This is my daughter, Ayla Lorraine. The link above is one way we are helping to support our daughter in her adventures in life.
August 2012 14 1/2 months old
October 7, 2010 we got ultra sound proof of the adventure we were beginning and had a completely different idea of what we were about to get into.
Ayla Lorraine was born on May 16, 2011 (Due on May 26) after a healthy, uneventful pregnancy with regular OB appointments and a fairly quick all natural delivery. Her Mommy: myself, 19-year-old Cassidy. Her Daddy: my then fiancée and now husband, 20-year-old Drew. As our first child, first grandchild to both sides, and first great-grandchild to some, our baby’s arrival was eagerly awaited.
April 30, 2011 36 Weeks 2 Days
When my baby was born I felt a great sense of relief (Duh! I just pushed a baby out of my vag without drugs!). We hadn’t known the gender so it was an amazing feeling to have the combination of the relief and then the words, “It’s a girl!” exclaimed in the beautiful english accent that my wonderful nurse had. [: To also hear that she scored a healthy 9 on the APGAR screening and weighed 6 pounds. I had my Drewbie, his mommy, and my mommy figure and I could not have asked for a better birthing experience with the people that I love present.
A few hours after she had been born when the commotion had calmed down, visitors were slowing, and we had been moved out of the delivery room it was just myself, Ayla, Drew, and his momma. I was quite content now that everything had calmed and I could rest after having not slept all night. One of the doctors had come in and had introduced himself and then continued to inform me that my daughter has a few characteristic signs of Down Syndrome such as lines on her hands, spaces between her toes/fingers, and the way her stomach muscles appeared. He had asked if we could go ahead and take a blood to test to see if it is for sure Down Syndrome but also he seemed to be kind of nonchalant as though he doubted this diagnosis but wanted to be safe. I was fine with this test. Might as well rule it out, because I know my baby girl is perfect and Down Syndrome is one of those things that doctors find prenatally. My ignorance helped create the best first few days with my baby possible despite her struggle to nurse. Again another situation where the best people for this event were present.
For the next four days I had the thought in the back of my mind but was more focused on our sudden new lifestyle, managing the amount of people in our tiny apartment that we shared with our dear friend, dealing with unnecessary drama with my end of the family, and getting this baby to nurse! But alas, I did finally get the anticipated phone call: a phone call I will never forget but at the same time cannot tell you what was said. Besides giving birth, this was the most physically and emotionally exhausting day in my baby’s life for me. Whenever I think back on it I can feel my body and chest wanting to collapse and usually feel tired.
Ayla, my baby, has Down Syndrome. In that moment, to me, a part of my four day old that I had just been enjoying, died. Even though I loved ones and supporters were all around me and I wasn’t the only one going through this, I felt extremely alone and that no one could reach deep enough into my hurt to even begin to heal it. Long story very short there were flashing emotions of hurt, hatred, helplessness, anger, pity, shame etc. all towards myself and her in those next few minutes, hours, days, weeks, months, and eventually next thing we knew it was her first birthday.
Knowing now what we didn’t know then I am sure the doctor was sure of this probable diagnosis but I am not critical of his method of telling us. If it were any other way I probably would not have enjoyed her first few days as I had. I appreciate him, though he is no longer her doctor. (We got her a pediatrician instead of the general practitioner and are extremely glad we did)
At first, Drew and I wanted to keep very quiet about this. Not necessarily secretive because that sounds more negative than what we were going for. We needed time to process what just hit us full blown into entire bodies. We needed time to begin to research what this really is, what it’s about, and how to tell our family and friends and how to treat their reactions. We also wanted people to enjoy and love her as I had her first few days before I, “killed” a little bit of her for them as well.
Now, we see different, and were shocked to realize how many people around us also saw different right away rather than having to grow into it.
Some of our dreams for her have died, most of them I don’t really even remember anymore, and so many more were dreamed up. So many bigger, and more important dreams are there and they’re much less selfish.
We ended up slowly telling our friends and family in person between the ages of 2-4 months.
More long stories short:
A pediatric cardiologist became involved fairly quickly: She has an Atrial Septal Defect (her heart has a hole in between the top two chambers) but it has not given her any problems and seems to be slowly closing on its own. Yay! No surgeries. But surgery is not completely ruled out yet.
It took four long, exhausting months full of finger feedings, nipple shields, breast pumps, and bottles before she finally learned how to nurse! But she did it! I weaned her in June 2012 to better my mental health even though I felt she should still be receiving the benefits of breast milk. She is now on toddler formula and whole cow’s milk when we’re out of formula/the occasional night waking.
She has seen specialists for her eyes and ears with no problems! Heart, eyes, and ear problems are common with Down Syndrome.
She also has seen dentist twice. She recently cut her first two teeth, which are her upper molars.
Since she has been 10 weeks old she has been going to playgroup therapy with other ‘disabled’ babies with an occupational therapist, physical therapist, speech therapist, and many other qualified people to work with her. We also have had a ‘play nurse’ come out to the house to work on occupational therapy once a week since she was 10 weeks old which has now been replaced with a speech therapist at 13 months and a separate physical therapist come out to the house since she was four months old. She is also involved in Early Head Start and I am now the parent representative for her teacher.
She is currently blabbling, understanding our signs (sign language), laughing, exploring, slow ‘army’ crawling while attempting to ‘regular’ crawl, sitting herself up, pulling herself up to stand (today!), has two teeth (upper molars), is hand feeding herself, and sometimes letting us help her utensil feed herself.
She looks like mommy, has eyes like daddy’s, strawberry blonde hair with little curls at the bottom like daddy’s, and had a little birth weight: It’s actually everything I had ideally wanted in my child with Drew before she was even conceived. Did I get everything I wanted with a “catch” or with even more?
So, having said that! Whoo! It shows how much my husband and I have been through the past two years of our lives together. This does not even come close to show how much we have learned, will learn, or how much we didn’t know before, but we’ve gained A LOT of knowledge tolerance, acceptance, LOVE, and new perspectives.
We would love if the rest of the world could learn a lot of this stuff with us or at least be open and tolerable to it but we really don’t want to put everyone through our struggles either. This has been a very long blog post, but HEY! IT COULD BE LONGER! Much longer. But it was also necessary.
You see? This has been a much different adventure than we thought it would be! For everyone involved.
Some of the basic misconceptions we’ve learned:
You don’t have to be ‘old’ to have a child with Down Syndrome.
It doesn’t matter if it’s your first or not.
Not every case is ‘caught’ prenatally.
People with Down Syndrome are so much smarter and stronger than stereotyped to be.
AND SO MUCH MORE!
This November the Down Syndrome Information Alliance (based out of Sacramento, Ca) is hosting their annual Step-Up for Down Syndrome Walk. This year we have created a team to help fund raise for this non-profit that has helped us and so many other families. The link at the top of the page will lead you to our Facebook event for it which will also have link to our walking team, Ayla’s Adventurer’s, and to the site about the walk and the organization itself.
The Down Syndrome Information Alliance is there to create awareness and to create an informed and tolerant community about Down Syndrome and the people with Down Syndrome.
Downsyndromeinfo.org
Please, if there are any questions about anything, do not hesitate to ask!
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