscle weakness, and microophtalmus ,microcorneea. ( behind one eye he has a malformation that goes up into the brain)
After 2 weeks we went to an ophthalmologist where doctors said he will not see at all with one eye and with the other, he will only distinguish light and dark. Because the head is too small, we do not know how it will affect him mentally. Muscle weakness … we do not know yet how it will affect him, but he is 8 months old, and he can’t hold his head up and can’t sit yet . We are doing daily physiotherapy with him and we are noticing a slight improvement but it’s a slow process.
He was tested for CMV, Zika, cystic fibrosis, trisomy 18, 9, and 13. We are thankful that he has none of these,however doctors assume that there is something genetic and we are currently expecting the genetic results.
At the beginning we were afraid, we were panicking, we asked thousands of questions thinking about the future. How will it be? What are we going to do ? I cried for weeks asking God why? Why us? and searched people going through the same thing.
I want to thank everyone who prayed for us. Your prayers and support mean a lot to us! I had a time when I could not pray, but other people and our amazing church carried us in their prayers. Thank you enormously for that!
At the moment it is going very well. Josua is a very gentle, happy and loving child! He already differentiates our voices and enjoys when he hears us. He is happiest when Mommy, Daddy or his big brothers play and snuggle with him!
We are convinced that God has a purpose for everything. In eight months Josua brought more people on their knees than others in a life. We love him so much!
We believe in an almighty God who performs miracles and we are praying for a miracle in Josua’s life to make him healthy.
Will God heal him? We do not know, but we know that His plan is perfect as it is, whatever He will decide.
In any situation, any problem, we can cry about it or glorify Him. We want to glorify Him.
We didn’t choose this to be our story, but God chose us. Besides all the worries and hardships, we are honoured to be Josua’s parents! His presence fills our home with love beyond measure.