Guest Post brought to you by a dear friend of my sisters.

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He was just 12 weeks gestation when my Dr told me the Harmony test showed a positive result for Trisomy 21.  I was confused, mad, I thought I had done something wrong.  I had no idea what to expect for the rest of my pregnancy and I instantly began to fear for my child’s future.  I cried, alot.  And no matter what any one said, I could not stop fearing for the worst.

Trisomy 21, also known as Down Syndrome, is the most common genetic mutation to occur during pregnancy.  About 6,000 babies a year are born with Down Syndrome.  That means 1 in every 700 babies born will have an extra chromosome (or part of an extra) added to the already paired 21st.

My name is Emily, and my son Spencer, has Down Syndrome.  Let me start first by telling you, it’s ok to be scared, it’s ok to cry, you may even be upset. Let me also tell you that thing’s aren’t as bad as they appear to be.  God has bestowed a blessing upon you, his own personal little angel that’s now yours to care for, and in return this angel will mend your soul.

Spencer’s Journey

             
“He may not walk until the age of four.” It was the first of the many heart wrenching and terrifying things Drs began telling me about my boy. His muscle tone, he was so weak and flimsy.

A hole in the heart, Sleep apnea,  Syndactaly of his fingers and toes, Balanced Translocation of the 7th and 8th chromosome along with the already diagnosed Trisomy 21.

I became more and more terrified.  I spent every sitting, nursing him with tears pouring down my cheeks. I second guessed my ability to handle this task. “What if I’m not good enough? What if I can’t give him everything he needs?”

But he was healthy, and a big boy too.  Weighed in at a whopping 7 lbs 11 oz even being 3 weeks early.  And the minute I saw him he latched onto my heart and he hasn’t let go since.

We spent 6 weeks in the Neonatal Intensive Care Unit (NICU) at Tufts Medical in Boston, Ma.   But, before leaving we were hooked up to a Pulse Oximeter (sleep apnea monitor) and I had a years worth of appointments set up for the little guy.

Every night was terrifying, I was afraid to let him sleep. For his whole first year of life, I don’t know who slept worse Spencer or myself,  that monitor could wake a giant.

Every week we had at least one to two trips to Boston. Neurology, ENT,   Pulmonary,  Cardiology, the list goes on and on.  Luckily, he never needed surgery on his heart and the hole slowly closed on its own.

Shortly after that, Drs learned that his poor newborn hearing scores weren’t just a fluke. He was then diagnosed with Inner Cochlea ear damage which resulted in moderate hearing loss which is not uncommon for children with Down Syndrome.

Now, most children with Down Syndrome will experience some kind of a surgical procedure before there first birthday. For most, its heart surgery and others abdominal. Spencer’s first surgery was not so serious. A routine cleaning for the ears, draining some fluid behind the drums and a placing of tubes was all he needed. But hearing that your child needs to be put to sleep for the procedure adds a whole new level of fear to the already scared parent.

Luckily, the surgery went excellent. His sleep apnea didn’t serve as a problem. And he was awake and alert only hours later. Eventually, he will be fitted for hearing aids and he would start receiving Early Intervention for PT and Speech.

Spencer is growing and reaches his milestones some earlier then others, some later. But for Spencer, reaching milestones means a celebration. Anytime he amazes me I let him know. ♡

He eventually underwent another surgery shortly after his first birthday. Spencer has (had) Syndactaly (his digits failed to separate before birth) of his toes on on both feet and two fingers on his left hand.  He conquered that surgery as well and went on to sport a full arm cast for the next six weeks.

So after my lil guy made a full and beautiful recovery from his surgery it was time to start working on his PT.  Getting my lil man to crawl and walk was something I dedicated alot of time in helping him learn how to do.

Practice, Practice,  Practice.  He slowly but surely started picking it up and at 22 months Spencer officially became a walker.  I cannot explain the joy I felt when my little boy took his first steps.

Now its very common in children that have Down Syndrome, to have a weakened immune system.  Spencer is notorious for taking the everyday cold and turning it into a week stay in ICU.

In Jan of 2014, Spencer got very ill. Putting him in the hospital for a few days with a diagnosis of RSV. Luckily, this adventure led to the discovery of something bigger.

During a routine xray of Spencer’s lungs Drs discovered a decent sized Diaphragmatic Hernia (his intestines slipped through diaphragm and was pushing on internal organs)in his gut.  He would need surgery again.

So, fast forward to May of 2014. The 23rd, the day I dreaded for months, Spencer’s surgery.  We woke up early, got ready and headed to Boston.  The prep was no different then his previous surgeries before, but my anxiety was so much worse. This wasn’t an ear tube, or his fingers. It was major internal surgery.

But like the lil’ champ he is, he made it through with flying colors. He was even up and smiling only hours later.

Since Spencer’s surgery, he has grown immensely.  With his surgery only being 5 months ago, Spencer has gained 6lbs (the largest weight gain hes ever had in such a small time).

Now I know alot of Spencer’s story seems terrifying, and I would never suger coat and say that it wasn’t.  But, I would do every ounce of it again for my boy.

From 31 hours in labor to waiting hours for him to come out of surgery.  Every tear drop has been worth it.

Spencer has taught me alot about life. He has taught me that it’s the little things that make it worth while. That every accomplishment deserves to be acknowledged. Whether its learning how to walk or learning how to dunk a chocolate chip cookie in milk for the first time.  He has shown me patience, pure kindness, but most of all, he has shown me what its like to truly love someone with every fiber of my existence. There have been days where I have sobbed for my son, and feared for his future. When he was real little, I was scared he may not even have one.

But through all the ups and downs, he has shown me how to truly live. He has taught me how to really laugh, and has shown me what a real smile feels like.

For now, and hopefully for a long time.  Spencer is healthy and has 0 surgeries planned for the future. He begins preschool in the next few months.

          

So to you moms, with children with DS or to those who are expecting. Try to not worry to much about the “what ifs”.  Remember to always embrace the little things. Whether your baby has a long fulfilling life or they are only with you for a small time. Capture the moment.   Learn to laugh and smile like your child does. But most importantly, learn to love like your child does.

                          -Emily

                     Spencer’s mom

For those of you who would like to continuing following Spencer’s Journey you can follow him on Facebook at
www.Facebook.com/ds21spencersjournney

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 Thank you Emily for sharing your story, and Spencer’s on littlecrunchy.com we are all wishing Spencer the best and hope preschool is fun and amazing for him!