*this post was written a few days ago and we have prayed over whether to share or not…. We are sharing.
No clue where to start. So so very much has been bouncing around in my head… Before I get too far in, this is Kathleen writing.
We got through April which is autism awareness month. You know when people who care and may love our kids make a big deal about autism awareness or share a post or whatever, but they don’t really get what it is like May 1, when all the hoo haw is done… They don’t get what living this life 24/7/365 is really like. The good moments are so exciting and I know personally I try to post those moments! But it has gotten harder to get any support or encouragement when things hit the fan. ( Or kick the wall) Just when we feel like we have made such progress with one kid, another kids behaviors reveal we have way more intense work to do. And I am not giving up here. But I am waving my white flag. Ok, not really waving it, I am too exhausted to do that. I am kinda propping it up while I duck my head to cover the tears and the look of complete bone crushing exhaustion….
Wait wait, people may say, didn’t you say Isaac is sleeping better? Yes, as a letter of fact, right now he is.. for how long I never know and summer and breaks are ahead and the night wakings and schedule flops return. But in this moment while he is sleeping better, why am I not well rested and refreshed? Seriously??? Really?? Do you have any clue what it is like in my home for me? No, I am not seeking pity or a pat on the back or anything. Just bearing my heart… After years of intense care providing for multiple kids with special needs, many many health issues have been poking up this past year for me.
I am struggling to regulate my blood sugar, stress plays a role in my meal schedule and my blood sugar readings. My blood pressure… It had been low, like really low was my normal. Then gradually went up. Low grade meds for a bit then in the past few months, meds have been doubled once, then doubled again… And I still get high readings. The living in constant stress no matter how hard I try to breathe or choose to calm myself. Much is demanded of me and sometimes, my telling them to take a deep breath and helping them walk through calming techniques is the only way I can actually apply what I know, and outwardly things look calmer for me but inwardly, I know my stomach is in knots and my heart is racing and pounding in my ears. And anxiety for what might happen next, all the while mentally thanking God for getting me through what I just walked through two seconds ago….
Much is demanded of me. Didn’t I choose this life? Parts of it! I walked into my marriage praying God would give me children. Because from my teenage years, that was what I felt God was calling me to… To motherhood. We didn’t plan or expect the bumps and detours we would face. 16 years ago after I delivered Isaac, I recall at about 6 weeks, how horrible I felt, I was facing my worst stretch of post partum depression ever. And nursing Isaac and getting him to sleep was a real challenge. A very dear friend came along side and we sat there crying and nursing our babies while our other children played in another room.. I recall from birth that something was different… I have no clue why Isaac has autism. I know that God allowed it and He is walking with me, many times carrying me as I am too weary to walk.
May 17, 2007…. We heard the words we already knew were true. “Isaac has autism”. Never did I think I would later have 3 children diagnosed with autism. Several with ADHD. Several undiagnosed with ADHD. One with a severe mood disorder. Never did I think when we found out we were expecting our youngest how our world as we knew it would be turned upside down so drastically…. The phrase “the new normal” doesn’t fly with me. I am not sure I ever really knew what normal was!!!! ( Feel free to take that however you’d like!!) But my daily life was so different from my friends, my family, my husband’s family…. My church friends…. I felt so alone…I never could have predicted what “in sickness and in health” would look like and of course mental health issues are looked down upon in many a church. Depression was declared sinful because you just didn’t have enough faith… And how can you be so down if you truly believe in all Jesus has done for you??? Well, my reality is daily, moment by moment walking with Jesus and still feelings, ups and downs of emotion and stress. And depression. My post partum depression was treated as that until a few months after our youngest was born. I hit a crossroads. I was trying to care for my husband who was in a very very dark place, after the armed robbery that left him physically fine, but left him otherwise, not himself. I never knew that one could have PTSD for anything other than war. But when nightmares and day terrors/ panic attacks rage on, in the midst of crying out to Jesus. Fighting to get my husband the help he needed while he was terrified to leave the house was beyond difficult. All the while caring for the kids. Most of our kids do not fully grasp why dad can’t work, why sometimes dad has to leave the room because it is just too noisy and overwhelming. Or why dad doesn’t feel comfortable playing catch outside… ( Thanks to the former company he worked for having him followed and spied on….) So, caring and loving my crew takes a special person. I had no idea that my dream of motherhood would look like this. No clue that I would go from us living comfortably financially and being able to budget well and take care of any debts and get food or clothes whenever we needed them to accepting any hand me downs… Finding food trucks and food pantries to make ends meet and being creative in the kitchen to make that not show for the kids…. And God has led many people to walk along side or those who say, here is money for this kid to go to camp… They say “We love you. We don’t feel we can help in another way but we can do this….”
God has used many people to walk into or pass through our lives to deliver many blessings. Many needs have been met in the most awesome of ways!! Oh the stories I could share of God’s perfect timing!!!
But in spite of God’s awesome provision and carrying us…. I am the one to juggle the menu and food shopping. We are faced with growing kids and a disability income that while it is a lot for many families for a family our size… It is very tight.
I never thought I would be in a situation like I am today. In two short years, we will be filing for guardianship of our Isaac. He has made so much progress but independent living is not in the books for him. There is just something so precious about that boy. So unique and while wired in a special way, he is just perfect the way he was created! God placed Isaac ( and his six amazing siblings) with Mark and me. God knew all that was going to happen to lead to this very moment in time. With therapies, doctor visits, counseling, and meltdowns and holes in the walls, with shoes with holes and no soles ( literally) with poor health and the need for me to make noticable changes to take care of myself so that I can take care of the people in my direct care. While I envisioned a table full of children, laughing and happiness flowing around my table. I am faced with meals where someone says something ( not even anything bad or hurtful) and someone else takes it wrong because that is how their brain is wired…. And my plans of a peaceful meal are turned into kids dropping in tears or throwing dishes or food or hurtful words and sometimes kicking or hitting walls…. Nothing like I planned. And as awesome as I am, I have yet to master calmly dealing with everyone at once in those moments!! ( Not really ever gonna happen!!) We work with whomever we can when we can and when they are hopefully most receptive to direction or redirection.
I never thought I would be reduced to gushing tears even while I try to breathe them away…. the weight of what we face, what I face daily is mindboggling. At times the comments below are encouraging “wow, I could never be as strong as you” or I” could never do what you do.”.. But at other times, it feels like a sucker punch. There are times I go running to Jesus telling him that I can’t do this and I dump it all at his feet…. Then some well intentioned person asks why I am not doing this or that, and that surely if I did it this way, it would work way better.
I am past the point of processing life in a timely manner and even with my best intentions at planning and preparing and budgeting or whatever…. Life still seems to pile up on me and I feel like I am crushed and suffocating under the weight of all that is demanded of me on a daily basis.
I have no great finale to this in mind. But as I listen to our Isaac giggling and squeal in delight to the Veggie Tales video is playing and rewinding and playing again…. And again…
I just want to say, I never ever know how to respond to “hey, how are you”? Because there is the simple answer of I’m fine… Or oh you know, tired…. But I struggle to be bouncy and overflowing with laughter and that mindset because so much of my life is focused on how to avoid the next meltdown and how to keep everyone safe, clothed, fed and most of all well loved.
Today my heart is aching. There is more on my heart than I could ever attempt to corral and throw into black on white….
Today I am simply being real in the moment …. I am struggling. There is no perfect answer. There is no “magic wand” to make it all perfect in someone else’s eyes…. My world and I my family…. We are who we are. I know for me….I am broken, seeking Jesus in every step that I take….