Letter From The States

We had the following letter today from my friend’s pastor, Steve. I have never met Steve. I have never spoken to him. He lives in California with his wife and grown up children. My friend Chloe is working with the church there, doing wonderful things.

Steve heard about us having little Asa, who has Down’s syndrome. His son, Mark, also has Down’s syndrome. He felt compelled to write to us, to encourage us and remind us of our important role in raising both our children. I have read this letter several times, and it is incredibly moving each time. Steve is so open and honest, and it felt like my heart was being pierced the first few times I read it, through blurred and tear stung eyes. I think this may be the turning point in me fully coming to terms with Asa having DS. It’s as though Steve has affirmed that any negative feelings I may have once had were valid at the time but don’t matter now – that in those first few weeks, that was probably the worst I felt about my baby. How things have changed! He has affirmed that it’s ok to be upset and confused about how our new life many look…

So Steve, a new friend across many miles, I publically thank you and pray that this letter may inspire or encourage others out there too. Even just one person, regardless of whether they have a child with DS or just a friend reading our updates.

***

Lizz & Jon,

Chloe just told me that you have had a baby with Down’s Syndrome several weeks ago. The subject came up because my son Mark was just in here making us laugh. Mark is 29 years old and also has Down’s. I asked her if I could write to you and tell you what our life has been like with our son. We went to the hospital not knowing anything could even possibly be wrong. Yet when I looked in my new son’s face I knew the truth. I was very upset but mostly just confused and did not know what to feel. We thought we had failed somehow or been forgotten by God. I was very numb and when people called to congratulate me I didn’t know what to think.

My pastor was out of town when Mark was born yet when he heard about our situation he called me on the phone. He said that God must have thought very highly of my wife and I to have given us such a gift as Mark. This has proven to be the most true statement we have ever heard in our life. The genetic specialist said, this baby will just require more love, and he will return more love to you than you will be able to give. A parent of a Down’s child came to the hospital and said, this right now is the worst you will ever feel about your baby having Down’s. These statements also have proven to be true.

 Lizz and Jon, yesterday was my birthday and so many people told me that I have been a blessing to them; Chloe made my cry with the things she said to me. The reason I tell you these things is that who I am and what I do, is only because I have Mark in my life.  I am a better man, I have love for others, my other children are great people, I have a soft heart, even my fathering of my church people is because of him. I can cry in front of people because of my son and his unconditional love in my life. Hold on to each other and love this child more. Learn from your baby and let God have His way in you through this time. When you hurt, love more and you will one day testify as my wife and I have that we shudder to think who we would be today if it wasn’t for Mark in our lives. When I pray I say thank you for such a gift as this boy. Lizz and Jon, God must have thought very highly of you to have given you such a gift. Thank Him and cherish and love your child and more love will fall back upon you than you can possibly imagine.

Love,

Pastor Steve Orsillo

 

A Poem To Encourage You

God knows what I need and proceeds to encourage me when it’s needed. I’m thankful for Him and His promises to get me through each day. The days when all is well. The days when, quite frankly, life is difficult… But God is always good. This poem was posted in a group I’m part of on Facebook and I wanted to share with you…

 

God did not promise sun without rain,
Light without darkness or joy without pain;
He only promised us STRENGTH for the DAY
When the darkness comes and we lose our way,
For only through sorrow do we grow more aware
that God is our refuge in times of despair. . .
For when we are happy and life’s bright and fair,
We often forget to kneel down in prayer,
But God seems much closer and needed much more
When trouble and sorrow stand outside our door
For then we seek shelter in his wondrous love
And ask him to send us help from above. . .
And this is the reason we know it is true
That bright shining hours and dark, sad ones, too,
Are part of the plan God made each one,
And all we can pray is “Thy will be done.”

~ Helen Steiner Rice

Asa’s First Orthoptics (Eye) Appointment

This morning, Asa had his first orthoptics (eye doctor) appointment at UHW. It was horrible. My best friend, Amy, came with me for support as Jon was unable to. I felt sick the whole time. Asa was referred simply because he has DS. Some children with DS have problems with their eyes / vision, around 40% I think.

The appointment itself was stressful, both for Asa and I (and undoubtedly for Amy as she had to deal with me!). He had to have three lots of eye drops – amazingly he slept through the first two lots, each were ten minutes apart. After the final set we were called in to see the doctor.

Asa had a light shone in to his eyes, but as the doctor was unable to get a clear view, the nurse had to swaddle him, hold him down, give local anaesthetic eye drops before each eye was kept open with a little metal clamp. Oh, how my precious little fella howled. And oh, how my heart broke. The doctor assured me it wasn’t painful as the drops numbed his eyes; he said it would be mildly uncomfortable and that he was probably crying at being held tightly by the nurse. Even so, it was very traumatic and I couldn’t help my tears flow down my puffy cheeks as I looked away from my distressed boy to avert my eyes from those harsh little eye clamps.

The doctor was checking for cataracts and nerve damage. He was given the all clear for visual problems at this point in time, but will be monitored again in January, and regularly throughout his childhood.

Right now, I am so thankful to God that all is well and that Asa’s eyes are currently healthy. God is good! Join us in praying that his eyes remain healthy and that his vision will be complete. I’ll post a list sometime of all the areas in which you can pray for Asa and our family, should anyone wish to do so. Thanks to all of who you prayed for today’s appointment. -x-

BIG NEWS

ASA IS HOME!

ASA IS HOME!!

ASA IS HOME!!!

Did you get that?! One more time, ASA IS HOME!!!!!! Our little boy came home yesterday after four very long, exhausting weeks (and one day)!

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Asa finally gets to wear his ‘coming home from hospital’ outfit!

To make it even more of a special day, yesterday was Jon’s parents’ wedding anniversary. And it wasn’t just any anniversary, but Margaret and Ray’s GOLDEN wedding anniversary! We were a bit naughty as we kept it a surprise! We invited both sets of parents round for a cup of tea and cake after we ‘visited’ Asa. The discharge from the neonatal unit took much longer than expected as there was a long checklist to go through, plus we had to feed him (and occupy a toddler, yikes!). I texted both sets of parents to say we’d be 20 minutes coming home. In they walked to discover their little grandson was waiting to give them a cuddle! SURPRISE!

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Left: My mum, Anne, made this cake for Margaret and Ray’s Golden Wedding Anniversary, for our little informal gathering. (With extra special secret guest!).
Right: My mum’s first cuddle of Asa, aged 4 weeks and 1 day old!

***

This morning, we took Asa to church without anyone other than our parents knowing Asa was home! No-one really noticed at first, except those sat in the ‘Oasis’ area where we were sat. There were a few whispers, people pointing and trying to crane necks and see what was going on, and Mark Lonney informed Matt Lewis, who was speaking, that baby Asa was in the building! We did inadvertently cause some commotion in Matt’s sermon (sorry Matt!). I must admit, I have been dreaming of this day for ages, finally getting to show off our whole family, and we did it. After church we could barely move for people wanting to see him and talk to us.

We are incredibly blessed to be part of Bethesda – it’s such a supportive, loving, compassionate, prayerful church. I’m in tears as I write this. We have seen and experienced God through these many, many faces, these friends, this family of ours. It feels like home.

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Friday afternoon I had a phone call from the unit to say that Asa might be discharged the following day and would I like to come and spend the night at the hospital ‘rooming in’ to get used to looking after Asa. It was a long and difficult night as Jon couldn’t stay with me, and Asa had to be woken and fed every 3 hours through the night, taking sometimes an hour (or more!) to feed…plus his noisy breathing (stridor) made it difficult to sleep. A lot of the night was spent in tears, but we knew we were close to having him home!

P1090073Our first night at home altogether as a family. Precious times!