Fourteen Years of Special Needs Parenting

Yesterday we celebrated Miss K’s 14th birthday. She looks forward to that day each year with excitement. About six months ago she began saying, “it is almost my birthday.” Her birthday means that I now have 14 years of special needs parenting experience. Next year I get my 15 year award. Oh, it is not like that in parenting is it.

Special needs is a general term that expresses itself in so many ways. Some children can look “normal” but have special needs. Other children the special needs are evident looking at them. I don’t know which is easier. In many ways I am thankful that Down Syndrome has features and that helps in understanding Miss K’s abilities and setting expectations. (I could get into the whole expectations vs. ability but will save that for another day.)

My experience is based on raising Miss K and I will just reflect on some things that I have learned about God. Fourteen years ago as I held a tiny baby with small ears and purple fingers (those are the two things I remember about her when she was born), I didn’t realise all that I would learn.

So with 14 years of experience what I have learned? There is so many things that I have learned — medical terms, therapy options, expectations, and many other things. I will focus on the things that I have learned about God through this experience.

14 Years Special Needs Parenting

What have I learned?

God is sovereign. That was and still is a truth that I cling to, this was not a surprise to God. God knew we were living in Asia, God knew she would need two major surgeries within weeks of birth, God knew. Today that truth still holds, God knows.

God is the provider. Twenty six days in NICU, two major surgeries, and numerous tests and procedures at a cost of less than US$300. A physical therapist who donated her time to evaluate and recommend exercises for the first two years. (I so wish I could go back and find all the doctors, nurses, and therapists.) Moving to a new country and just happening to live in the same village as a speech therapist from the US when we were ready for speech therapy. I need to remember today that God is the provider as we wait for a school placement.

God is faithful. Just as each year has a 12 July so God has been faithful through all these years. Day in and day out He has been faithful to us.

God is the healer. I know that God is the healer. She was in God’s hands the night that we were told to go home and prepare ourselves as she would not make it through the night. As we left the NICU that night, I looked at the doctor and said, “she is in God’s hands.” I went home and went to sleep. The next morning we called the hospital. Three days later she had open heart surgery.

God cares. In big and in little ways through these years I have seen that God cares. He cares about Miss K and He cares about her family.

These are just a few of the things that I have learned about God in new ways these past fourteen years.

Happy birthday Miss K. You are a precious gift from God, loved by God and those around here.

2018 World Down Syndrome Day

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