Friday, September 15, 2017

Special Needs Spotlight || Harry

Our little family consists of myself (Sarah), my husband Carl, our nearly three year old Audrey and our Harry, who is one today! We live in Robertson, Australia, a small country village which we absolutely love. We love the village but most importantly we love the people who live here, we feel so blessed to be a part of this little community. My husband is just finishing his second apprenticeship in the electrical industry and I'm a primary school teacher. It is such a privilege to be able to share our story in this spotlight. 


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Miggy: Welcome Sarah! Thank you so much for sharing your story and your sweet family with us today. Can you take me back to the day you found Harry would have Down syndrome? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?


Sarah: The first time we heard something was not right was the day after our 19 week scan. We had been for our scan and apart from a few small things that, looking back on now were actually significant, thought that it had all gone well. That was until the following day we had a call from my obstetrician. I remember that moment vividly. I had been hanging out some washing and came inside to find a missed call from our obstetrician. I immediately called her back and she told me that our scan had shown that our baby had heart and brain abnormalities and was missing it's left hand. That was the moment our world came crumbling down. She wanted to book us into see a specialist and have another more detailed scan the following day.

That was definitely the hardest day of my life and the many friends and family that came and gave us support on that day and the days that followed, cared for us in a way I will never forget. The scan the following day confirmed that our baby was missing it's left hand and from what the specialists could see it looked like our baby had a hole in its heart which was common in children with Down syndrome. But relief did come that day when we were told our babies brain was OK.

The weeks that followed involved more tests and scans and a rollercoaster of emotions of which I had never experienced. We were so relieved to be told that our baby didn't have a hole in his heart (which unfortunately after he was born they found otherwise). This gave us such hope that maybe our little one didn't have Down syndrome. So after doing the NIPT I felt like our world came crashing down all over again, being told that the results were positive for Down syndrome.

Those weeks were hard, so very hard. Looking back I feel like there was a time when I was there, but I wasn't really. Kind of like when your ears are blocked. I was there, I was present but everything was muffled. I didn't feel much other than numbness.

The thought of our child missing his hand was hard enough, but finding out that he also had Down syndrome, that was almost to much to bear.

I will be forever grateful to my Lord Jesus for sustaining me and helping me find joy where I didn't think it was possible.

Compare those feelings with how I feel now. What a stark contrast only a few months can make. As soon as I held Harry in my arms my worries started to dissolve and they have only continued to do so since.

Miggy: How do Harry's needs affect your day-to-day life?

Sarah: Harry has Down Syndrome and is missing his left hand. Neither of these things are related which is why it was hard to accept at first. Harry is much like any other baby. In fact, I would say he's probably easier than most babies. He has such an easy going personality, is always happy and content. Harry having Down syndrome does mean that he is a little slower in reaching his milestones and we do have quite a few therapy appointments to help him reach these milestones.


Miggy: There has been a lot of talk in the media lately about the "eradication" of Down syndrome in certain countries--particularly Iceland. What do you want the world to know about having a son with Down syndrome.

Sarah: That you love your child because they are yours. The love you have for your child isn't based on their intellect, their looks, what they can give you. You love them because they are yours. None of us are perfect. We can't know what the future will hold for our Harry but we can't know that for any of our children. There is a beauty in Down syndrome that is unexplainable. If people could only see the joy and beauty that is awaiting them, then I know the abortion rates would be very different.
Miggy: What are the biggest worries you face for your child? On the flip side, what are your hopes and dreams for him/her?

Sarah: That's a hard question. Knowing what I know now my worries don't play much of a part in our lives, they way I thought they would. I guess in terms of Harry's health and him having Down syndrome there are more things he is at a higher risk of, the biggest one being leukemia. So whenever Harry gets sick I worry more and wonder if it will be more than just a simple cold or whatever it may be.

Hopes, there are so many. In a lot of ways my hopes for our Harry boy aren't very different from that of ours for our daughter. But I think that in a world where actions speak louder than words. Where these actions are shouting that my sons life has no value, that his life is not worth living, my hope is that he will, even in a small way change the way people think. That people will see just how beautiful life can be living with Down syndrome. That people with Down syndrome have worth, that they are capable in so many ways and that their capacity to love is often far greater than those of us without Down syndrome.

Miggy: What is the biggest lesson you’ve learned since becoming Harry's mom?

Sarah: That there is so much beauty and so much joy. I would never have chosen this journey but I can honestly say now that I wouldn't change it for the world. Harry is just pure joy. The delight that he is to our family and friends is immeasurable. I love him with a love I've never known. A love that is fierce and protective.

During my pregnancy I read a lot of blogs and a few books about families who had children with Down syndrome. They all said the same thing, if I knew what I did now I wouldn't have reason to be sad. I hung onto that and wanted it to be true for us to. Harry has been the greatest blessing to our little family and gives me reason everyday to be thankful. We truly are the lucky few.


Miggy: If you could say something to the mom who just starting on this journey of Down syndrome, what would you say? What would you say to yourself if you could go back in time?

Sarah: There are are blessings and beauty in life's challenges.

I thank the heavens above each day that my plans fell through and my dreams were changed for the better. This journey will change you. But it will change you for the better. You will experience love like never before. When you have to fight for your child, when there is a time when you don't know if your baby will live, when everything seems scary. Once you hold that child in your arms, that is a joy that can't be beaten. Every child is a gift, but our special ones they are such a precious gift.

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Sarah, that was wonderful. I was especially struck with your last paragraph when you said you will experience a love like you haven't before "when you have to fight for your child, when there is a time when you don't know if your baby will live, when everything seems scary..." I never thought of it that way but yes, I remember all of those feelings you described. And like you, when you hold that child in your arms you realize a love that completely melts away those fears, and a love that emboldens and strengthens you as you realize that you would and will do anything for this child. Of course that is motherhood, but to face actual threats and fears (not to mention social stigma and prejudice) you experience the power of love in a new way. Thank you so much for sharing your sweet son with us and like so many Down syndrome moms, for shouting his worth and proclaiming yourselves as part of "the lucky few." XO

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend!
XO, 
Miggy

3 comments:

  1. Anonymous4:48 PM

    Happy birthday Harry! You are the custest!
    Thank you, Sarah and Miggy.

    Liseli

    ReplyDelete
  2. Everyone needs a Harry in their life!

    ReplyDelete
  3. Anonymous8:34 AM

    Hear, hear!

    Our son with Down syndrome is now 8 months old and I can say that I wholeheartedly agree and echo EVERYTHING Sarah says. So true.

    Thank you for sharing about your journey with your precious Harry. He is adorable!

    -Roxana

    ReplyDelete