Tuesday, December 05, 2006


Yep, today was one of "those" days. One of those days when Max's developmental delays slap me across the face. One of those days that reality sets in and emotions take over. And then of course on one of "those" days, you start questioning your abilities as the parent/therapist/nurse and of course nothing ever feels good enough.

The emotional wave started at Max's OT appointment. The OT, PT and I were looking through catalogues to decide which swing would be best to assist with Max's vestibular issues. (This is a big problem for many CHARGErs.) And we aren't talking about some baby swing here...we are talking about a ceiling installation of a heavy duty therapy swing in the middle of our play room. (Thank you Kristy for hooking me up with a possible contractor...very thoughtful.)

I want to do everything possible to give him this much needed sensory input. His head shaking doesn't appear to be stopping anytime soon and will become even more noticeable and invasive as he gets older. This swing should also help with torso strength and coordination. Anyway, for some reason this discussion as well as Max's lack of strength with another very simple toy just threw me. And the eyes started to tear up...

Then we went to Target for some new therapy toys suggested by his OT. When I realized that I was buying toys in the 6 month range (simple cause and effect toys), it hit me again. My child is nearly 19 months old...yet developmentally we are nowhere even close.

Perhaps this wave of emotion really started last night. We had dinner at Eliz's house and played with Tom Tom and Jackson. As much as I absolutely love spending time with my amazing, adorable nephews, it also is such a harsh reality check. Thomas (same age as Max) is incredibly well developed. While Max is laying there on the floor mouthing a toy, Thomas is feeding the dogs...literally. Getting the scoop of food and bringing it over to the dog bowls. He is very impressive. And while I know, I know, I know I am not supposed to compare...sometimes you can't help it.

Anyway, enough of the pity party. Tonight Max and I had a good and happy night and I am excited to play with all of our new toys tomorrow. We made several homemade toys tonight too and I think they are going to work great. Plus we have several therapy appointments in the next few days, and I am looking forward to setting up new short term goals to give us that much needed encouragement.


elle said...

all charge mums have that i know isnt that part of being a charge mum LOL

Anonymous said...

Ah, those days hit when we least expect them. I've learned to just let the feelings come; they're normal and then she'll do something that just makes me crack up or smile and it's over as quickly as it came.

**hugs** It's been a while since I had one of those, but it still does happen now and again. I find it doesn't get easier but takes me less time to get over now that she's older.

Diane said...

Hugs to you Amy. Keep going forward, this too shall pass. We love you and are praying for the both of you. Please keep us in your prayers, too. Had to send dad to Hospice House yesterday. I cried all night. Now off to a school meeting to get help for my ADHD child. Life isn't easy, is it? Hugs to both of you.

Diane and Alex

CrystalandEva said...

Amy hun, please remember you are not alone out there.
We have a very close friend who has a son 2 weeks younger then Eva. IT KILLS ME TO SEE HIM SOMETIMES!! There are days his mom tells me what he did or said and I think "stop throwing it in my face!!" But really she is not she is just a proud mommy. He can walk, talk, run, jump, do summersults,and spell his name. I am crushed somedays by it all. But them I see Eva do something she never did before and get really excited and I call everyone I know to tell them. And you know what when I call that friend of mine she lets me tell my exciting news and she gets just as excited, she loves that little girl so much!!
I also relized how many people Eva has touched in the last 20 months and almost everyone we know looks at life alot different now.
So even tho our kids don't do everything other kids their ages do they do something different they touch lives and give us hope and love!!

Anonymous said...

Dear Amy. Your posts bring me to my knees sometimes. As Diane said "Keep moving forward." Keep delighting in everything Max is doing. And I so agree with what Crystal has said.....she said that people who have met or even know about Eva...they look at life differently now. I agree. I'm a case manager and I have looked at life so different for many years. I wish we could get more people to do this. I'm very glad that you have your friend who is giving you tips on how to receive stuff for Max...ie: the swing. Getting services can be a tangled web sometimes. You and Max continue to be in our thoughts and we will continue to pray for you guys.

Anonymous said...

Cedie is 2 weeks older than Maxwell and he is way ahead of her.

Like Crystal said, you aren't alone. I went to a baby shower this weekend and got a doubleshot of harsh reality: Cedie can fit into some of the shoes & clothes that the mom-to-be was given for the newborn and alot of the moms were complaining about their children's walking ages- as if not walking by 12 mths is something to gawk at.

Hope today goes better for you. Just think about how far he has come along and the troubles he has faced in order to get there. He is called MIGHTY MAX for a good reason!


Jennifer (and Cedie)

Anonymous said...

Amy, there is no better mommy for Max. You love everything that he DOES do. You celebrate all the joy.

Max has come so far because of YOU! Max is loved so much and you can tell he loves his Mommy.

Down days will come, but there are many more up days then down now. You are amazing! You are my hero.

Mark and Jaye said...

Max may not play with toys that are 'age appropriate'. He may not walk 'on schedule'. He may do alot of things 'delayed'. But how many 19 month olds do you know who have humbled adults and made them appreciate life for what it simply is...a gift.
Max is a miracle...he may go a little slower than other kids...but he will always be miles ahead in so many other important ways!
Hugs to you...

Sarah Key Storrs said...


I hear you--it totally sucks! (and I don't like to use that word, but it fits for the situation) Most of the time I can stay happy inside of our little "look at all the progress he has made" bubble. But it's tough when Evan plays with his friend Gabe (born 2 weeks before Evan), and Gabe can climb up bar stools, speak in short sentences, eat real food, show attachment to his mom--Evan doesn't do any of those things yet.


kanda said...

Amy, I so remember those days when my daughter was so far behind her baby peers. Playgroups were painful. But while other mothers were complaining about their babies growing up so fast, climbing the furniture, and running off in malls, I realized that I was actually blessed in a way by an extended babyhood for my daughter. Her stages lasted much longer, instead of being fleeting discoveries.

Now she is seven and I still worry, maybe she is too sheltered, maybe she would be able to do more things had I pushed her, enrolled her in this or that...

But I want her childhood to be happy, not a constant battle to catch up to her peers. I'm coming to accept that she will likely always be behind in comparison, but that she has her own time table for development and has made great strides.

I feel your sorrow and understand how painful it can be knowing your child is "behind." That is why it is so important to keep up the connection with moms of other "special" kids. Best wishes.

Drew said...

Hey Amy,

I don't really have anything to say that would lift what you are feeling right now. I just wanted to let you know that I was thinking of you and Maxwell and that I think you are an amazing mother. I believe Maxwell has achieved more amazing feats in his first 19 months than most people will in a lifetime. He's overcome so many obstacles already. He's a fighter and I know he gets that from his Mom.

We love you guys.

Mary Karr said...

Amy, I agree completely with Drew. Please try to concentrate on how far Maxwell has come since last year instead of how far he has to go. I so admire you and all that you do. Maxwell has no father to help with him - all the responsibility is on you and you do an amazing job.

Diane said...


Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It's then we have to remember
That it's in the valleys we grow.

If we always stayed on the mountain top And never experienced pain,
We would never appreciate God's love
And would be living in vain.

We have so much to learn
And our growth is very slow,
Sometimes we need the mountain tops,
But it's in the valleys we grow.

We do not always understand
Why things happen as they do,
But I am very sure of one thing.
My Lord will see me through.

The little valleys are nothing
When we picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.

Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow.

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for the valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow!

Have a blessed day!

Poem © Jane Eggleston

The shortest distance between a problem and a solution
is the distance between your knees and the floor.
The one who kneels to the Lord,
can stand up to anything.

Psalms 5