A Day to Celebrate Down Syndrome
Down Syndrome is not a death sentence…
When you are given the diagnosis for your new born baby that he or she has Down Syndrome, it may seem like the end of the world, but really it is a day to celebrate down Syndrome. I think that implementing a day to celebrate Down Syndrome is so appropriate for this reason. I think the scariest part of finding out was the unknown. What would our life be like? Would she talk? Would she ride a bike? Would she go to college? Leave the house? Get married? There were so many questions and it was so overwhelming. I am hoping to shed some light on how it’s really not the end of the world.
Lean not on your own understanding…
I will never forget the day our little Fiona was born. As a new mom I had no idea as to how many things can go wrong in life. Life is not easy and NOTHING is perfect. Fiona was our second child, but only 16 months apart from her sister Trinity. One of the things I do remember is that on my way to the hospital I heard a sermon about my favorite verse. “Trust in the Lord with all your heart, lean not on your own understanding and in all ways acknowledge him and he will direct your paths.” Proverbs 3:5,6 I remember in my heart how God said, “Don’t lean on your own understanding.” I had no idea what this meant but I was soon to find out.
When we arrived at the hospital, I was admitted and in labor. My labor that day was pretty unremarkable and not much to really comment on. What I will never forget is how after she was born they laid her on my chest. I just held her and kissed her thinking nothing was wrong and how much I loved her. My husband and I were undecided upon a name and so we decided if she was blonde she would be Fiona which means fair and beautiful or if she had dark hair she would be named Hannah. Well, as you can see she is a blondie.
After all the usual clean of the birth, my husband ran to get us something to eat I think. While he was gone the pediatrician came in and said “I think we may have to do some more chromosomal testing on your child.” I knew immediately something was up, I just wasn’t sure what. I think I said, “what?” “Can you please get my husband?” “Can you please tell me what that means?” From that moment my joyous birth immediate changed to mourning and crying.
I remember when they said “We think she may have Down Syndrome.” It felt like a death sentence. A million questions entered my head. I began to mourn the child I thought I was going to have. I shed many tears in the hospital. It was so hard to seem happy to the visitors that came. Both my husband and I questioned if she really had Down Syndrome or if her features resembled a person with Down Syndrome.
Eventually we did get the diagnosis. Do you know what the weird thing was? There was no counseling, no one told me how to raise a child with a disability. We were not given a pamphlet, help, nothing. I think right from the beginning my husband and I decided that we would raise her like any other child. Many people tried to connect me with others that had children with DS but I wanted nothing to do with it. It had to be on my terms and when I was ready. Again there is definitely a mourning process and there are many stages of it.
Fiona proved to us that she was like any other baby. She did everything our little Trinity did. She ate, she pooped, she slept. LOL She hit all her milestones, just a little later. We learned to celebrate each milestone (I mean we really go bonkers), we learned to be patient, we are still learning to be patient. LOL Fiona brings so much joy to our life.
I remember I read a lot of stuff on the internet trying to find out what our lives would be like. One of the blogs I came across was Kelly Hampton. She has a daughter with DS as well. Her blog really helped shed some light and let me know I wasn’t crazy for feeling the way I felt. I felt like the worst mom. She said to think of it like you had planned a trip to Italy but instead realizing when you got there you made a trip to Spain. Both are great, they are just different.
Fiona is like all the other kids, she cries when she doesn’t get her way or when her brother or sister does something mean or when she gets hurt. She will manipulate to get her way. She is so smart! Like I said her milestones took a little longer, but she got there. She plays, goes to gymnastics lessons, swim lessons, rides her bike, dances, draws just like her siblings. She is potty trained and through the night too! She loves to help me cook and we even took her skiing this year. She did fantastic.
Fiona is now is 1st grade and is learning to read and to do simple addition problems. I am so amazed! Her speech and conversation keeps getting better and better. She is absolutely hilarious, as you can see in her photos. She has lots of friends. She goes to all her specials with a regular 1st grade class and has friends there as well. I know I mentioned friends twice, but this is something you worry about with a child with a disability. Will they have friends? Yes they will!
So, yes it is a process, but I am a better person because of it. Part of why I am writing this blog, to help people like I was helped. Sometimes we just don’t want to talk to someone. We just want to read someone else’s experience to see what normal is. Believe me, you will celebrate. We do! Oh and don’t forget to wear your crazy socks!
Please feel free to reach out to me if you need some encouragement or prayer by clicking here.