Just living my life, and making it work!

Posts tagged ‘Spina Bifida’

Dear Parents of Kids with Food Allergies on Halloween, You’re Doing it Wrong.

Leading up to Halloween there was lots of things circulating social media about the plight of kids with food allergies on Halloween. Stories of parents asking, and sometimes demanding, that candy or treats be purchased by the neighbors and passed out that meets their child’s dietary needs. I’m sorry, but if you’re one of those parents you’re doing it wrong.

To be sure, I get that no one wants to see their child be hurt by feeling left out. It hits you right in the feels to see the disappointment on their face as tears run down cheeks. I get it, I really do. Although I don’t have a child with food allergies, I do have a child who struggles on Halloween. My oldest daughter has Spina Bifida, and requires the use of  wheel chair. We live in a very hilly part of the country, and several of our neighbors have steps or a large curb up to their front door. I watched as she struggled to make it as close as she could to the porches. I watched her face cringe every time she had to wait until all the other kids left the porch to be seen. I saw the embarrassment as she heard her younger brother explain that he needed extra treats to give to his sister when she couldn’t make it close enough to the door for a neighbor to see her. Of course I helped her push up the steps when possible, but there were a good many homes where getting to the front door using a wheel chair just wasn’t possible. I still held her at the end of the night while she cried about how left out she felt, and how unfair it was that she couldn’t walk like the other kids.

I noticed that several of our neighbors decorated their yards and set up tables and chairs in their drive way. She rolled right up with the other kids, and could easily participate fully in the trick or treat experience. I could put out a flyer next year explaining my daughter’s difficulty with Halloween, and ask them all to set up shop in their driveway. I won’t be doing that, and here’s why.

  1. It teaches my child to expect fairness. Life is in no way fare, and it is crippling to teach your child that it is, or even that it should be. In the real world your child will encounter frustration and disappointment. Better for them to learn to deal with those feelings in a positive way than to try to manipulate the environment so that your child avoids hard and negative feelings.
  2. It teaches my child to make her problems other people’s problems. Using a wheel chair in a world designed for people who walk requires lots of problem solving skills. Halloween won’t be the only time accessibility becomes a problem for her. Just like it is not the only time a child with food allergies has to deal with people eating potentially dangerous food around them. Teaching my child to get what she needs and wants while facing accessibly issues is an important life skill. Instead of expecting everyone else in the neighborhood to make it easy for her I teach her to speak up for herself, and let the homeowner know she is at the bottom of the porch steps.. If I had a child with a food allergy I would encourage them to say “I’m allergic to nuts, and cannot eat Snickers. Can I have those Skittles instead.”. I’d also talk about how donating the candy they cannot eat will bring joy to someone else, and promise to buy them their favorite treat they can eat.
  3. It teaches my child its not OK to be different. The fact is my child is different. She will never be able to blend in, and there will always be situations that point out to her just how different she is. I want her to know that different means different, not less than. I want her to feel comfortable and confident in her own skin. If I ran around all the time manipulating situations so that she doesn’t have to feel different, it not only robs her of practice dealing with those feelings, but it teaches her that I am uncomfortable dealing with her being different. If I cannot accept and celebrate her in her diffenetness, how on earth can I expect her to be able to?

I know it is HARD to see your child struggle, but personal growth, problem solving skills, and self acceptance are born out of that struggle. Just as the struggle a butterfly experiences emerging from their cocoon is necessary to fill their wings and allow them to fly; so too is it necessary for our children’s to fully development, and eventual  flight.  Romans 5:3 says” … we also glory in our sufferings, because we know that suffering produces perseverance; perseverance,  character; and character ,hope.” As a parent my job is not to go out of my way to fix everything for my kids so they avoid uncomfortable feelings. My job is to shepherd them through those feelings when they have opportunity to arise.

 

Why One Adoption Just Wasn’t Enough

In August of 2013 my husband and I left our three biological kids with grandparents and embarked on a journey to China. We thought our mission was simple enough. We thought we were going to spend two weeks in China completing the adoption of our son. The son that would complete our well rounded family of two girls and two boys. We could have never imagined how in  just 14 days our eyes and hearts could be opened, and our world view could be completely turned up side down.

Our second week in China we were with some other families that were adopting from our same agency.  A tour guide would take our families on outings while were were waiting for our immigration paper work to be complete. I very clearly remember standing in the door way of a shop talking to some of the other moms. These moms were second and third time to China adoptive moms. One of them looked at me, and jokingly said “Oh you’ll be back.” I adamantly protested that I under no uncertain terms would be back. We had four kids, one income, and neither of us drive. We absolutely adored our new son, but were DONE growing our family.

Fast forward about 6-9 months. We were home, our son was adjusting well, and life was good. We had some mildly rough waters in the beginning, but for the most part Kai integrated into our family like a rock star. By all American standards life was good, and we should have been happy.  I just couldn’t shake this sinking feeling that God expected more of us.  I was becoming increasingly disgruntled with chasing this thing called the American dream.  It made me feel selfish having extra rooms full of toys (play room) and computers (office/guest room) when we had seen babies being cared for in a room that was wall to wall cribs. It was clean, and the nannies were loving, but still it was wall to wall cribs. Things that I was looking forward to like replacing our floors or repainting the interior of our home just didn’t seem to matter anymore.  We had seen the aftermath of families working 12-18 hour days just to provide food and heat for their small sparsely furnished homes. Families who had no choice but to abandon their children as they would never be able to save the money needed for their child’s life saving surgery.  I had told my children 10,000 times that we put people over things, but that was certainly not what our lifestyles were teaching them.  I knew something big had to change, but I wasn’t quite sure what. I did the only thing I could do….I prayed.  I prayed that God would show not only me, but  also my husband what needed to change.

A few weeks later my husband comes to me, and tells me that he feels strongly that we should adopt not one, but TWO, more children. Not only that, but he felt like we needed an older daughter and a younger one.  My first reaction was to politely inform him that if he expected me to go back to China for two more kids that he should also plan on bringing back a lesser wife to help me take care of all SIX of our children.  After a few weeks of praying my heart decided to say yes to God, and yes to my husband. But, I said NO to adopting an older girl. I was afraid of all the chaos and issues an older girl could bring into our home. So after a few discussions we started looking for two younger girls with vision issues.

I spent hours scouring the internet, looking at every waiting child list I could find. I was very surprised that it was in fact the older girls, ages 8-10,  that were pulling on my heart. I accidentally clicked on a little girl’s profile who was 10 years old, and very clearly in a wheel chair.  Her profile was accompanied by a short video about her, and from that moment on I couldn’t stop thinking about her.  I must have gone back to her profile 100 times, but I thought there was no way we could take on a child with spina bifida, a club foot, and who uses a wheel chair. I thought her medical needs would be too expensive, and  we had no experience with this sort of special need. After all we are a family full of legally blind people. Plus she is TEN! But, almost even before I knew what I was doing I contacted her agency and requested her file. After reading the file out of fear of the unknown we declined to pursue her.

I still couldn’t forget her so I started looking at actual costs of wheel chairs and what insurance coverage we had. I started talking a a friend who adopted an 11 year old girl in a wheel chair about their experience.  I was still hesitant, but it started to seem more and more doable. The one thing that was holding me back was her medical issues.  We have absolutely zero experience with spina bifida or club foot.  A few nights later I was praying, and I was suddenly reminded of that woman who jokingly told me that we’d be back.  She and her husband were adopting two girls, and the younger one was blind. God put that child squarely in the middle of their hearts, but they were hesitant as they knew nothing about blindness. That family, knowing that God doesn’t ask for what he isn’t going to provide for, stepped out in faith and adopted that little girl anyway.  When they traveled to China their group included us, who knows a WHOLE LOT about blindness, and another family who the father was completely blind. What????

It was at that moment that I knew she was our child, and that we just couldn’t leave her in China one more minute. We contacted the agency her file was with, and immediately started working towards bringing her home. The next day I got a message from a fellow adoptive mom on Facebook who first started talking to me about adopting a 5 year old boy with vision issues. Come to find out last year she adopted two older girls who not only have the same medical issues our daughter has, but are from the same Social Welfare Institute.  She was able to answer all our questions, and calm our fears that this would be too difficult for us to take on.  Do you know how many orphans there are in China? How many Social Welfare Institutes?  How big the odds are that our two families would even cross paths, mush less connect on Facebook both loving older girls with Spina Bifida, and neither of us having a clue that the other had said yes to that kind of child??? If that is not a God thing I don’t know what is.

So here we are. I said we wouldn’t be back, and we will. I said I would’t adopt an older chld, and we are. I said we’d not consider a child with a special need involdving ongoing medical care like spina bifida or club foot, and we are.  AND, our hearts could not be more excited to do so.  As for the other daughter, that is still in the works. We aren’t sure if we will bring two girls home at one or make two trips to China. I guess we will have to wait and see.  God’s plans are soooooo much bigger than ours.