Thursday, March 10, 2011

The Ebb and Flow





Last week I was in a funk.  Just feeling down and not sure why.  Then I pinpointed it.

Lamp is 8 months old.  I remember when Sparkle Pants was 8 months old.  And it's definitely not the same.  Obviously with all kids the are going to be developmental differences, but realizing that sparkle pants could sit up, roll over, stand and even cruise around at this age has been a tough reminder lately just how much slower Lamp is progressing in these physical milestones.  She is not doing any of the above.  Additionally, she's also just a lot smaller than other kids her age.  I bought her a new outfit yesterday and it will be huge on her.  It's a size 3 months.  All of this is totally OK and to be expected...except I sorta didn't expect it.  In fact I think I was in denial.  

Some parents of children with limb differences that I've talked to have told me how their kids still hit all their milestones around the same time as a typical child.  So I think I sorta expected the same...but then I remember that most of these kids I'm thinking of only have 2 limbs affected, or if all 4 are affected it's much more minor.  At any rate, I was using these kids as my measuring stick for Lamp and I shouldn't have.  I'm not mad at myself or anything, I don't think it was some huge parental blunder, but it sorta set me up for disappointment.   And I shouldn't have had any expectations--for her sake and for mine--but somehow it was easier for me to have some expectations rather than none at all.  So it goes.  

Then last week we went to the museum with a few friends and I started sharing my thoughts and feelings with one of my friends.  She went on to tell me how her 3rd child, who does not have any special needs, was really delayed on almost every milestone.  She said he rolled once at 6 months and then not again until 9 months.  Similar things with sitting, crawling and walking.  It's funny how even though it doesn't change anything for Lamp it helped me feel a lot better.  It was a conversation I really needed to have that day.  I needed to be reminded that all kids do things at their own pace and their own time.  Ever since then I've been in a better place.  Regardless, I know that we'll have our ups and downs when it comes to Lamps condition, that's just how it is.      

Although I've been feeling better personally, it seems that Lamp has had a lot less patience lately.  She's a lot more fussy lately and she's either teething or bored (or both) Regardless of the fact that she doesn't know any different than the limbs she has I think it's still very frustrating for her to not be able to get things she know she wants.  I remember Sparkle Pants getting frustrated when she couldn't do something she want to do.  So I've been trying to come up with new ways for her to play and to have some new sensory experiences.  The first thing was purchasing a bowl that comes with a suction cup on the bottom.  Then I filled the bowl with a couple different things for her to play with--bubbles and beans.  She really liked it.  (The picture above).  Even little things like that, finding new ways for her to play, help me stay positive.  Also on the positive side, she's really, really close to sitting on her own.  And really close to rolling over.  And finally--I finally feel safe saying this outloud--the night feedings with the g-tube and pump have made a world of difference.  Really.  After all the trouble this g-tube thing has caused, it's so great to see the payoff.  She sleeps for hours and hours on end and it's wonderful.    

So that's the report.  The ups and downs, the ebb and flow...  
Bottom line, we're doing well.    

27 comments:

  1. I have a friend whose son just took his first steps and he is over 18 months old. No physical special needs. My boys were late in everything... Max didn't really talk until he was 3! Oliver is much more verbal, but just know that every child has their unique talents. Max made these incredible connections and comprehended things so much better at a young age than Oliver ever did although Oliver was talking around 2. He still doesn't comprehend at age 3 and a half nearly what Max did at 2. So different.

    How is lamp mentally? I think it will be very hard to compare Lamp to any physical milestones. It looks like you are doing fun exploration things with her! You are a wonderful mom, Miggs.

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  2. I'm so glad you share your experiences and your outlook. I think your blog helps a lot of people. I am always so touched by your stories. Do you mind if I link this post to my blog later today? You are an inspiration!

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  3. Shoot! I just signed in with my ward account. Sorry!

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  4. I love your creativity in coming up with something new for her to do. When that happens with me, I feel so triumphant ("I am a good mom after all.") I tend to be positive, but then comes the inevitable funk. And then comes the inevitable inspiration and creativity and hope. This was an uplifting post for me to read this morning!

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  5. when she hits those milestones (i call them marathon stones), it will be cause for a full blown party. I know you love to party, so look forward to that.

    as always, i know our situations are different. but i know when lamp starts to make serious progress, you will beam with more pride than you ever knew you could beam. Piper Jane didn't sit up on her own until she was a year and a half old. When she did, she was wabbley but we cheered for her and high fived everything in the room.

    i'm proud of you guys.

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  6. My eldest son didn't walk until he was 14 months old; we were quite concerned. He was in occupational and speech therapy until high school, when he tired of it. He is now in his second year of medical school at Columbia U in NYC. I always told him that God gave him a different kind of gift than the jocks who tormented him...his intelligence. It's so hard to watch our kids struggle, but keep the faith that Lamp will find her own special gift!

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  7. Lamp looks so HAPPY! And engaged in these photos, especially! Good job Mama. I agree, our lives are filled with "Ebb and Flow" moments...and then you'll wake up one day and she'll be 7 years old and reading you Scripture Stories and Junie B. Jones books!! :)

    She's a doll!

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  8. Oh baby Lamp, she is so sweet. I think it is so amazing that she doesn't know any different, and is just happy to be here on earth with your special little family.

    Good job, mom, for coming up with creative ways to stimulate her. She is a lucky girl to have you. :)

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  9. I feel so guilty because I indulge in your blog every single day and never leave a comment. Well, here I am! You are amazing and Lampy is amazing. You were most definitely made for each other - Awesomeness x's 2! She has the most beautiful face. Way to go on being so creative with new ways to play.

    Monkey (blog name for my baby) was not sleeping well at all at nights for quite a while and I would feel that "someone understood" when I read your blog. I'm not happy that you were going through what you were going through, but it is comforting to know that someone else understands. Well, suddenly, in past week, she's started to improve.....just like Lamp! Yay for us!

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  10. Even though it doesn't always 'instantly solve' anything, I always think it's nice to finally pinpoint whatever it is that is sending me into a funk.

    Congrats on the g-tube working! Getting sleep is a MAJOR milestone!

    I love the sensory experiences! What a great idea. And as always, Lamp is the cutest little thing I've seen this morning!

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  11. my daughter had lots of developmental delays and we didn't know truly what until she was 2.5. and, although it's a very different situation than yours, i heard "she'll just do it on her own time" more times than i want to count. it's partly true, but at the same time, i don't think you should feel bad for having expectations. just because some kids are delayed or have/will have special needs, doesn't mean they shouldn't be pushed and encouraged to be the best version of themselves they can be. had we not pushed our daughter to crawl, cruise and walk, she never would have...her disorder kicked in at 2.5 and she had all sorts of regressions that are now permanent. i'll be forever grateful that we had expectations and pushed ourselves and her to accomplish what we knew she could.

    p.s. i'm not a completely random stalker. i was friends with you husband in high school. :)

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  12. I love your creative ideas for giving Lamp some extra sensory experiences (the bowl, beans, etc.). It's interesting to think that your incredible creativity is being put to a whole new use.

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  13. I have your blog in my google reader and my "blog time" is every afternoon while my one year old is sleeping. My 3 year old often reads with me. Today as we looked at the pictures of your sweet little girl my son said "Is that me?". He did not see any difference between himself and her. :)

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  14. I know your thoughts so well. My daughter is 2 and still doesn't sit up, crawl or talk. I compare even when I don't know I'm doing it. I'd just like to know what it's like to know what hitting real milestones is like. Like Reagan, when my daughter does roll over or scooch or even try to form a word we celebrate and clap and probably look pretty goofy.
    I'm not sure if you've ever read the story, "Welcome to Holland" but one particularly hard day after comparing my daughter to every other child in the nursery, a friend sent this to me and it hit home and grabbed on to me. So every time I feel a little sad I remind myself by saying the title of the story, "Welcome to Holland" and it makes me smile.
    Read it one time, it's a lovely little story ...
    http://www.our-kids.org/Archives/Holland.html

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  15. I love both of the pictures you posted of Lamp. Her expressions are so adorable and she is just the cutest little baby ever.

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  16. Thanks everyone. I don't have time to respond to everyones comments, but know that I really all the positive, supportive comments.

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  17. My mission companion knew you from NYC and told me to read your blog. She said it might help me feel not so alone in everything we've been facing this last year. My daugter is 1 and has Kabuki syndrome, a really rare genetic disorder. It's affected her heart, brain, kidneys, she's developmentally delayed in all areas and the Dr. told me that she will probably never be able to live independently. We've been trying to adjust, let go of many of the hopes we had for her future. Even though our daughters have totally different difficulties, its made me feel so much better reading about Lamp. Thanks.

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  18. Whoops, that last comment was supposed to be under my name - Heidi - not my husbands account.

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  19. Can i just say that lamp is the cutest thing on the planet. Cause she is. You are doing an amazing job, and thank you for sharing everything you do. I think you are pretty incredible.

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  20. Anonymous2:03 AM

    She is just beautiful.

    My daughter never crawled. My son walked 6 months later than my daughter did. They are all unique and so very special.

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  21. Linda P.6:29 AM

    Look at that sweet smile on Lamp's face! How great that you were so creative and gave her some new things to explore! I do understand funks. Just when I think I am adjusted to the differences of my special needs young adult son, something will hit me hard. Then I pray, I may cry, I may think "why does this have to happen??" Then the funk gradually leaves, and I feel OK once again about the very different "normal" that we parents of special needs kids experience!

    If you end up moving to Texas, let me highly recommend Texas Scottish Rite Hospital for Children in Dallas. It would be a WONDERFUL resource for you and sweet Lamp. They do not charge, and I know prostheses are one of their services. My daughter was born with some extra skin between her fingers, and she had surgery there to remove it several year ago. I believe you have to get a reference from a doctor to be seen, but that shouldn't be difficult. Anyway, check out their web site!

    Hugs to you. Praying that you are feeling "unfunked" soon. : )

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  22. adorable pics and fab sensory ideas. so glad you had that conversation with your friends the other day. great post :)

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  23. Can I add to the love?? Lamp is adorable, Amy! And you are amazing! I love your approach and the great job you do of sharing it with the rest of us...so that we can learn from you! You are so right about babies and working on their own time table. I know that your desire comes from such a good place as it demonstrates that all you want is the best for Lamp. You want her to be happy. I can't wait to meet her one of these days!

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  24. Anonymous1:26 PM

    Lamp is such a little pumpkin!

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  26. I just found your blog today via your awesome diy chevron rug, then I saw the pictures of your beautiful little girl and had to keep reading! My son is 3.5 and has autism, and has a few severe delays- mainly speech and cognitive delays associated with him not speaking, so I know how hard it is to deal with expectations! Yesterday my son said momma for the first time, except it wasn't really to me, he was playing and just randomly started saying it. I've been hoping to hear that word and was so excited- then I got so disapointed because I probably won't hear it again for a while, and I dont know if he knows what it means. So instead of feeling disapointed i'm just trying to focus on the fact that he made a new sound- you have to relish in the small victories and any progress is good progress! Thank you for sharing, and sorry for rambling on!

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  27. Anonymous7:48 PM

    Baby toes are so very cute. I know, off topic, but those little feet were just so charming.

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