Blood, Sweat & Tears

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A diagnosis of Down syndrome comes with many things. Most of which sound scary, especially the list of potential medical problems. From heart problems to thyroid to respiratory, the list can be overwhelming and intimidating. Children with DS even have their own Pediatric Guidelines for testing.

Lily has no heart problems. This is huge, as many of her friends are members of the mended hearts club. She is and will be tested annually for any thyroid problems. This involves a blood draw. In Lily’s young life she has had several blood draws. When she was 3 months old she spent 9 days in the hospital with pneumonia. As scary as that time was, nothing compares to last December.

Lily has had trouble gaining weight – this is common for children with DS and can be the first indication of thyroid problem. So her pediatrician ordered a blood test. Here they would test for a slew of problems including leukemia. Lily’s blood test came back with high phosphotase levels. A second blood draw, and a consult with an endocrinologist later we were told she may have bone or liver disease. To rule it out she had to endure yet another blood draw and a bone scan of her entire body.

She had so much blood drawn, she was put on a 30 day suspension from any further blood draws- meaning she had no more to give and needed time to allow her body to recover. The bone scan consists of x-raying every bone in her body. Not painful but a little uncomfortable and very scary for a 1 year old.

The day Lily had the bone scan was a hard one for this mama. I was pregnant with her brother and could not be in the room with her. Knowing this ahead of time, her Aunt Sarah was able to come and take my place to guard over her and offer her comfort. I sat outside the room and listened to her cry for what seemed like eternity. I knew she was in hands as good as my own with Sarah but I still ached to go in and ‘save her’. Once completed, the waiting game began.

Her Endo Dr said he would call if there was bad news and send a letter if it was good news. Obviously we prayed for a letter and jumped every time my phone rang. Days passed and we got the glorious letter we hoped for (well sort of). It stated that ‘nothing noteworthy was seen” but also said a follow up blood test would be needed to rule it out completely.

It is truly strange the thoughts that run through your head when you are waiting to hear if your child is about to be diagnosed with a life-threatening disease. Or rather, the absence of thought. The looming threat over our daughter’s life was too big for me to digest at that time so I didn’t. There have only been a handful of times I have actually got down on my knees in prayer. I pray daily but not usually in that form.  I dropped to my knees and prayed, begged for my daughter. I have felt God several times in my life and know His presence well. As I took comfort knowing He was there, my phone rang. I answered. On the other end of the phone was her dr. When he said who he was, I laughed nervously and told him he is not supposed to call me because that meant bad news. He told me that he usually never calls but felt compelled to call and tell me himself that Lily was fine. She did not have bone disease. She did not have liver disease. He didn’t need to see her again.

Amen.

Since that time, Lily has remained healthy with no real concerns. She will continue to be tested every year for the various things that can haunt a person with DS and we will continue to pray for her health.

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DELAYED DELAYED DELAYED

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Whether you are a new parent or repeat parent, you will find yourself getting caught up in the excitement of your childs’ milestone achievements. You celebrate all their firsts. You anticipate their next accomplishment and try and wait for it as patiently as you can. Because as they meet each one, two things happen: 1. We know they are okay, they are ‘normal’ and 2. They get more and more fun and beginning turning into little people, not babies. Everything is wonderful until the word DELAYED enters your world.

Delayed is a scary word followed by lots of unknowns. Some things you don’t even know that you don’t know. If you are a parent of a child that has DS, then this was one of the first words you heard about your child.

We were told that Lily will be delayed in motor, speech and cognitive skills. As she accomplished each early milestone, we celebrated just as any parent. Lily was on time for all of her early milestones (rolling over, smiling, laughing, sitting up, babbling, etc). When she was learning to crawl, we got our first glimpse of how hard it seemed for her to learn it. And then how she had to practice extra hard to get the strength to go very far. So when she first crawled across the room, we celebrated hard, like she just cured cancer kind of celebration.

We felt good, Lily felt good, life was good. Her therapists all said she was developing on time and even a little ahead of schedule on her cognitive and speech abilities. Then suddenly everything changed.

As Lily was learning to cruise and preparing to take her first steps- we notice that she had plateaued, meaning she hadn’t made any real progress in many months. She had lost her motivation somewhere. Now, I will say here that we knew she would be delayed in walking at least by a little bit. They consider one delayed if not walking by 18 months old. But she had been doing so well, we weren’t prepared for what a delay would be like for her and for us.

My first glimpse into how a delay could affect my daughter, literally broke my heart. Since almost all of Lilys’ friends are walking, she can no longer keep up with them. There came a day when she was attending a party with some of her walking friends and once they took off outside to play, Lily was stuck playing alone- the look on her face when all her friends left and she realized that she couldn’t keep up with them, would make any mother’s heart ache. Since that incident and others like it, she has lost her confidence around others. My sweet, social little girl is now a shy, insecure one.

DELAYED. This word looks and feels so different to me now. Now I understand what this word can mean. Lily will walk and do all the things others can and sometimes she will be on time, or even ahead and she will most likely be delayed too.

Walking is so hard for her, not because she can’t do it but because she is scared to walk, scared to fall. We are working very hard to give her the security and confidence to achieve her desire. As parents, that is part of our sacred duty. No parent wants to see their child struggle or feel defeated, but we all will. Maybe as a special needs’ parent, we just see it earlier than others but struggles are a part of everyone’s life.

Celebrate your children’s strengths and encourage them through their weaknesses. You can bet we will be celebrating loud and proud when Lily takes her first brave steps!