Why is December 15 significant to us?

Why is December 15 significant to us?

Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton

 

Ever since our daughter was born, I have seen moms sharing their child’s Heartiversary in our Down syndrome heart warrior support group. I often wondered why they would want to celebrate such a traumatic day.

I never planned on celebrating the day. I don’t celebrate her other surgery days. Then several weeks ago, in a quite time with The Lord, I asked him why would I want to celebrate such a traumatic day?! Surprisingly and almost instantly I felt the Holy Spirit respond, “to celebrate me and all that I have done!” Wow! I was knocked down a few inches. GOD HAS done so much in and through our daughter. She is a living, breathing, not-yet-walking miracle!

One year ago today our precious and extra lucky girl had life saving open heart surgery. I can vividly remember holding our daughter as we walked those brightly lit hallways going this way and that, until we arrived at the operating room. I remember trying to hold back the tears as we hugged and kissed our precious baby girl, hoping it would not be the last. The nurses and surgeon assuring us they would take good care of our precious girl as we handed her over to the anesthesiologist and watched him carry her into the operating room.

As a parent that was one of the hardest moments I have ever faced. We knew she needed this surgery in order to survive. However the thought of knowing that your baby is going to be put under anesthesia, have her chest cut open, her sternum sawed in half and her heart stopped and put on bypass in order to repair the heart defects, is a traumatic thought.

The trauma doesn’t stop there. Even though she was a baby, she knows, her body knows. She was taken by strangers, she had tubes and needles poked in her body, she felt sick, she vomited and she felt pain. Her recovery was great and also rough. Our daughter was discharged just 4 days after her open heart surgery. However we had to figure out how to manage her pain for weeks. Her incision struggled to heal as she is extremely sensitive and her body rejected some of the stitches leading to infection. For months and months she refused to be held chest to chest. She stopped all breast feeding after open heart surgery, and I still struggle with it to this day.

BUT our little girl blossomed almost immediately after open heart surgery. She started hitting milestone after milestone and her personality really started to show. She began sitting up, scooting, crawling and getting into all kinds of trouble! (She is a Boyer!) She is so brave and so strong and she is a warrior, our beautiful extra lucky heart warrior.

We thank God for blessing our family with our extra lucky girl! We thank God for helping her make it through multiple surgeries and numerous procedures! We thank God for her ability to eat orally and ditch the g-tube! We thank God for the progress that she has made! We thank God for the life He has breathed into her!

Wither you choose to celebrate days like this or not, we choose to celebrate our daughter each and every day. Her strength and determination along with her precious smile and giggles make us all want to squeeze her and kiss her constantly. She is our precious and extra lucky child, and she is dearly loved!

Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. – Roman 12:2 NIV

Down Syndrome Awareness: Video

Down Syndrome Awareness: Video

Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.

With the help of some beautiful faces from our DSDN January – June 2020 Birth Group we created this video for Down Syndrome Awareness Month.

I just loved seeing all these smiling faces together! I shed alot of tears putting this video together. Just knowing all the obsticles many of these children have overcome or are in the midst of conquering brought so many tears. These children continue to spread joy and light and are such an inspiration to all!

A special thank you to Marina Roman and Rebecca Rollo for you help with this project.

We feel it is important to remember out friends who have gone on to heaven. They are family and they are never forgotten.

Mila Piper Wren Layron
01/01/2020 – 05/29/2020

Mila Grace Quinn
01/24/2020 – 05/21/2020

Warner Lawson Albertsen
02/11/2020 – 10/04/21

Theodore Gene Huls
04/03/2020 – 01/11/2021

Maxine Ruby Helgerson
04/14/2020 – 10/30/2020

Elijah D’Anthony Brown
04/18/2020 – 08/25/2020

Ellie Jane Mitrovich
04/22/2020 – 06/26/2020

Everett August Herb
04/25/2020

Piper Joy Stanton
04/25/2020 – 05/02/2020

McKenna Kim Bennett
06/11/2020 – 08/30/2020

Kendrick Bello Porter
06/21/2020 -09/21/2020

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV

Down Syndrome Awareness: Olivia

Down Syndrome Awareness: Olivia

Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton

Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.

The day Olivia Joy was born was one of the most incredible days of my life. She came swiftly and serenely in the stillness of the early morning. The moment I laid eyes on her, I knew in my heart that she was remarkably unique. As she peacefully rested on my chest, I was overwhelmed with unconditional love and gratitude.

Mere moments later, she was whisked across the room for evaluation. I intently watched every move of the medical staff. Their hushed whispers and the notable concern written on each of their faces were simultaneously puzzling and intriguing.

Shortly after the murmuring ended, our doctor came over and told us that Olivia had several of the physical markers for Down syndrome. The moment those words left her lips, a smile spread across mine. The presence of the Lord felt tangible at that moment. I had undoubtedly just witnessed and participated in a miracle. Olivia was the fulfillment of a desire the Lord had given me a decade prior.  She is a living, breathing testimony of the Lord’s goodness.

I have spent the last year and a half falling in love with Olivia every single day. It turns out that her extra chromosome makes her extra sweet, extra affectionate, and extra special. Her “extraness” is a good gift from the Lord that our family does not deserve. We celebrate His intentionality in making her EXACTLY how she is supposed to be. To wish away the diagnosis of Down syndrome is to wish away Olivia as we know her.

One of the things I pray for often is that Olivia will know that she is worthy. She is an equal daughter of the King. She is a treasure made in the image of God. Her worthiness is not contingent on the ability of others to see or acknowledge it. Man cannot take what God has given.

Down syndrome is a gift. Olivia is a gift. The fact that we get to have both in our family is an incredible blessing. To God be the glory, great things He hath done!

You can follow us on Instagram @DownSyndromeDarling

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV

Down Syndrome Awareness: Jordyn

Down Syndrome Awareness: Jordyn

Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton

Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.

Jordyn came in with a bang and brought a whirlwind with her, but one that has taught us a deeper trust, a deeper surrender, and a deeper love.

She was born with a congenital heart defect, which she had surgery for this past September. She was also born with Down syndrome.

When we first heard the news we couldn’t help but to have all sorts of fears about what this would mean. In Kelly’s words “I’m ashamed to say I was worried, about how our ‘not so perfect child and family’ would be perceived.” But you see, she IS perfect.

Jordyn is “fearfully and wonderfully made” by my God, who doesn’t make mistakes! She was knit in my womb, perfectly in the image of God for a unique purpose.

Yes, this may be different than we expected, but we are so so in love with our little warrior.” Jordyn lights up every room she enters and has a contagious smile, which she has spread to every doctor, nurse, tech, therapist or anyone else she has met.

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV

Down Syndrome Awareness: Eden

Down Syndrome Awareness: Eden

Down syndrome Awareness Month : Eden
Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Eden

Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.

Our daughter Eden is a pure joy! She has overcome so much in her short lifetime so far. If there is one thing I wish people could know about her, it’s how incredibly strong she is!

When I say strong, I mean physically and spiritually. Eden possess a strength and determination like none of our other children, it can often be described as stubbornness! But I believe God created her and other children with Down syndrome this way because they have to overcome so much.

Just the simple fact that Eden, a child with Down syndrome, was born at full term is a miracle. According to Fetal Loss in Down Syndrome Pregnancies (1), 43% of pregnancies end in a miscarriage or still birth.

Before she made it out of the womb she was fighting to overcome a breech birth, PPHN, temperature regulation, low oxygen saturations, multiple heart defects, intestinal blockage, and on and on. She has so many diagnosis in her chart, I can’t even remember them all.

Eden had her first surgery at two days old! She had another surgery at 1 month of age, countless procedures and open heart surgery at 9 months of age. The CDC (2) states that 5% of children born with Down syndrome die before one year of age. This has been evident in our support group and our hearts break for those families that have lost their child.

When you hear or see people mention “The Lucky Few” it’s referring to the families that are lucky enough to be blessed with the gift of a child with Down syndrome. When you learn and see the statistics, as parents we realize how truly lucky we really are!

– – –

1 Morris, Wald, & Watt. “Fetal Loss in Down Syndrome Pregnancies.” Prenatal Diagnosis, No. 19, 14 Apr. 1999, pp. 142-145, https://obgyn.onlinelibrary.wiley.com/doi/pdf/10.1002/(SICI)1097-0223(199902)19:2%3C142::AID-PD486%3E3.0.CO;2-7. Accessed 25 Oct. 2021

2 “Data and Statistic on Down syndrome.” Center for Disease Control and Prevention, 23 Oct. 2020, https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html. Accessed 25 Oct. 2021

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. – Roman 12:2 NIV

Down Syndrome Awareness: Ariel

Down Syndrome Awareness: Ariel

Down syndrome Awareness Month : Payton
Down syndrome Awareness Month : Payton

Join us in October for Down Syndrome Awareness Month as families from our DSDN Birth support group share,
what they wish others knew about their child with Down syndrome.

This is Ariel Eduardo Perez aka baby Eddie or Lalito in Spanish. Mom’s name is Dolores Velasquez and dad is Eduardo Perez. We reside in Bakersfield California.

Baby Eddie is 20 months old. We had a pre-birth diagnosis at 14 weeks. At first I had mixed feelings, but I knew we were chosen for a reason. I have felt so blessed ever since.

Baby Eddie is trying to walk, but he’s not quite there yet. He tries to sign a few words and he is overall perfect. He says mama and papa papapapa. LOL! Life has been so awesome with this lovable baby.

Not everything has been perfect. He has had a few surgeries and was recently hospitalized for pneumonia.  Baby Eddie is doing a lot better now and he is such a warrior.

❤

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV