Our Down Syndrome Journey

When Gregory Kenneth and I were talking about having babies, I told him I had always secretly wanted 3 girls and a boy. My Aunt and Uncle had 3 girls and they were such a fun little family. I wanted to emulate their lives. Growing up, my cousins were very tall and had beautiful flowing dark hair. They were beautiful girls and as it turns out they were also pretty darn smart. All three hold degrees in engineering. Already, without consciously being aware of it, I had my 3 unborn children’s lives already planned out!! BUT Greg agreed with me. He worried about being to hard on a boy…and reasoned that little girls he could just love and adore, which he does very well!

He also had a similar story to mine growing up…his family is friends with another family which has 3 beautiful, smart and talented girls…who seemed to do well in school and personally. So we agreed it would be fun to have 3 girls. AND upon hearing the ‘sex’ at my 24th week ultrasound of our 3rd child, our lives were aligning with the stars. The God of fertility was smiling down on me.

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cropped-blog-168-e-1-of-1.jpgI played with Abby and Phoebe everyday, telling them about their baby sister and how they are going to have to help mommy take care of her. We told the girls the name we had chosen for their baby sister…Abby was extremely helpful all through the pregnancy and couldn’t wait to meet this little girl. Phoebe was…oblivious. That’s just who Phoebe is right now. We have had our sweet dog Bear, for over 6 years now…and Phoebe who is almost 2, just realized we have a dog…whom we call Bear.

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Following the news of the sex, I washed and folded all of Abby and Phoebe’s ‘newborn’ and ‘0-3’ outfits and decorated the nursery in a new theme for the little bundle. I was dreaming of how I was going to hold her, look at her, smell her and what kinds of things we would do together. I wondered what her personality would be like…what her interests will be…whether or not she will get along with her sisters and if she will prefer one to the other. I made wishes at 3:33 and 5:55 everyday for months that we would have a great relationship and she would be a happy and healthy baby. Abby and I would throw pennies in fountains and make wishes…Abby wished for a blue princess dress and wished for a sister…I of course always wished for health and happiness. Those wonderful months were spent just dreaming of this wonderful life we are creating and living.

On Thursday, July 28th Gregory Kenneth and I were kissing the girls and saying our last goodbyes and going over last-minute instruction/details to the girls schedule with my mother-in-law. She was planning on being with us for two weeks when the baby was born to help out and spend time with two girls who love and adore her.

At this point, I had my bags packed for 2 months occasionally taking the clothes out to wash and put more lovey toys in and good smelling dryer sheets, her baby book and my nursing cover…everything was perfect and ready to go! I was nervous, anxious and all of a sudden thinking of Phoebe and how I was worried I wasn’t going to be able to spend time alone with her anymore. I gave Phoebe extra hugs and kisses and whispered in her ear of my plans to spend some ‘mommy and Phoebe’ alone time when I return!!!

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Before I knew it we were off to the hospital in Greeneville. There we were being set up in our room, Magnum P.I. from Netflix, trash magazines holding the latest in celebrity gossip, my knitting for any spare time that wasn’t devoted to trash magazines and my trusty camera to capture the beauty that was sure to unfold within the next 24 hours!!!! I sat in the hospital bed with the beautiful gown the hospital provides and I felt my whole body sink into the mattress. I was so tired…

My mom came by for a little while to catch up. We visited for an hour or so and she was off with promises to return in the morning. I spoke with both of my brothers, who were very excited for us. My sister was sending last-minute texts to make sure we had the same dates for her upcoming visit…everything was progressing smoothly.

Greg and I talked about how tired we were and how nice it was to be alone together, even if it was in a hospital room. We kicked back and turned on the television to watch Tom Selleck solve mysteries and look wonderful while doing it!

At 4 am the nurse came in to start an I.V. I have one word…Pitocin. I have another word…Ouch! We don’t get along the Pitocin and me. However, it certainly got things moving…and at 11:22 am Miss Cecilia Rae was born.

The pain was a little more intense this time around than it was with Phoebe. Of course the most intense pain was with Abby, but never-the-less all I could think about was Miss Cecilia. I looked at her, kissed her and tried to nurse but she didn’t seem interested. She seemed to have some facial trauma, specifically to her eyes, but to me, she was breathtaking! She received a 10 on both of her APGAR scores…already! We sure were proud. Daddy and I took turns holding her and gazing at her. I was able to get some pictures and before I knew it, they whisked her off to the nursery for more testing and a bath.

I was moved to another room and the visitors began to pile in…gifts, flowers, smiles, hugs, happy words and some tears here and there. Greg went down to the lobby to greet his mom and the kids. My sister-in-law, nephew and niece were in the room with me talking about Cecilia and how she is surprising and making us proud already.

The on-site Pediatrician walked into the room and made a funny comment about my brother who is a colleague of his. He became very serious and turned to me, with my sister-in-law, niece and nephew in the room and said something like “We have some concerns about Cecilia, it looks as if she may have Down syndrome…heart conditions…sometimes require surgery…low body temperature”. That’s what I hear and how I heard it. I couldn’t believe it. I think my inner ‘fight or flight’ mode kicked in when he mentioned Down syndrome because my body suddenly felt very warm. I could hear my heart pounding in my chest… and I think I said, “okay, stop talking cause I can’t understand what you’re saying and I need my husband here” but he kept right on talking.

My poor sister-in-law realized what was going on and was on her way over to sit with me, hug me and console me, but saw my face and told me she would get Greg. I looked at my sweet nephew and niece as they stood and walked out of the room and then the tears started coming. I couldn’t believe what I was hearing…I just needed Greg. The Pediatrician kept right on talking but the only things I heard were surgery, heart, tongue and something about a space between her toes and a situation with her pinky finger.

I was running on pure adrenaline, my hormones were out of control and I was alone with the man we now refer to as ‘PIG VOMIT’ who will now be referred to as PV. Not very mature, I know and I am not proud. We would like to thank Howard Stern for coining the phrase however as it really seems to sum up our true feelings on the man himself and the way he chose to share the information with me.

As Greg enters the room, sweet Abby Leigh is close behind…and upon seeing my face he looked worried. He was walking over to me as the doctor reiterated the news about Cecilia’s diagnosis. I remember Abby sitting on my bed at my feet watching tears stream down my face. This is not how I pictured Abby’s introduction to her baby sisters arrival. However, it was our current reality. I looked to her to search for signs of being scared, but she was just looking at me trying to make sense of what she was seeing. Sweet girl. I was sad she had to see her mommy like that.

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At this point I just wanted to hold sweet little Cecilia. I wanted to smell her, kiss her and never let her go. BUT she was in an incubator due to her inability to regulate her own body temperature, I could see her in a little while the nurses told me.

The next couple of hours are a bit blurry to me now…I remember our family sitting in the room with us my mom, Greg’s mom, my brother and my doctor coming in. I was only concerned with one thing, I was under the impression she needed heart surgery and we were transferring her to either Knoxville or Johnson City for the procedure…everyone assured me I was wrong! I thought I heard surgery and that’s when my brother stepped in to help Greg and I understand and make sense of the news we were getting. He explained Cecilia had a small hole in her heart called a PDA which isn’t specific to infants with Down syndrome, but had the potential of clearing up on its own. They were transferring her because they wanted to keep an eye on her PDA, body temperature as well as her intake of milk.

I just wanted to hold my baby. I cried at the thought of her having to go to a hospital all alone. I didn’t want her to be alone…ever! She needed her family and we needed her. Yes I was terrified and devastated by the news but the idea of her being alone left me feeling like I was failing her in every way. Luckily, Greg and his mom were going to drive down to be with her. With daddy by her side and Busha there to help him be strong I wasn’t as concerned with her being alone and thus I was free to rest. I was free to be alone with my thoughts. It’s a terrible feeling not holding your child and being alone after giving birth. My thoughts were strangling me. I didn’t have Greg there to help me sort out the chaos racing through my mind, which made me even more uneasy. Luckily my sweet mom spent the night with me. She comforted me and slept on an unforgiving mattress.

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The next day bright and early my Doctor did his best to get me out of the hospital as quickly as possible. My brother and his wife were taking me to Johnson City to be with Greg and Cecilia.

The private lives of two people when they undergo an unexpected event can either strengthen or weaken their bonds…I must say Greg has been my strength since the very beginning and this proved to be the same. The things we said, the tears we cried, the hugs we shared I can never reveal, but suffice it to say I have an amazing husband…I am very lucky.

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Cecilia spent the week in the NICU unit in Johnson City Memorial Hospital. We were there everyday by her side, having dinner every night with Abby and Phoebe and sleeping at the Ronald McDonald house every night. This was our routine every day for the following week. The concern and curiosity Abby had for her baby sister’s health was devastating to both sets of grandmothers. We didn’t know what to say or how to explain. We just said, she needs to get better before she comes home.

We wanted the moment of Abby meeting her baby sister to be special. Phoebe we were also concerned with, but she’s just so young at this time. Both girls saw Cecilia while she was in her incubator in Greeneville. When Abby saw her for the first time in Johnson City it was love at first sight. No judgements, no barriers, no excuses…this is her sister and she loved her from the moment she saw her with EVERYTHING she had…in true Abby form.

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Over the next month, I struggled to get my footing under me…to make sense of everything. I wanted to read everything, I wanted to meet children, infants and adults with Down syndrome. I wanted to educate myself. I was tremendously overwhelmed with thoughts of what her future held; health issues, cognitive ability, her appearance…the list goes on.

Right from day one, she was a great sleeper…which helped me enormously. My hormones were making a mass exodus out of my body and I needed all the sleep I could get…and she was giving it to me. 6-7 hours at night. With each passing day, I was feeling better, little by little. She was so tiny and had such a cute little face…adorable really, she looked a lot like Abby as a baby. She just wanted to be held and to eat. I was noticing when I was with her, holding her, I found my concerns for her future faded away. Greg told me to spend time with her…do what I needed to do to ‘get right’ with everything.

So I did.

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Four months seems to be our magic time frame for getting back into the swing of things. At the time of writing this we are at our 2 months, one week and 6th day mark…and I must say I feel quite good. I still have moments of being terribly overwhelmed with concerns, but I try to ground myself in the here and now…I try to notice how my feet feel in their shoes or on the floor, I take stock of the smells which are surrounding me, I really try to ‘see’ my children or whatever happens to be in front of my face when I am feeling scared, and most of all I think of all the things we DO have control over…the love we give to each other. It really seems to help.

Which brings me to ‘living in the moment’. It’s hard because I constantly have to stop myself from thinking ‘what’s going to happen in the future’ thoughts which I cannot control or predict. It’s my nature to automatically turn to those thoughts and trying to stop that particular habitual act, is almost impossible. So I have settled with just trying to realize when I am having a moment of ‘scary thoughts’ and ground myself in the here and now.

Everyday I am doing something I would normally do…laundry, snapping pictures, taking my motley crew to the park, grocery shopping, ballet class, speech therapy sessions for the kids, doctors appointments, and so on and so forth. I am doing everything with Cecilia I would normally be doing with my other children; I am nursing her, talking to her, singing to her, trying to make her smile and laugh, cuddling with her, spying on her while she’s sleeping and smelling her breath, bathing her and loving on her as much as I possibly can.

Life goes on.

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It can be a wonderful thing…If I allow it to be. It is a personal goal to continue making memories with my family and try my best to live in the moment. I really do love life, I love kind people, I love my husband and our kids more than I can ever express and I really am a very lucky person and I am thankful for my life!

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By the way, I recently came across an author who has some feelings about ‘perfection’. Her name is Madeline Levin and she eloquently states,” there is no “perfect”

child

brothet

sister

mom

dad

grandmother

grandfather

family

marriage

home

vacation

holiday

haircut

outfit

car

or

friendship.

This is real life, and we would all do well to cast the notion of ‘perfection’ out of our lives and get on with the real business of living. Living with strengths and weaknesses, abilities and deficits, accomplishments and failures.

This is how we help our children learn the ‘art’ of living; by encouraging them to take pleasure from their efforts and successes and to tolerate their limitations.” I would like to strive to adopt this philosophy in my own life.

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14 thoughts on “Our Down Syndrome Journey

  1. I think she’s gorgeous. As her great-aunty Annette, I have to say that I wish you lived closer because I would love to meet her in person.

    As for PV… well, I have a couple of names for him too.

  2. So Beautiful. I am humbled that you like my silly stories after reading this. As for PV, I don’t even have the words to tell you how sorry that makes me feel. Thank you for sharing your journey with us.

  3. Angie u write so beautifully. Ur blog brought tears to my eyes reading what u went thru. I am sure it has made u a stronger person! I really admire you and your strength and positive energy you radiate!

  4. Angie, this is a beautiful blog. I knew you were a beautiful person before. Now I know it is not just in your skin.

  5. Angie, I didn’t know about Cecilia, but I have to tell you that she is a BEAUTIFUL baby and she couldn’t ask for a better mommy. I’m so sorry that you dealt with an idiot like PV as your first exposure to what was going on… he mismanaged the situation so horribly that it makes me embarrassed on behalf of the medical community. Obviously, that’s not the way to handle this.

    Your family is truly beautiful… I hope to meet your husband and your girls some day. Hugs and kisses from New York!

  6. Angie Beth – Thank you for telling us about your blog and sharing this story; We will never forget “that moment”, and reading about it in your own words just brought it all back to me. Cece is a beautiful little girl, just like her sweet sisters, and they are all so very lucky to have such wonderful, loving, parents — We will miss you all but look forward to keeping up with you in sunny Florida via this blog! XOXO

  7. Oh, my. I had to hold back a few tears reading this. I wish I had known the name PV; we had two or three who earned that title! So glad to see you soon literally embracing the journey.

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