Many of you will remember my post on Thanksgiving, when I interviewed 11 Mamas of babies with Down syndrome. I explained that this online community of wonderful families is what has been my life-line since having Lily. I have a list of more moms who I can't wait to interview...that post was so commented on, and to this day we are seeing visitors come here to read it, specifically.
Today I am posting my exclusive interview with one of my favorite blogging mamas...(I have always wanted to use those words...exclusive interview...it makes me feel...exclusive. HA.)
One of my all-time favorite blogs to visit is The Adventures of Pudge and Zippy.
Most of my readers were probably addicted to that happy place long before my little bloggy came to be. But just in case you have never had the opportunity to visit the Squibs, as they are affectionately known by their Mama and all who love them...GO HERE. I'm taking a risk sending you there- you might fall so head-over-heels-in-love with Jace and LC, you forget to come back here to see Lils. But, it's a risk I'll take... cuz I just don't want anyone to miss out on their delicious cuteness and daily antics.
I am always amazed at the connection I feel to other mamas of children with Down syndrome; especially when we've never met in real life. Some have become my closest confidants...and Pudge and Zippy's mama is at the top of that list.
I have written to her so often for advice, that I now refer to her as "Dr.Courtney" in my emails. I have accused her of secretly being God and posing as a blogging mama named Courtney...because she always seems to know exactly what to say to speak encouragement and sanity into my life. I am so glad to call her a friend..because I really don't have the money to invest in a psychiatrist ;)
So without further ado, here is my interview with the beautiful Courtney herself..and I know she counts me as a friend, because after some serious arm-twisting, she let me have a few photos to post of her!
Interview with Courtney Heigele
Courtney and Justin Heigele
1)How did you decide to adopt the squibs?
I grew up with a family member who had Down syndrome and worked extensively with children who had special needs before graduating from college with a degree in elementary education. I worked at a sleep away camp for children who had Down syndrome and other special needs diagnoses (autism, asperger's, etc.) The majority of the children attending the camp came from families with very high incomes that translated into lots of opportunity for the children. A handful of children were there on scholarship, and had spent their lives shuffled through the state foster system. The difference between the basic life skills of the children in those two groups was heart-breaking. The children who were attending camp on scholarship had so clearly been robbed of their potential, and it was chilling to see what they could have achieved with something as basic as a stable home environment.
It wasn't until I was 30 years old that I actually realized children were being placed for adoption BECAUSE they had Down syndrome. And, about 20 seconds after I realized it, I knew that was how my own family was meant to begin. My extended family had already embraced someone with Down syndrome and I knew beyond the shadow of a doubt that Justin and his own family were well-equipped to do the same. So I went and woke Justin up from a nap and announced the plan. It was about as out-of-the-blue as you can get, since we had never even discussed conceiving a child, let alone adopting one. Later, after LC found us, we did the math and realized my decision to ambush Justin with a request to adopt a child with Down syndrome came just as LC's (defective) heart was forming. And, since those very defects disqualified her from being adopted by another couple that had already committed to her, there's no question that God knew she was on her way and was urging us to get our ducks in a row.
And who the heck KNOWS how Jace got here. We had NO plans to adopt again when we were literally called out of the blue about Biggie. When we learned about his situation, we just couldn't say no.
I think, as much as Justin and I chose adoption to give a child with Down syndrome a home, we also chose adoption to keep families affected by Down syndrome in tact. Parents who give up their children who have Down syndrome experience A LOT of outside judgment and scrutiny. NO ONE conceives and carries a child for 9 months with the intent of giving that baby up. I know...for a fact...that both of my children's birth mothers would have moved heaven and earth to keep their children in their homes with them. But, they also wanted to provide their children with every opportunity possible to help their children achieve their fullest potential. Adoption is too often looked at as abandonment and not as the heart-wrenching, selfless sacrifice it usually is.
It was imperative to Justin and I that adoption not rob our children of the families they were born into. We stepped in to extend LC and Jace's families and feel blessed to have been able to do so. The siblings they had before they were adopted are still their siblings. Their biological grandparents are still their grandparents. And their biological parents are STILL THEIR PARENTS. We're just the set that gets the most face time. The greatest gift we can give our children is a wide group of people who geniuinely love them and are genuinely interested and invested in them. We're forever grateful to the biological families that made it possible for Jace and LC to wreck our home and steal our hearts and we feel incredibly blessed to count them as our family members.
2) How did you "find" LC and Jace?
LC was a bit atypical, I think, because I was like a woman possessed. We decided to adopt in May...had the homestudy done in June and I gave myself over my summer break to "find a baby with Down syndrome". I was an elementary teacher on break for summer, and for the first summer in YEARS I didn't take on a summer job. I made finding LC my full time gig and sent out over 250 blind emails. I contacted agencies, Down syndrome clinics, Children's Hospitals, private attorneys...you name it. We also registered with the Cincinnati Down Syndrome Guild and Robin Steele. (They keep a current listing of families with up-to-date homestudies who are interested in adopting babies with Down syndrome.)Agencies were the most discouraging, since they'd immediately respond with "We only work in the adoption of healthy babies. Call us when you're interested in one of those." I heard back from less than 5% of the individuals I contacted. By luck, one private attorney I contacted put me in touch with another attorney who was aware of LC's situation and that's how we were selected to be her family.
We learned about Jace via Robin Steele, over a year and a half after providing her with our information.
3)Were your adoptions through an agency or through the state?
Both of our adoptions were out-of-state adoptions, which legally require you to work with an agency. So, we paid legal fees as well as agency fees.
3)How expensive..really...is adoption?
A domestic adoption is an interesting ride. It can be cost-effective or through the roof expensive. The most cost-effective route is to do whatever your state requires to become a registered foster family and express your interest in adopting a child with Down syndrome. The wait would be longer, but you'd be guaranteed a child with medical coverage by the state to cover any medical costs they'd incur.
If you are interested in gaining state or federal aid toward the medical expense of your adopted child, I would have to warn against an out of state adoption. There is NO FEDERAL MANDATE on which state is supposed to provide the child's benefits and each state will point fingers at the other one until you're nearly forced to hire more legal representation to secure subsidies, etc. for your child. We were too financially exhausted by adoption costs to go to that length for LC or Jace, so neither receives any sort of benefit or subsidy. Other families have had much more success than we have, though.
And, there is a tax credit which is fairly substantial, but it's not like you're going to have a check cut for you. Essentially, whatever you're taking out of your monthly income for federal taxes is credited towards that amount. So you stop paying a monthly federal income tax...but that is NOT a huge amount for us...especially on one income. So, while it is often toted as "covering more than your adoption costs", it certainly will, but it will be some time before the entire credit is received...depending on what federal taxes you pay each month, quarter, etc.
4)What have you learned about Ds through raising your kidlets that you did not know before?
I've learned a lot about the accompanying medical conditions that commonly arrive along with Down syndrome. I had no fears about parenting a child with Down syndrome, but parenting a newborn with multiple heart defects and a feeding tube was another story. I've learned to trust myself enough to speak up in a medical situation when I think my child's symptoms are being swept under the "Down syndrome" rug and I've also learned that I don't need to face every day like I'm walking onto a battlefield. The majority of people I encounter are as ready to celebrate my children as I am and I don't need to live life as though I'm on a mission to educate the world about their chromosomal make up. All I need to do is love them out loud and thoroughly enough for LC & Jace to have a deeply rooted sense that they are adored and valued and capable of whatever they set out to achieve.
5) If you had one piece of advice for new mamas facing a DS diagnosis, what would it be?
I'd congratulate them and tell them how envious I am that they were specifically chosen to raise a child designed to repeatedly show them the face of God. I had to fight and claw my way into their club. They were singled out and exalted and it's a fine reflection of the capable hearts they've shown Him.
I'd also encourage them to trust themselves and their instincts. They don't need to make their decisions about their child or their child's care from the perspective of an expert on Down syndrome. They need to make their decisions as experts on their child.
If they have a concern that's dismissed by a medical professional, visit a new medical professional. They will know their child...with or without Down syndrome...and they will know when that child is hurting, or ill, and they must never take as truth anything they're told that conflicts with their own instincts about what their child needs. I've never regretted speaking up as an expert on LC and Jace and deeply, deeply regretted the few incidents where I didn't.
6) And finally...I hope you don't mind, Courtney, but I wanted to post something you said to me awhile ago, that was so profoundly beautiful, I just had to share...
"Our children arrived exactly as they were designed. There was no mistake here. They are a direct and unmistakable gift from God. He has given us children capable of copious amounts of unconditional love because we haven't been open to receiving the more indirect ways He's been showering it on us for the previous years of our lives."
Thank you, dear Courtney. You are...squibalicious:)