About Johanna

Johanna Alexis Sklar was born on Wednesday, February 27th, 2008 at 3:15 pm in the afternoon. She was a month early, but at eight pounds, two ounces, robust and seemingly healthy.

Yet Johanna had a blockage in her intestine, a condition known as duodenal atresia, which required immediate surgery. My husband Jamie and I had known about the blockage two weeks earlier, when a routine ultrasound had showed something suspicious in her stomach.  Several doctors from the NICU were in the delivery room when she was born, so they could check her immediately. And within an hour we had the news: Johanna did have an intestinal blockage, and she also had the features of a baby with Down Syndrome.

You can read about her birth and those first numbing days after delivery in the October 2008 issue of Baby Talk, linked to here:

http://www.parenting.com/article/Baby/Health/Raising-a-Baby-with-Down-Syndrome

Jamie and I never expected to have a child with a disability, and we certainly never thought we would be the type of parents who were able to handle it. But we’ve come a long way since that grim day in February when Johanna was born. Our family adores Jo Jo beyond reason, but there were definitely a few road blocks along the way. For the first few months of Johanna’s life, I suffered from severe depression.  I was afraid to tell anyone because I worried that others would judge me for those feelings; that admitting to feeling lost and overwhelmed and not up to the herculean task of being the mother to a special needs child translated into people assuming I didn’t love my daughter. Finally, when Johanna was five months old I got help. I was diagnosed with both post-partum depression and post-traumatic stress disorder and put on medication. I readily admit that antidepressants, along with hours of therapy saved my life.

Today, Jo Jo is an incredibly talkative, active, feisty two and a half year old who loves (in no particular order) reading books, chasing the dog around, chattering to her Elmo doll, playing on swings and listening to music.  Her days are filled with Birth to Three therapies, music classes, swim classes, ballet classes, trips to the park, playgroups, and tormenting her younger brother, Teddy, but she always has time at the end of the day to sing “Puff the Magic Dragon” and cuddle with me, her mamma.

My husband and I view Johanna as our daughter first, and as a child with Down Syndrome second. She may have 47 chromosomes, but her full genetic makeup comes straight from us. There are people out there who refer to individuals with Down Syndrome as possessing a “magic chromosome” or as a “gift from God.” That’s their opinion, and they’re entitled to it. But we think Johanna is magical and a gift because she is our adorable, bubbly, vicacious yummy little girl. And while she does have moments of angelic sweetness, there are many moments when I wonder if I birthed a demon child.

This blog is to document our life as a family, and to share what it’s like to raise a daughter with special needs, the rewards as well as the bittersweet moments. I’m proud of how far our family has come, and of our children.

Johanna at her second birthday party

Responses

  1. Johanna is beautiful !!!! Down Syndrome children are so precious, so loving – their smiles and laughter are infectious to say the least.

  2. “If we had known, we would have terminated” said Jamie my husband. I would be so mad at him for ever saying those words. I’m sure someone knew this and didn’t let you both know the baby had down’s.

  3. Johanna is beautiful…she will be a fighter and she will thrive!! She will be very high functioning you wait and see !!

  4. I LOVED your article “can you see me now?”, in April 2012 Ladies’ Home Journal. Heartfelt. It’s so true!!! Few people can understand what you say, but it is so incredibly touching for me. A dear friend sent this article to me and I decided to look you up. We feel exactly the same way as you and your husband! She is first our daughter and Ds is something we need to be aware of so that we can help her thrive as, and when, needed.
    I was 42+ when my precious second daughter arrived to this World, end of July of 2011. It was a hard year. It’s still hard, as she had a serious life threatening bout of anemia around 12 months of age. (Late teething and breastfeeding did not help.) She is doing well now, finally, after 3 months of treatment.

    No one knew (since we didn’t do an amnio) that this perfect angel would be born one chromosome too many. We didn’t find out until the testing was complete in NICU (she had a PDA and wound up in NICU shortly after birth). It resolved on its own and she was a typical perfect little baby.
    Despite her Xtra chromosome, she is still a perfect angel to us! Ds is not common, so ordinary people just don’t know anything about it. When you read about clinical info on the www, you become terrified. Typical MD’s just look at Ds with a clinical view and are very negative, unless they really know someone with Ds &/or are active with Ds populations.
    We even find ourselves in awkward social situations with our baby daughter, but I’m beginning to see that “people just don’t know much”. Our daughter does not have strong physical features yet, so people really look at her hard and just stare wondering IF.
    They always say “Ds people are so happy and sweet.” I feel like saying, “You have not spent much time with my daughter”. She is like us. She is happy, sad, frustrated, moody, cranky and determined like us. Oh, BTW, smart too!

    Your Johanna is adorable. Lovely! May she thrive and keep learning forever. I love your site.
    All the best and happy holidays.
    MT.

  5. Hi Hallie, it’s me again. I had to read your article in the Parenting magazine about raising a child with Ds. I LOVED that as well.
    I’ve got something interesting to say about doing amnio. You talked about how you may have done things differently if you had done the test.
    I thought about that question too. It makes me cry when I think about “what if I had done it?” I would have terminated a beautiful life (late in the pregnancy too). My father is a retired physician who would have terrorized me with all the clinical facts regarding Ds. But now, with this granddaughter, he is puzzled with life. He’s her biggest fan! Funny how life evolves, huh?

    We moved to a small W Tx town, from the state of FL. This neck-of-the-woods (or lack of wodds, hehe) is frightingly conservative.
    We are actually six hrs from several metropolitan Areas where we could have found an expert in amnio. Or could we? This is still TX.
    We were scared to take the risk, of miscarriage, with a baby that seemed perfect with the ultrasound scans. At 42 I was not going to conceive again!
    As we found out, an ultrasound does not really show much when it comes to T-21, unless there are visible “markers”. As my husband said, the screen showed 3.5% chance for Ds and, to us, that seemed low.

    We faced the question, “What would we do at 20 wks, if the result showed genetic abnormalities, but the baby seemed healthy?” It’s such a sad reality that 90% of Ds diagnosis are aborted in the US. We never concerned ourselves with the abortion “issues” plaguing US politics. We are European immigrants & are liberal minded.
    This sounded horrific, that fetuses are aborted so late, especially when you think it may be one of your own.
    Then, as the pregnancy carried on uneventfully, we shelved all these thoughts somewhere deep in our memory…

    Since the birth of my baby, Helena, I have met several parents who were faced with similar scenarios as we had. I also met younger mothers, in their 20′s, who gave birth to Ds babies. It can happen to anyone, despite the perfect family genetics or parents health. We also had dreams of our baby growing up to be a math whiz and a talented athlete (XC skiing, tennis, hiking, biking, backpacking, and swimming are some of our favorite activities).
    It’s just LIFE.
    I agree, there are much worse things that happen in life than having a child with Ds. It’s important to know that!

    We don’t have a big community here, so my main contacts are via the www or friends. My husband and I also led a very self-centered life, prior to kids, and I also had similar thoughts about child rearing as you mentioned.

    I am so glad I found your site and found another family that I can relate to. Who understand the journey we are traveling. It seems to be a very normal journey!
    All the best to you and the family.
    M.

  6. Jo is so pretty and you’re an awesome mom. It’s not easy being a part of a special needs family (I should know i am a 21-year-old webmaster/philanthropist/blogger from South Africa who has Cerebral Palsy) but there’s a lot of love.

    Nisha


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