If you do not have children with special needs, there are likely some things you never thought of. While this will be my attempt here to share a few of these things with you, know that I am 100% grateful to God for calling us to adopt these kids and for the faithfulness He has given us to do it. There is NOT a single fiber of my being that regrets it or wishes they were any different; that is not the point of this post. The point is to share with you what you may not know. The point is also to say "I get it too" to those who know very well what I am sharing.
Today I posted in a private group for families who have adopted multiple children with special needs. I'm in a bit of a funk today, probably just hormonal, and I really needed to share. I could not be more grateful about the HUGE response I received from other families that totally "get it" and live it too. I so much wish we had friends nearby living a similar calling.
Many families with multiple special needs children have many areas of life we must "do" differently. For us, one thing is we need to leave almost immediately after church...we can't stay and socialize, though we would like to. With Marni being so active, so curious, so easily overstimulated and so incredibly fast, it is very difficult to keep her calm and entertained after service lets out. No, she's not always the tornado you may have witnessed. No, we don't leave because we are unsocial either. Yes, we WANT greatly to fellowship with our church family, but staying is much too stressful. Marni is much better in a calmer, familiar atmosphere. Even strapped into her car seat in our van is comforting to her. Most often, she will calm down immediately upon having been strapped in.
Going out to lunch after service is not feasible either. Aside from the tremendous cost of feeding our large family, Marni would also likely find it difficult to "chill" at a restaurant after the excitement of church, then being out with a large group of people (anyone more than just us, basically), and it's nap time. A great combination for failure...so we skip out.
Having a child in a wheelchair (our sweet Nadia) and a curious, lightning speed runner (precious Marni), also means very limited activities outside our home that are conducive to both children's needs:
Monkey Joes - terrible for Nadia's legs and climbing requires teen or adult assistance.
Chucky Cheese - in addition to being somewhere I can't stand to be and cringe at the idea of wasting my money there, it is much too overstimulating for Marni and we'd guarantee ourselves a meltdown and lots of difficult behavior.
The park - Ha! Marni would run off or climb as high as she can although she has poor balance and inadequate judgement (dangerous!). Nadia can't do much and requires constant physical assistance...there'd be no relaxing and conversation, just lots of hard work.
Most anyone else's house - New territory for Marni to explore and boy will she explore. A young childproofed home is not safe enough. Marni may explore like a curious toddler but much more clever...great "problem solving skills" (if she wants to get to it, she will figure out how). She is also much taller and therefore can reach higher. She can open doors and run out. If she wants a drink, she will grab every glass that is in reach.
Nadia needs clean floors to crawl on. Most times a wheelchair will not satisfy her need to get around in a house and often there just isn't enough room. When other children run out the door to play outside, she can't go...not unassisted anyway, and what will she do when she gets there....surely not just sit and watch like she did at the orphanage. Again, it is incredibly stressful and no adult conversation will get very far.
Because of this, we find ourselves creating a small world for ourselves and our younger children. We stay home. That's not to say we don't go to the zoo, or the movies, or shopping or whatever but for the most part home is best. Our home is Marni-proofed. Our home is safe for both of our little girls. We have very few close friends that come to visit. We enjoy their company and love having company over; it is likely the only place we can really relax and enjoy fellowship with others.
What you may not realize, or may not have before reading this post, is that we would love to fellowship more with our friends and church family but are limited in how we can do that. We hesitate to invite people over that are not already close friends of ours because I make the assumption that most people prefer not to be around the liveliness that our family is. We live a distance from the church and assume that asking people to come over would be inconvenient for them.
Usually it does not get to me that our world is small, but today...today I'm really wishing that the whole world was just a little bit smaller so we had some of those great large and special needs families nearby. How cool would it be to have friends close by that had a totally safe and fun environment for our kids and our home was the same for them. My conversations today proved that most of us live the same way. There wasn't anyone upset about it (except when families are not welcome over other families homes), just comes with the territory. Again, I'm okay with it...I just wish we knew more people okay with it that would like to visit our little world more often.
Having multiple kids with special needs truly is one of the greatest blessings I've ever have known, I really mean that. There is nothing that compares to loving a child, so wholly and completely despite their special needs...and probably even more because of how those special needs has helped them to become even more amazing people. Tucking them in at night. Knowing you are the one they love and trust most. Knowing them more intimately than anyone else. The love and patience that God has grown in our hearts is something that too few people know.
So for now, we are working towards making our little world (home) all those fun kid places right here. God will provide all we need to do that, leaning in to Him and trusting things will all come together through His perfect plan.
(Matthew 6:33) Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.