Erik Quinn: The Heart of a Family: Only God Knows Why

Saturday, September 08, 2007

Only God Knows Why



I have had volumes to say lately but apparently lacked the strength or the knowledge required to transform my thoughts into words on my computer screen. I will keep some of my thoughts private, as I just can't imagine letting the sunlight hit some of them at all.

In essence, my brain is in overdrive before our IFSP meeting Monday and the first day of preschool Tuesday. I was invited to attend a fundraiser at the stables where Erik receives hippotherapy by a friend I met courtesy of our kids' respective syndromes. I declined via e-mail, as I was feeling incredibly grouchy and the last thing I felt like doing was writing this admittedly wonderful facility another personal check. After she received my somewhat vague and probably uncharacteristic response, she called to check on me. As much as I didn't feel like talking to or seeing anyone, it was surprisingly good to hear her voice. I told her I couldn't quite put my finger on the sudden, week-long bout of clinical-strength depression I seemed to be experiencing. It was then that she admitted to me that there are times when she stops and wonders exactly what in the hell has happened and how she came to be where she is today with her child. We agreed that we both were formerly under the impression these kinds of genetic anomalies our children have simply didn't happen to those around us and that we were exempt from anything besides having a perfectly normal child with beautiful fine and gross motor skills and every single one of their genes. Before Erik, I had no idea a person could be missing genes! What ended up occurring certainly wasn't included in the play books when we were selecting our nursery themes or sipping pastel-tinted punch at our baby showers. Before I gave birth, I once told a friend that the worst thing that could happen was to bear a child who was mentally retarded, as I wasn't nearly strong enough to handle it. I stated that with smug confidence, as I knew it simply wouldn't happen to me, anyway.

I was wrong about a lot of things. It can happen. It happened to us.

Yeah, yeah, I know. We established the fact that much of what has occurred simply sucks long ago, but the way she put it into words really struck a chord in me. She is a positive, strong person who rarely complains. There are just moments when moms like us look up from the routines we have come to consider perfectly normal (Windexing playground grit off of our child's orthotics, covering tiny ears to protect them from upsetting noises other children don't seem to hear at all, administering medicine to control problems that usually occur in the elderly, pulling our child from the sunlight more readily than other children to prevent serious vitamin D and calcium issues, and singing songs over thunderclaps as our inconsolable kid sobs) to stop and say, "Hey! Just wait a cotton-pickin' minute!"

Just what in the hell DID happen? Am I really doing all of this? Is this a dream?

It just doesn't seem real sometimes. However, after a moment like this, reality eventually crashes in on me, and I am coming to the realization that this is forever. There will be no end to it all--and that's if I'm lucky. Pardon me while I learn to breathe again so I can survive the panic attack I seem to be experiencing.

Last week I was feeling especially sorry for myself and my child. I squeezed my eyes closed and let my brain marinate a bit in my blue soup of thoughts, even though I know that's a dangerous and crazy thing to do. When I did this, I saw something completely new. I pictured myself 20 years from now standing in front of a neat line of Tupperware containers on my counter, and I was filling each of them with hot, homemade food to place in Erik's freezer. I stopped my daydream long enough to wonder if he would know how to operate a microwave without burning himself. Would his teeth decay from a poor diet or his brain's inability to allow him to successfully brush both sides of the teeth in his mouth? Would he know how to fix himself a meal? If I was freezing him dinners, he might be living on his own quite successfully, but I would have the same work and the same worry ahead of me. Maybe even more of both!

What would be worse? Having to let him go or not being able to let him go?

I'm afraid of burning out. Of being so jaded I won't love my son the way he deserves to be loved.

Most of all, I'm afraid of never being able to rest. Of watching my friends' children leave home for shiny, new lives and careers as I assemble peanut butter and jelly sandwiches for my baby. I could hardly bear to think about it anymore, so I opened my eyes again.

The future is unknown for every mother, of course. There is no way to know at this point what Erik will be capable of doing or what his life will be like. It's not really up to me in the long run, although I help him when I can. I don't normally ruminate on these things constantly. In fact, I consider myself lucky I may have a mama's boy on my hands. He is a great companion, and we make each other smile. Lately I have needed to think, and my depression seems to be lifting as I sort things out. Perhaps part of what I am feeling is being afraid to let go next week--and of never being able to really let him go at the same time.

I have been wrong about a lot of things.

Even in the midst of my depression-generated daydream, my face was dry, and I looked happy and strong. There is no question that I will do what I need to do. I hardly know the woman in my daydream with my own face, but I hope that we meet up eventually and become one and the same.

I can handle this, and I will handle this. I guess all I can do at this point is let go of his hand and see what happens.

I have been wrong about a lot of things.

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11 Comments:

Blogger kathi said...

It's hard to comment. I don't want to belittle your feelings by saying that I understand, because there isn't anyway that I possibly could.
I see a lot of people my age (much older than you) with their fully grown Down's children with them, and I've wondered about what it must be like for them (the parents). I know there are times they've been so tired and yet...there isn't any option for them. I'd never heard of Williams before I met and fell in love with you and Erik. I read about you going through the things that I've wondered about. You have taught me how strong these parents have had to be, the emotions they've faced and the hardships they've been dealt. You've also taught me about the tremendous amount of love they've had for their children.
All I know is that Erik is so very blessed to have you. You teach him strength and courage and perseverance every single day and it shows in all his many accomplishments.

11:24 PM  
Blogger Katie said...

We all "knew" before our babies were born that genetic defects, mentally retarded children, "special needs kids" simply dont happen to us. They happen to the "other" mothers. We "knew" we couldnt handle such things. But it did. We did. We do. and we will.
I hate imagining the future - i was speaking to a friend the other day and she was talking about her daughter getting married, her son going off around the world and it occurred to me that one of my children may never experience these things, instead he may be with me at the wedding, just watching or at the airport waving goodbye to someone, himself never able to embark on such a journey. It makes me sad to think of these things, however sometimes i also think, hey, i have never been around the world and i still have fun, plenty of people are not married - they are still happy, and plenty of people in our community have special needs and they still live full and happy lives. We just have to do our best.
Your a great mum Nancy.
xxoo

5:04 AM  
Blogger Julie said...

Nancy you are not alone in your thoughts, I have thought some of the same things. I have no doubt we will always love our children. One of the first things that I thought of when we found out Noah had WS was that Scott and I may never be able to go on trips and enjoy our retirement years alone. I know that sounds selfish but I am being honest. I don't really think about that anymore, I know it will work itself out and what is meant to be will be. It is out of my hands and in God's. I do have a strong faith in God, but that does not stop me from worrying about the future. One of my friends from school just recently lost one of her best friends to cancer. She was 39 and had a baby the same age as Noah. The thoughts raced through my mind for days. I will admit it actually haunted me. People always say a child should not go before a parent and I totally agree. We have already lived through losing a child and that was very traumatic. Although I feel like I would die myself if anything happened to Noah or any of my children I worry what the future would hold for him without me here. It is almost as scary as me imagining my life without him here. I just have to keep my faith and pray knowing God has a plan. This is sometimes difficult.

I think you are doing a great job. This blog was put here for us to help each other and have a place to unload. Keep up the good work. You are in my prayers.

6:01 AM  
Blogger Rosemarie said...

Marinating in the reality of now can be helpful, but I would encourage you to keep that daydream alive and remember the possibility that Erik could very well be living on his own quite successfully in 20 years. That's my hope and prayer for you both!

I am so glad to hear that unexpected surprises to express your thoughts have collided with others in your situation. There is nothing like knowing you're not alone in a lifetime of the unknown with WS.

Peace Nancy, as you work it out, and once again prove yourself wrong. You're a fighter and making a success of your life, and Erik's!

6:07 AM  
Blogger Rosemarie said...

I'm not a true Kid Rock fan, but this song is wonderful and tells the human story. Why do we move forward in the face of trials, tribulation, or adversity?

For me the answer is clear, to prove to those who can't move that it can be done with the help of God. Victory is His middle name. Don't cha know?

PS As usual, I'm teary eyed. You don't know how your journey keeps blessing me!

6:39 AM  
Blogger All moments remembered said...

Oh Nancy, what do I say? I can't even begin to imagine what you must go through daily and what you will go through. I just want you to know my heart goes out to you and I am sending huge hugs your way!!! Your writings tell me you are incredibly strong! I believe there is a reason you have Erik! He needed you to be his mommy on this earth!! He is so lucky to have a mommy like you that is there for him. He found his way to you because he needed YOU!!! You are super and I have not even met you in person. I love reading what you write, you know how to touch someone deep inside! You make me think. I think any mom who is in the same shoes as you can really bennifit from reading your blog. You are so honest and real!!!
Again hugs to you and Erik!! I can't wait for us to have lunch with Heidi!!
Stacey

10:01 AM  
Blogger Kerry said...

Hey Nance~
How lucky we are that we have the internet to connect us all around the world. I can't imagine going through all of this with no one around me knowing what WS was. Heck, I am learning every day! It all makes me feel reassured that there's a world of people out there who understand what I am going through and some whom I can rely on who have already gone through it. And to have my core group out there whom I can turn to no matter what...

Thank you, Nancy, for being there when I have had days like you -- you may not even realize it. Sometimes I don't write, just read about the accomplishments and look at the adorable pics. FOr a real pick-me-up, I listen to Erik do his ABC's or what have you on your recorder!

I hope you feel strength in our numbers and feel assured that we all understand and ride this journey alongside you... love you:)

10:58 AM  
Blogger camille said...

Wow, that took my breath away. You have a gift for putting those feelings into writing. Thank you for that honesty.

I have definitely gone through those slumps as well, but I try not to dwell on them too long because I'm afraid of what will happen in my mind if I do. I try to keep reminding myself that I just don't know how he'll be in 20 years. Maybe there will be more possibilities by then. Maybe not. And if not, I'll take care of him. That's about as far into that futuristic picture as I can go at the moment.

I noticed your blog had been quiet the past several days and I wondered how you were doing. I should have sent you an email. Sorry. I hope you are feeling better now and want to hear all about preschool. You're one year ahead of me and I really appreciate all you do to help prepare me for what's coming.

5:39 PM  
Blogger Tara said...

Hey Nancy. Your blog hit home today. I took Payton to children's choir at my church this evening (I help teach it) and watching her with all the other children has put me down so much. I'd like to lock myself in my home for a week. I think all the time -man, I'm SO tired. Will I ever feel rested ever again? I think about retirement wondering if I'll ever be able to go on a trip with just my spouse. My future is just not what I envisioned. Thank you for your honesty. It's encouraging to me to know I'm not the only one who has these concerns.

7:46 PM  
Blogger Heather said...

I know what you mean. Call me in 20 years and we can chat about our boys and hold eachother up.... and set eachother straight in times like these. XOXOXOXO Heather

5:57 AM  
Blogger Every minute counts.... said...

I can relate to what you and the others have commented. I think about what the future holds all the time...way too much lately. I am scared to death of what it will be in 20 years but I am just as scared that it won't be there. Who would have ever thought? I think everyone feels like it could never happen to them...never say never huh?! It is hard to see friend's children younger than Abi and know that she struggles for what they take for granted. It breaks your heart. I don't think letting Abi go to school has been easy at all and she is my fourth one...I've learned to let go a couple of times...but I just have fought so hard to protect her that I have a hard time trusting anyone else.
Thanks again for being able to read my thoughts and put them into words.

Noel

2:13 PM  

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