Not Fitting in the Mold

First of all, this is my first time to guest-post on No Hands But Ours blog. I always knew Stefanie was a little crazy but now I KNOW she is, since she allowed me to post directly to the site. Other guest posters will be sharing as well, so please check back often. As I have thought about, struggled, written, revised, and started completely over with this post, I keep coming back to the same purpose. I am writing this post for No Hands But Ours because I really long to see waiting children with the two needs of heart defects AND cleft lip and palate be adopted into loving families.

I desire to speak only of what I know and hope that in doing so, I can educate people to our reality of parenting a child born with multiple defects which may very well affect life span and who is so full of life that she radiates joy everywhere she goes.

It is that simple for me. I do not want a gold star. I do not want a pat on the back. I do not want anyone to think any less or more of me and my family because we chose a child whose medical conditions leave us with many unanswered questions. Honestly, I do not want this post to focus on me or our daughter, but I must speak of what I know because quite frankly I am not comfortable with all of the speculation I am seeing these days about what it will be like to parent this child or that. So often lately, I see talk on various adoption forums of how there are no more SN files of children with minor heart defects or with minor needs at all. I think if we are all honest, we all have various opinions of what minor and major is so that is not what I want to discuss here. That is a very personal decision, and while I might see one need as minor that someone else sees as major, the reverse is true as well. From that jumping point, I want to just share about our experience adopting a child whose special needs would be considered major and possibly even severe by most people. I would also like to encourage people to consider further the needs of heart defects with cleft lip and palate present.

Our journey since coming home with our daughter a year ago has not been like any other parenting journey we've faced. We have been by our daughter's side as she has endured 4 hospital stays and 3 major surgeries, 2 of which involved her heart. She has spent 21 days in the hospital in the last year since coming home and has had countless doctor visits, taken medicine twice daily which will continue her whole life, and still is facing another major surgery within the next 6 months. Were my husband and I prepared for this or do we feel like we can handle this? Well not really. We tried to prepare ourselves, but honestly we had never had a child who is sick or needed surgery or had even spent one night in a hospital. So we just take it one day at a time, and most days are just typical days with grocery runs, taekwondo lessons, homeschooling, Bible drill, scraping dinner together with some pasta and whatever else I can find to throw together, and making PB&J sandwiches for the third day in a row because I haven't made the grocery run yet.

I feel strongly that it is each individual family's choice, and yet I also feel that none of us should comment on what we have never experienced and based only on what we believe to be about a particular set of needs. Truly, unless any of us has parented a child with this need or that syndrome or whose immune system is compromised, how do we really know what that would be like? With heart defects, multiple systems can often be affected. The reasons are many, but one can be because of a genetic syndrome. And there are literally hundreds of named syndromes that involve the heart. While I believe it is one's responsibility and logical to seriously research and consider how a syndrome may be related to a child's needs, it should not lead one to make a blanket assumption about the child's abilities or inabilities. There are so many factors involved and so many unknowns as there are with any parenting journey.

I know many waiting parents might paint upon their minds and hearts the mold of a child they feel they can't parent because this child has too many needs, needs too many surgeries and therapies, has needs which may be syndromic, or the child may not live past 25. I know we did that. But the fact is … that mold painted upon one's heart is not just a mold to me. Before my husband and I got The Call about our daughter, we never even talked about the possibility that our little girl would be born with multiple needs. We had done enough research on heart defects to know it could be coupled with other needs affecting cranial areas, urogenital areas, and neurological function but we never even once asked ourselves to consider what we would do when we got The Call if the child referred had more than one need. Of course, that was not exactly responsible on our parts, but I can say we had done our research: we just never posed the question to ourselves of the possibility that she might present with more than one need. Even after we sent in our LOI knowing she was the daughter for whom we waited and prayed for, I was scared. I really was.

She was precious and she needed a family, but she had more needs than I had planned for. In all of the waiting to travel, I will tell you there was so much fear at times in my mind and heart. The two updates we received were not very promising. And I suddenly found myself the parent of a critically ill child, who was far away in another country. I had never known that before. So this was and still is new territory for me and my family.

I do not know that I'll ever be fully prepared for this path, for the questions that invade my mind at times about her life expectancy, and yet I believe God intended for her to live with a family for whatever time He allows her to live on the earth. I believe He intends that for every child: for the child who is HIV positive, for the child whose heart cannot be repaired to the point that his or her life expectancy is normal, for the child who will never walk, for the child who will not talk, for the child whose level of normalcy in this life is based not on what the world sees as a burden but is instead based on what God says is a gift.

Our daughter is simply our little girl. She is not a sick child or a special-needs child. To us, she is as typical as any other child including our two other children. We don't limit her by labeling her. We don't hold our breath for the next surgery or doctor's report. We simply live life with her and her two brothers. She is certainly not hindered by the medical needs with which she was born. If she could tell you in understandable words, she would tell you the only reason she is special is because so many people love her and most especially because God loves her.

She runs … into our arms.

She jumps … on a trampoline … and out of a swing.

She plays CandyLand and Wii Bowling.

She smiles … and it will melt your heart.

She hugs … without abandon … those whom she has received unconditional love from.

She laughs … at her silly big brothers.

She draws flowers … and herself … and shapes.

She swims … and swims … and swims.

She cries … when her feelings are hurt or her Baby Doll's pants won't go on just right.

She amazes us … everyday … with her willingness to talk when no one seems to understand.

She thrills us … with every new word she does say clearly though her hard palate never formed and is yet repaired.

She astounds us … with her will to survive and thrive in this world that handed her a difficult start in life.

She is intuitive … well beyond her nearly 4 years of being on this earth (her birthday is next week!).

She loves … with her special heart that is physically inferior but I dare say is spiritually superior to many of ours.

She is … our daughter.

And she does not fit a mold, a perception, that many may make of children just like her, when they have never known being the blessed parent of children with multiple needs that may limit their life span, and yet who just need a family willing to first and foremost LOVE them for the unique individual he or she has been purposefully created to be.

I hope to persuade just one person reading to reconsider how a special child born with the multiple congenital defects of the heart and lip and palate and/or other systemic functions might just be your son or daughter. That is what I hope to convey in this post: the true reality of life with a child whose needs are considered major, multiple, syndromic and life-threatening. If I can ever be of any assistance or encouragement to anyone considering bringing home a child born with multiple defects of the heart and/or cleft lip and palate, I would be honored to share what I know or just to listen and be there.