Denial can be a beautiful thing. You can choose to believe what you want to believe. But when the something you believe isn’t true, there is always going to be that undercurrent, those unsettling feelings, that quiet voice in your mind that whispers the truth. In my experience, the whispers tend to get louder and can turn into screams. And then you are forced to confront the truth…the thing that you have known all along.
What am I talking about? I am talking about this thing that most parents of special needs kids do at one time or another. We tell ourselves that our child just needs more time to catch up or that the obvious differences between our child and their peers are not a good indicator of where our child is at because we don’t want to face the truth. Facing the truth is painful. Admitting that there is a problem is hard.
As parents, we want our kids’ lives to be the best they can be, for their futures to be limitless. Acknowledging that there will be struggle and hardship up ahead, more so than just for the average person is not something that is easy to do.
I have walked this road twice before. When we first admitted to ourselves that it was time to have Miss Optimism assessed for what we knew was a neurodevelopmental disorder, it was very hard to take those initial steps. Then, hearing her diagnosis (even though it was EXACTLY what we knew it would be) caused grieving. We grieved for the life we would have wished for her. We grieved knowing of the additional struggles she would face. We even grieved for what we would lose.
When we first realized that Einstein had Aspergers, we grieved again. One thing that made his diagnosis easier is that that time, we didn’t have to wrestled with whether or not we wanted him assessed and “labelled”, something we had wrestled with for hours in regards to Miss Optimism. We had been through that part once before and knew that we wanted to follow through with the assessments. But admitting that our child would possibly be ridiculed and made to feel different just broke my heart as a mother.
You would think that by the third time, I would just be able to move forward and get on with things, but I have had the hardest time this time. I went through a period of “why me?”. I questioned whether God knew what He was doing when He placed another special needs child with us. Did He not know that this would be more than I could handle?! And then that questioning led to some peace. I know that He knows that I can handle this. I am not yet in a place where I believe it yet, but I know that I am just going to have to trust in Him for now. And for now, that is enough.
So we stand here again. I spent a long time on that lonely road of denial. I thought that surely having two special needs kiddos meant that I could not have another! Surely I was entitled to special consideration! It was excruciatingly painful to have to admit that it was not only possible that we had three special needs kids, but it was fact.
It took courage and a lot of prayer for me to first pick up the phone and start phoning around about getting assessments done for Dancing Queen. We had the first assessment on Monday. The result? Severe speech delay in seven of the eight categories they tested and possible auditory problems. One diagnosis down, two or three more to go. We suspect that we know what all the results will be. We suspect we know the labels that will be written about her on paper, though we know from experience now that those labels need not define her.
And even though this first diagnosis of a severe speech delay is a small one, I did cry to see it in black and white. I will probably shed a few tears when our next suspicions are confirmed as well. I’d like to say that because I’ve walked this road two other times, that I know that things will get better, but I’m still in that painful stage. I think about the appointments that are in the near future: speech therapy for her and for Granola Girl (did I forget to mention that Granola Girl was diagnosed with a moderate speech delay on Monday?!) once or twice a week each, one to two appointments a week for Miss Optimism’s lungs, one to two therapy appointments a week for Dancing Queen, further assessments, and the usual dental, doctor, etc. for all the kids and it just feels too overwhelming.
Right now, I’m in a bit of a feeling-sorry-for-myself phase. I wish that I could stay in bed, curled up under the covers all day and have a good cry, but I have a daughter who is struggling to breathe and another who is confronting past trauma and severely delayed and a son working on healthy attachment and another going through some teenage issues and three more kids who need me too in their own ways and so I get up every morning and I put one foot in front of the other and remind myself to be thankful for each one of them…and I am.
Oh Sharla….I wished I lived closer…I have been enjoying my wine these past two days as we have finally went to a therapist and another of our kids has been diagnosed…..its not 100% yet but its what my feeling all these years have been and its hard…two kids out of four with special needs….I cried many tears asking the same things to the Lord about my abilities and why did I chose to have so many kids???? BUT I know this fact…that the LORD has an amazing plan for our futures its a promise to our children and too us too…our children are a blessing from the LORD a gift thats greater than anything….that he has a purpose for everything and that we(that means you guys and R and I) were hand picked to be these kids parents to love them and snuggle them no matter the struggles no matter how hard it gets…..
This is the promises of the LORD but like you I am in a period of self pity and a glass of wine is bringing me the comfort for now….. xoxox Big hugs and love to you and Mark…You are amazing parents and a testimony of our Lords love to your children and to the rest of the world around you xoxoxo
Sharla, I’m so sorry that it’s been so difficult. I know I have been struggling with seeing J’s struggles get more real and difficult as he gets older and the differences get wider between he and his peers. I guess I “knew” that he had Asperger’s but I didn’t really KNOW what that meant. It’s still being revealed to me and it’s hard. Then I think of H and how she probably will have some serious delays and my heart breaks. Most days I live in denial…it’s a nice place to live at times. Then reality kicks me in the stomach and I realize just how much this is going to impact and IS impacting my dear sweet ones lives. Hugs to you sweetie. YOu are doing a great job even when you think you are not. We should REALLY meet soon and have a chat…but I know between the two of us that would take a miracle!! 🙂 Schedules… Blah.
We need to be able to have a long chat. Maybe next time you have an appointment in town, you can plan for some extra time and come here and the kids can run around the yard together while you and I drink tea and visit for hours.
I can’t even imagine how overwhelmed you feel right now! I am up for a pity party when you are… I’ll bring the chocolate as I saw you already had lots there for “tea-tea” 😉 Love you – and I know you hate it when people say this, but you really are quite amazing. Even when you don’t think you are. I heard the song “He Said” by Group 1 Crew on the radio the other day and I thought of you.
I had never heard that song before but looked it up and listened to it after I read this. It seems you always know just what to say! I am SOOOO up for a pity party with tea-tea and chocolate!
I do understand the path you are on. We are praying for you as you find the answers to your dd’s issues. I went through a grieving process last year when we found out Little Red Ridinghood has vision problems. Now, her dance teachers want her refered to a physical therapist for weak ankles and a turned in foot. It is small issues, but on top of her three very special needs siblings ~ It is a lot. Praying! You are so helpful to so many with your honesty.
Blessings, Dawn
I am praying for you this morning. God is big enough to hold you in your moment of self-pity (exhaustion!), you know. 🙂 And I say moment because I know that’s all you have time for–just a moment, and then you’ll accept the extra grace God bestows on you and carry on. My heart is full for you.
I’m so glad that God is big enough. He is sure showing me that lately!
Sharla, thanks for sharing today. I know it must be so overwhelming for you right now to make sure your kids have the best care and opportunities during these crucial growing years. I’m so thankful, though, that they have you as their advocate and supporter. By doing so you touch so many more lives than you can imagine. 🙂
Thank you Dawn for the encouragement!
You are an amazing parent!!!! Never think otherwise. All any of us can do is one foot in front of the other. One of my favorite quotes has always been ‘God never gives you more than you can handle’. I always said then he must think a awful lot of me. Lol. However about a week or so ago I read on fb another version to that quote that I like even better. ‘God always gives us more than we can handle so we turn to lean on Him to help us get through’. Sometimes we walk beside Him and sometimes we are carried. Through Him you can do this Sharla!! As always I will keep you in my prayers.
The funny thing when when my oldest was diagnosed with ADD I was actually kind of happy. Cause then it made sense. I wasn’t doing it wrong just wrong for him.
Thanks Sherri…I have laughed before about wishing God didn’t think so much of my abilities! That version of the quote you give makes a lot of sense to me actually. I am having to rely on God like never before lately.
Aw, Sharla. I’m sorry to hear this. Praying for you.
Praying for you Sharla!
Thanks Andrea…prayers are appreciated and felt!
Have been and will be praying for you, girl. Was it Eliza eth Elliot who said “just do the next thing”…?? let me know if there is anything practical I can do to help, I am happy to drive in with DVDs, food, whatever..
Sending you a hug – I am praying you KNOW that you are NOT along – there are so many woman/people surrouding you and supporting you. It’s support you need and I pray that God continues to shower you and surround you with supporing people be it emotionally, spiritually and practically. This too shall pass – such a cliche, but one that has helped me through some really painful and overwhelming times. I pray that through it all, God gives you HUGE wisdome and HUGE energy – renewed like an eagles.
Thanks Tracy. I can feel the support right now and it helps get through the rough days.