Baby Jireh – open letter to our family and friends
To our beloved family and friends,
We have some news to share with you.
If this is the first time you are receiving this news please don’t be offended.
We can’t physically get to everyone and we’d prefer to get to you in some form rather than for you to hear our news from someone else.
Lorrain and I are truly blessed by the arrival of Jireh (pron. Jai-ruh) Shaun Ali at 4.04am on 18th October (2012).
Jireh’s brothers and sisters – Eleni, Joseppe, Pia, Eli, Mina and Jemima are equally blessed and excited by his arrival. Excited to the point of obsessive doting and endeavouring to be in exactly the same space that Jireh inhabits at any one time.
This is not the news that you may be receiving for the first time.
The news is this…
At conception, and consequently at birth, Jireh had (and has) a condition known as Trisomy 21. Trisomy 21 is also known as Down Syndrome.
We learnt of this diagnosis approximately 34 hours after Jireh’s birth.
This news initially left us confused, fearful and shell-shocked.
Emotions that you may be feeling right now.
I recently read a beautiful letter by a mum of a child with Trisomy 21 who described the initial shock as being like planning a detailed trip to Italy, getting on the plane, landing, disembarking and suddenly realising that she’d landed in Holland…
We were suddenly in Holland, but expecting Italy.
Once the shock had passed. We very quickly realised and resolved a number of things.
1. Jireh is a beautiful gift to our family. He is delightful. We adore him.
2. He is healthy. Like any child there are health risks. Statistics tell us that people with Trisomy 21 are more susceptible and even likely to experience heart, eye and various physical and intellectual development issues. However, all tests and reports to date indicate that his health is “remarkably good”.
3. We despise labels. We have never been a fan. I don’t even like having a job title of CEO.
So, what does this mean for us?
1. We love all our children equally and deeply. But their vulnerability brings out the best, and the worst, in us. We already love Jireh with a “fierce” love. The thought of anyone hurting him or limiting him even unintentionally or out of ignorance draws out the strongest feelings from the depths of our souls.
2. We believe and know that Jireh will live and lead a rich, abundant and beautiful life.
3. He is NOT a “Down syndrome baby”. He will not grow to be a “Down syndrome child” and then a “Down syndrome adult”. He is, first and foremost, a child of God. He is our child. We are charged with the responsibility of loving him and guiding him to live a life of great purpose. As so, yes, he is a child with Down syndrome – but we do not believe and will not allow that label to define or limit his life and all that he can be.
And what does that mean for you?
1. BE EXCITED FOR US. We have a new baby boy! Please DO NOT apologise, say “sorry” or “that’s tragic”. There is nothing to be sorry for, we are celebrating the arrival of a beautiful child into our lives – celebrate with us.
2. Pray with and for us. There are many unknowns and we don’t know the future, but we know who holds it. God has already done a miracle in Jireh’s life and we remain confident and unshaken in a God whose plans are to prosper and not to harm him. We don’t know what that looks like. It may not look like what our limited human understanding says it should look like, but we trust that Jireh has a ‘hope and a future’.
3. Be patient and “normal” with us. Just love and support us as you would “normally”. As we have said, we don’t hold to labels and refuse to allow Jireh’s life to be limited or impacted negatively by them. And understand that “support” may not mean calling us or visiting us all the time either. Just treat us the way you would at any other significant time in our lives – with love and understanding.
Life is an often unexpected and beautiful journey.
We are not worried or fearful.
We take each day as it comes, trusting in our God and expecting an exciting and wonder-filled future.
Much love and thanks,
Aleem and Lorrain.