Tuesday, August 31, 2010

I Can't Sleep

Dear Blog,

On most days we have a very carefree, low-maintenance relationship. You require nothing of me, and quite often I reward you with just that. Most days I'm completely content with this arrangement, but tonight I can't sleep. Tonight I have a million thoughts going through my head, and the fears that I often hide behind a confident smile and a positive attitude, are starting to surface. So tonight you are more than my little corner of happy thoughts and pictures. Tonight you'll be my journal, my therapist, my place to vent and work through all the things I'm feeling at this moment.

Frustrated. Let's start there. Maddie is now 14 months old, and she is still not crawling. I don't usually talk about this stuff. I don't write about it, and I don't share it unless I'm asked. But lately I'm asked all the time. The older she gets the more questions I'm fielding. "Is she walking yet?" No. "Oh, so she's just crawling." No. And quite honestly, the questions don't bother me, so much as hearing myself answer them. It's like a daily reminder that things aren't working out quite like I'd hoped. I always knew walking would be delayed, and that my definition of walking might need revisions, but I'd always assumed she'd be crawling by now. Then there's the nursery dilemma. Do we put her with the infants because they aren't mobile, or the 1-yr. olds because they are her peers? This is an ongoing issue at church and the gym daycare...neither of which Maddie will tolerate for more than 15 minutes before I have to get her out. The only comfort I can take is in knowing that I actually am doing everything I can for her. I work with her everyday, on her tummy...and she's so close. But she's been so close for months now, and I'm just feeling frustrated. I feel like I need something to give me a second wind...some accomplishment to let me know that it's working. We had an OT evaluation last week. I was really hoping to find out if there was anything the OT could offer to help with our delay in crawling, as well as work out some feeding issues. It was super disappointing. Which brings me to my next feeling...

Angry. Why is it that some kids are able to have 5 different specialists, aquatic therapy, hippatherapy, and sensory integration...and I can't even get an OT to recommend sessions for us...at all. None. nada. So we continue with PT once a week, and I'm left feeling like we should be doing more...but helpless, because we can't. This OT is definitely spread too thin, and while I can appreciate the laws of supply and demand, when it comes to services my child may benefit from, I'm less understanding. This OT didn't buy into any of the sensory integration studies that I've been reading about. She wrote it off as hocus-pocus that hasn't really proven effective. I've got at least 4 Moms that beg to differ. Their crawling kinks were resolved shortly after this therapy, and they swear by it. So why wouldn't this OT give it a second thought? My guess is it's not her comfort zone...so where does that leave me? Well, angry I guess...at least tonight.

Scared. Of what? It's hard to say...The unknown is always scary, but for me, sometimes the known can be scary too. See I've been following a few kids that are pretty much SB rockstars, and I want so badly for their story to be our story. The problem is when I tell our PT about them, their SB level, and how they function...the look on her face is a mix of incredulity, amazement, and utter disbelief. It makes me feel that it doesn't leave much room for the possibility that our story may go so well. I want her to reaffirm my belief that this is possible. I think she's worried that I'm setting the bar too high. Lately I've been asking her some pretty tough questions about Maddie's capabilities thus far, and what it means for her future...I know there's no easy answers. I want her to say that it's completely possible that Maddie will walk unassisted, given what she's shown us so far...She tells me to take it one thing at a time, and we'll have to just wait and see what she can do. I know she's right...but I'm a control-freak by nature, and this "wait and see" goes against every single fiber of my being. I just want to know.

And let me just say, I know how sorry ths is all sounding...so Please forgive me. I know there are others much worse off than Maddie, and I am so very grateful for everything...I'm just having a moment of weakness, and I feel the need to get it off my chest. I'm sure I'll be back to rainbows and unicorns in no time...but for tonight, I can't sleep.


  1. Hey sweetie,

    So sorry you can't sleep tonight - me either :-( It's hard when your mind is so cluttered with worries and frustrations and ideas.....You are more than entitled to feel the way you do. It's natural with all we have going on each day. It's funny and I think that I should share that we too are following many of the same SB Rockstars :-) but I think it's important for you to know that we include Maddie in that group. I am ALWAYS telling our PT how awesome she is, how well she stands, how well she sits, how strong she is and how cute she is! I am so envious of the treadmill exercises you guys do!

    All the walking questions are starting to really get old over here too. I'm getting a bit better about answering them without a long explanation but it does hurt my heart a bit.

    Know that you are not alone in this and that I am praying that Maddie will start crawling forward soon to give you both that second wind you need.

    Sending lots of hugs to you from CA.

    Nicole & Annabelle

  2. It doesn't sound sorry, it sounds honest. I appreciate your honesty, so I know its ok to feel those emotions too. Maddie is an awesome little girl no matter when she crawls or walks...but that doesn't ease you frustration, anger or fear. I have nothing for that, but wanted to say thank you for sharing your honest feelings. Those help the rest of us too.

  3. It's ok to not feel like rainbows and unicorns every day. I don't know what Maddie will be able to do but I will tell you that Caleb was 3 1/2 before he could crawl on hands and knees (he just belly crawled before that). I had truly given up that he would ever be able to crawl on his hands and knees and then he just started doing it. Would you believe the kid was 15 months old before he could even sit up! I used to cry and cry over the fact that I had a one year old that couldn't even sit up. He is 5 years old now and walks amazingly well with AFO's and his walker. He has exceeded my expectations and the expectations of many a therapist and doctor. Therapists often think they know everything and that they can predict Maddie's future, but the truth is that they have no clue what she is going to be capable of.

  4. Thank you so much for posting these emotions. Although at 2 months old, Beckett seems like that SB "rock star" you talked about, I am well aware that at any time we may face some ugly situations.

    Praying for Miss Maddie and her continued strength. Hopefully just by you posting this, she'll start crawling in no time. Prayer is an amazing thing!

    Hang in there and don't feel bad at all...those raw emotions have to get out somehow!! What better place to do it and then have all these encouraging comments!?!?!


  5. Oh Selina...I couldn't sleep last night either. Thank you so much for sharing your feelings with us all. We ALL have felt (or are feeling) the same exact way. Luckily, we have each other. We have this family who truly gets it and can understand where we are coming from. It is so scary to think about the future and the "what ifs" or the "what if NOTS" It can all be so overwhelming. Just know that we pray for all of our SB families everyday! Much love to you and your family!!

  6. I'm so sorry it was one of those long nights. :( Like our friends said we ALL have them and I'm so thankful for the open, honest communication we all have - I know it helps me so much. Over the weekend I was asked at least 5 times "so is he walking" from random people (including a stranger a chic-fil-a) and one little boy who just adores Jet but has no idea of his diagnosis - who would?! So I had to politely answer "not yet" to confused faces and here the sweet little boy say "oh...my cousin is younger than him and he's walking." Oh my - it wasn't as tough to hear coming from an innocent little boy but it was still a reminder that Jet isn't where he would be "sb-less". But I am so thankful for what he CAN do and I know you feel the same for Maddie. It's not possible to stay positive all the time - but you do a pretty great job of it. :)

  7. I thank you too for posting. Sometimes when we read blogs and follow others, we don't get that middle ground. Posting and blogging isn't always about the good things and showing off (it is alot) but it is also for this, showing that the bad times are there for everyone as well. So Thank You!!
    Good thoughts and prayers are sent your way.

    We are just starting to get the 'is he close to walking yet?' questions, but at 9 months I can still say no and not get those second looks. But they are starting - not something I'm looking forward to.
    You are looking out for Maddie, believing in what she can accomplish. YOU are doing a GREAT job, Maddie just has her own timeline about when she wants to get things done. She looks very happy about it!

  8. I am learning that along with the good and the bad, you also have to talk about the ugly. Just think, years from now when Maddie is walking and thriving you are going to look back on this very post and realize just how far she has come! You are her biggest advocate, her biggest cheerleader, and the one who holds the highest expectations for her-which is not a bad thing! She's going to achieve so much-all on her own time and at her own pace. As hard as it is, it's helpful to try and let go of those milestone timelines, because honestly they don't exist in the world of SB. That's why sometimes I wish we could all move into our own little town where no one would ask "are they walking yet" because everyone would just GET it. When I'm feeling down though, all I have to do is log on and I soon realize that I'm not the only one who has "those days". So thankful for my support system-which is you guys! Sending big hugs!

  9. Every one has said it so much better than I here but I too wanted to thank you for such an honest post. If you only talked rainbows and unicorns, then the rest of us would be thinking something is wrong with us when we are having one of those nights so like the others have said, I'm so thankful that we can all share the tough times along with the times we celebrate. Let me tell you something you already know: Maddie IS a rockstar and she'll amaze you with her rockstarness the next time you are simply not expecting it. She's amazing as are you as her mama and her number one advocate! sending hugs!!!

  10. "See I've been following a few kids that are pretty much SB rockstars, and I want so badly for their story to be our story. The problem is when I tell our PT about them, their SB level, and how they function...the look on her face is a mix of incredulity, amazement, and utter disbelief. It makes me feel that it doesn't leave much room for the possibility that our story may go so well. I want her to reaffirm my belief that this is possible. I think she's worried that I'm setting the bar too high." YES YES YES.I have had those thoughts FOR SURE. Pretty much exactly. Hang in there, Selina.


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