If only I could make her wishes comes true

Yesterday morning I was cleaning out Allie’s backpack. I know, most mom’s are on the ball and clean out the backpack the night before to make sure there wasn’t homework. Me? I wait until 10 minutes before the bus comes. Innocently enough there was some St. Patrick’s paperwork. A piece of paper with a 4-leaf clover where Allie had to write four wishes.

1. To see Selena Gomez
2. For Boo to stop having special needs
3. To stop having bad teeth
4. I would love some nice horse books

Okay, wish #1 is probably out. I do not think Selena Gomez tours. But I will set a Ticketmaster alert!  For wish #3 I know this is due to her having a pallet expander put in her mouth last week. It has not been fun. And I can totally grant wish #4 in her Easter Basket next week.  But back to the wish that broke my heart. How do you explain to your child that their sister/brother will not be ‘cured’?

Allie seems to take Boo in stride, I thought. Out of everyone Allie seems to take Boo as she is, just her little sister.  Of course I had to ask. First I asked what Allie meant by special needs. In Allie’s mind, special needs meant that Boo takes longer to learn stuff, things are harder for her and she has to spend so much time in therapy.

Why can’t she just be normal?


I explained to Allie that Boo cannot be ‘cured’ (I know, MOM–with exaggerated eye roll) but that she improves with every therapy appointment.  That only a year ago Boo barely talked and now she has about 60 words and just started using 3-word sentences. That today she can jump, ask for a cracker and climb up and down the stairs.

But I have no life because of Boo!


Allie told me that if Boo wasn’t in so much therapy then maybe we could do girl scouts, gymnastics, play-dates. I didn’t want to shatter her innocence that it was my fault she wasn’t enrolled in any of that stuff. Team sports gives me nightmares. Have you seen Dance Moms? No way in hell am I going down that road. I will take 15 therapy appointments a week!

But this comment opened my eyes to what we are doing wrong with Allie. I thought that by having her attend Boo’s appointments she would have a better understanding and be able to work with Boo in a positive way. And she has, I have seen Allie tell Boo to use her words or how to make her use skills learned in OT. She can explain to her friends why Boo doesn’t understand or act like a typical 4YO. However, I did not realize that Allie is beginning to resent having to spend 2 hours a day after school at the therapy center. She wants to be home or with her friends or anywhere else. This is something, though, we can fix. We can have some one pick Allie up afterschool so she doesn’t have to attend every therapy appointment.

However, she is not going to be able to do team sports. I am not that accomodating!

I wish she was normal too
 
I told Allie that sometimes I wish Boo was normal, too. Think about how much simpler life would be if only Boo was a typical 4YO. If we didn’t have to worry so much, attend so many appointments (slight aside-think of how my paycheck would increase if I could actually work a full week!) and not have so many meltdowns. I completely get Allie wanting a normal baby sister that she could have typical relationship. Even if that meant hair pulling and screaming matches.
 
But wait, there are perks!
 
We started talking about some of the cool things Boo brings to us, just being who she is. By not being that typical 4YO, she isn’t in Allie’s room destroying her toys (or worse, playing with them). That Allie gets to do more things because Boo isn’t involved in activities (other than therapy–is that an activity?). That we have gotten to meet some really cool people and be involved in things like World Down Syndrome Day and the NSTAR Walk for Children’s Hospital.
 
Allie thought the biggest perk was being able to cut in line at Disney World. I kind of agreed.
 
 
I really wish that I hadn’t misplaced that parenting manual with all the answers to life’s questions.
 
 





 

16 thoughts on “If only I could make her wishes comes true

  1. Janine Huldie

    Oh Kerri, I am so with you on the sports and you know how I felt about soccer recently and both my girls don't have special needs. So on this part of your post, I will shake hands with you. As for the rest, just being a mother I am with you and wish there was a parenting manual with all the answers in them, too. Seriously, though I can't even imagine and am not going to try, but from all I read here in the past and today, too I think you are doing a wonderful job and just remember no one is perfect, but you my friend are truly the best mother and please don't ever forget that!! 🙂

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  2. Mariska

    Oh my… And that 10 minutes before the bus comes!
    I am not one for after school activities, either, and I can't blame my daughter with Down syndrome for that.
    But I see how little minds just find a 'reason' why things are the way they are, and to them that makes sense. My oldest said at some point that she wished she had Down syndrome, I think because she thinks that everybody (friends, family, etc) gives our youngest so much attention, and her extra therapies and doctor visits. That was quite an eye opener for me… I try to have some 'special time' with her and her other sister, too, but between school, homework, dinner, etc, there is only so much time… and I don't even have a job outside the home!
    Anyway, thanks for such an honest and touching post!!

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  3. Big brother, Little sister.

    Kerri, you are an amazing Mum x I am really glad Allie talks openly with you and is letting it out. Is it possible to do more therapy stuff during the day when Allie is in school? It's such a tough balancing act all the time isn't it? 🙂 hang in there! Maybe you and Allie need a Selena Gomez movie marathon! Night together if you can torment yourself for your daughters sake!

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  4. charity

    i'm with you on checking the bookbag before the bus comes. iv done that a few times. oops lol. and im glad allie is able to tell you her feeling without having to hide them.

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  5. Kristi Campbell

    Kerri. Ah sistah from anothah mistah…
    Where do I start? This is an amazing look into your life as a parent of both a “typical” and an “a-typical” girl. And heart-wrenching and heart-warming all at once because how DO you explain it? Although Allie “gets” it and rolls her eyes at you, does she really? I think it says a lot that you feel for both of them and are able to see the benefits and the drawbacks in both of their lives. I think it says that both of them got the perfect mommy for them. You.
    Because seriously? I know that although I, too, would rather be raising a “normal” kid, that I'd be missing out. I'd be missing out on relating to DS moms, to other “no diagnosis moms” like we are, and to seeing that the world isn't just going to happen as we imagined, once upon a time. And that in many ways, while it's so so so much harder, and so so so much more full of worry, that it's more blessed. More beautiful. Because there's something to be said for having to stop and see all of the little things. A new word? Still amazing for us. And that's something. Not what we imagined, but beautiful in itself.
    Maybe having Allie be able to chart some of Boo's progress would help. Like if she is responsible for writing down a new accomplishment, maybe she will feel really proud of being an advocate.

    And yeah, I'd totally get her those horse books, too.

    PS – Kudos on the bus thing. I haven't yet braved putting Tucker on a bus but want to, for selfish reasons, like having an extra hour a day…just haven't been able to do that yet. Hope to before summer school starts though as the hours are shorter and I'm already completely overwhelmed.
    PPS – therapy TOTALLY counts as an activity. You're somewhere out of the house, there are things to do, and that = activity in my book.
    PPPS – you are awesome. And both Allie and Boo know it, even though they don't know how to say it just now. And probably won't until they're in their late 20's. 😉

    Hugs, friend. Big ones.

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  6. icansaymama

    Oh Kerri, I feel your heartbreak. I know this is so hard but I think you really did a very good job trying to explain all this to Allie. And yeah, I would really try not to take her to every therapy session anymore if you find a way to manage that.
    I guess it is really difficult to raise a NT and a SN kid because you probably always have to balance that none of them is being put on the back burner, but then again, you have to try to balance that with two NT kids as well.
    I think you do a great job!
    Hugs to you!! xo

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  7. Kerri

    As far as Allie on the bus she hates me dropping her off. She says it makes her sad to leave! I like the idea of Allie charting Boo's progress though.

    I figure if the docs with a gazzillion dollars and degrees cannot explain it to us why Boo is Boo how can I! 🙂

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  8. Alana Terry

    Allie's wishes broke my heart. Poor big sister. And if you're anything like me you're probably feeling guilty too knowing you can't give Allie everything she wants (although the horse books sound like a good deal)! If I find my misplaced manual, I'll send it your way when I'm done memorizing it!

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  9. Misty @ Meet The Cottons

    when the girl scouts form came home with patty at the beginning of the school year, i knew i wanted to sign her up, but i never thought i would enjoy being the troop helper and it has been so much fun! i've shyed away from anything dance or gymnastics because of her delay, but i hope jt wants to play basketball. that seems like a nice inside activity. i am not looking forward to the practices, though. but, i worry about how to juggle after school therapy and after school practices, if and when the time comes!

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