UPDATE: After reading the comments below I found myself wishing we could all get together and just talk and talk and talk.
Oh. And give lots of hugs.  Cause, sometimes hugs, like chocolate can go a long way with making a girl’s heart sing.
~~______________~~
If you were to ask me whether or not Parker has made my marriage stronger or more stressful, I’d have to hesitate before I answered you.
Not because I don’t know the answer, but because I’m not sure how you would react to it.
If I told you that Parker has made our marriage, our family, a stronger unit would you think I was trying to set myself up as some kind of perfect parent, or I was trying to make you feel bad?
Cause I’m totally not. On both accounts.
Sometimes it feels as though parents of kids with special needs eye me with suspicion when I say that Parker has been nothing but a joy….exploding ostomy bags and all.
Would you be afraid to tell me that your child with special needs has caused an unbelievable amount of stress in your family?
Would you believe me when I say that I respect your feelings?
I might not have experienced them, but I respect them.
You know how when someone looks at you and tells you that they know just how you feel……and you know deep down inside that they really don’t. I mean how could they? They’ve never walked a mile in your heart.
Well, I don’t want to be that person.
We all find ourselves in circumstances that are as varying as our children’s diagnoses.
It’s only natural that our experiences will be different.  That we might not truly know how another is feeling, but we still respect those feelings and support their owner.
Has there ever been a time when you’ve been afraid to share a milestone your kid has achieved for fear of making another parent feel badly that their child hasn’t mastered (or maybe never will) that milestone?
Has there ever been a time when you have chosen not share your fears or struggles of raising a child with special needs because you were afraid of the judgments of others?
I believe in the strength and power that lies within this niche we call special needs. But to fully utilize it’s potential, we’ve got to have trust in each other.
We need to celebrate the achievements of others, while keeping the faith that our kid’s day will come in it’s own unique way.
There’s so much we could learn from each other if we could just find the courage to open up, believing that we have the best intentions of ALL of our children at heart.
Even if we end up disappointed a time or two, I don’t think anyone ever really loses out when they share or ask with good intent. They are the ones who can walk away with their heads held high knowing they have spoken from their hearts.
Tammy and Parker,
I just wrote a post about can’t do Down syndrome without God. It’s not easy. I go through ups and downs still.
Yesterday, I was watching her and cried b/c although she’s absolutely a joy and beautiful – I understand she looks like she’s 1 instead of almost 3.
Call me a cry baby, but I had a moment. She was holding my hand and I was holding hers and it looked so tiny in mine. Things I go through from time to time. Nonsense to some, but in my heart it was something I needed to digest.
My husband has a saying when I get in a funk – “Do not despise her design.” It snaps me back to reality and I move on once again with the beauty that surrounds me.
And yes, having a child with special needs has created added stress in our marriage – but it has also been good for us to endure and grow in character.
One thing is for sure – God has never been more apparent and clear in my life. And Gabriella is a gift.
Jasmine,
I loved your reply. Parker is a teeny bit too. We weigh him every Tuesday and some days it really is hard.
Once, when I had Parker at a children’s clothing store a Mama with a little one Parker’s size came up and asked me how old he was.
When I told her, she looked a little closer at Parker then looked at me and suddenly turned around and walked away.
I don’t know if she thought I was lying to her, or if she suddenly thought, ‘whoa, something’s not right here!’
It hurt for a few minutes. It really did.
For a while I decided to scurry around the age question with Parker.
Now? I look ’em in the eye and tell them how old he is. If they choose to walk away….they’re loss.
I love your words about God and what a gift Gabriella is.
Twitter: MommaHopeful
Mar 29, 10
I just adore you.
And I, you, girlfriend. *smooch*
What a beautiful post.
“Has there ever been a time when you have chosen not share your fears or struggles of raising a child with special needs because you were afraid of the judgments of others?”
I can really relate to this when it comes to many in my family. Heck just this weekend, my brother (an empty nester) decided it was appropriate to yell at me through 2 emails for not taking care of my step-mom in a manner he thought appropriate. Never did he ask what was going on in our lives to cause the decisions that were made. Hard to share when you are judged up front.
Twitter: mamikaze
Mar 29, 10
I can admit the tremendous amount of stress. I can admit the affect it has had on my other child. What bugs me is when others give me the “of course you’re busy/can’t come/stressed out.” I wish people would drop the smiling facade and ask to help.
Tell me about the kind of help you would like people to offer. I think there are lots of parents who would love some help……but don’t know how to go about asking for it.
I feel like this post was written for me! I can’t believe the emotions that come with these special people. I remember when he was a baby I had a lot of resentment. I was getting in the elevator at PCMC to see Jax. A man got in and was going to the same floor. He asked me if I had a child in PICU. I said yes. He said that they had been there for 10 days, in a really put out voice. He asked me how long we’d been there. I replied 3 months! He was speechless after that. But I’ve learned that all experiences are different. That 10 days really is a long time to be in Intensive care. Most parents won’t ever have to experience that with their children.
And I was quite jealous this weekend when we went to play with Max and I had to hold Jax up just to take their pictures. Max was reaching for Jax and Jax was oblivous to the whole thing. It makes me sad.
I love talking to other special needs families, with different and the same problems. We all have a special bond that runs deep!
You and I need to do lunch sometime. When Parker’s better and not in danger of giving Jax something you need to come down.
I have cookies and will share.
I attended a conference once where they went around the circle talking about their babies with Down Syndrome. I just felt like I didn’t belong in that room because the majority (not everything) of what was said felt negative, at least to me. I can never talk about the JOY I’ve experienced by having Porter without tears. I could never truly share how wonderful it has been. I didn’t know what to say when my turn came, because my feelings were sooo different.
Porter has been relatively healthy for a child with DS. The medical fears and trials have been minimal for us, so there is a lot I can’t relate to. However, all of these kids have my heart!
Megs, sometimes I wonder if it’s because of all of Parker’s medical issues…..especially the damn pulmonary hypertension that makes it so we couldn’t care less about the extra chromosome.
I’m really having to work through the whole idea of a less than normal life span due to this disease. I find myself often thinking that life would be perfect if it weren’t for those yearly right heart caths.
You know what? If you were ever in a situation like that again, I’d share what you felt in your heart, regardless of the negative others might be feeling. I bet there were Moms who would have rejoiced at your perspective.
I try to do that on Parker’s blog. I try to show that even with all the health issues, money stress…….everything, that Parker is a joy. A blessing. And that a life with Down syndrome is truly a life worth living.
Twitter: therextras
Mar 29, 10
You are not ‘that person’.
“I believe in the strength and power that lies within this niche we call special needs. But to fully utilize it’s potential, we’ve got to have trust in each other.” Good for you, Tammy, and keep trying.
At the same time, I emphasize Lacey’s words: “all experiences are different”.
With all the individuality of each parent, family and child, why would expect uniformity in a group of people who have children with the broad moniker of special needs?
Where ‘strength and power’ are needed, I suppose, being aligned in a particular cause. Indeed, mutual trust is important. I respect your efforts to ‘lead the charge’. Well said. I also respect those who either cannot or will not be part of a ’cause’.
Leading a charge? Me? Oh, wait. I’m pretty sure that’s what other’s would call being a pain in the ass, no?
THAT I can relate to. hee,hee
Seriously, I HATE seeing the pain some parents are experiencing. I hate seeing the guilt they often feel for some of their feelings.
There is NO right or wrong on this journey. There is just your experience.
I truly believe that we could learn so much from each other. If we could just feel safe opening up to one another.
I think that my husband and I stuck together to get through the early days of heart surgeries and learning what Down syndrome would mean for The Biscuit. Somehow adding a typical sister to the mix has made things harder for us as a couple. Who knows, maybe we would be struggling right now without her, but so many conversations find us on opposite sides and they start with her so often. Ugh. I hate writing this “outloud” on the internet (which is why I haven’t been posting on my blog). I’ve got to get myself another ID so I can say the things I know he doesn’t want me to say.
KYouell,
Well, you can write them outloud HERE.
As a matter of fact, how about guest posting here? Whadda ya say?
I’m willing to bet there are others feeling you exact same way, and love to know that they are NOT alone.
wonderful post.
*smooch*
Love this post! Lily has made us a much stronger couple and family. We really do believe that she is our ladder to heaven. She is amazing! I have to say that I do hold back on her accomplishments because people compare their child to her all the time. “Why isn’t my child talking like her?” “Wow, she is tall! My child is short.” I didn’t do anything different with her. She got no extra speech lessons; just what the school gave her, twice a week for 30 minutes – whoopee! I always feel bad when I tell that. She is just who she is.
Lily is the amazing. But you know what? Meeting Lily gave me such great joy and such excitement for Parker’s future. Even if he never makes the milestones Lily has, the brightness of hope that shines off of your girl is beautiful.
Love that girl of yours.
I admire your honesty and although the truth can be hard sometimes, I am a true believer that the truth will set you free.
Hey Katie! Love it when you stop by and comment!
“Has there ever been a time when you’ve been afraid to share a milestone your kid has achieved for fear of making another parent feel badly that their child hasn’t mastered (or maybe never will) that milestone?”
Absolutely! For us, the medical problems that can come with DS have been minimal. And, Osiyyah tends to be a “higher functioning” little guy with DS. So, there are times when I don’t want to say, he sat at 9 months, pulled to stand at 13 months, walked at 17 months, does everything else the family does, etc, because I don’t want to make someone else feel bad. Feel bad because their child isn’t doing those things yet. Or, their child has a whole other array of problems that aren’t even related to DS, so they’ve been “delayed” even more. Down syndrome, even though it’s Osiyyah’s “biggest” diagnosis, is sooooo minimal in our day to day lives.
But, even if Osiyyah wasn’t as “high functioning” as he is, he’d still be loved the same. I’d embrace a child who was completely helpless and needed tons of care. In fact, that’s the kind of child I’d love to adopt. And this may sound odd to some, but for me, to bring in a child who’s 4 years old, but doing the things of a 1 year old, would be wonderfully amazing. The opportunity our family would have. But, more so, the potential that child would have by being in a family. Of course my life as I know it today would have to change *drastically*, but it would be *more* than worth it.
I know I’ve kind of gone off a bit of a side track here, but it’s just my thoughts.
Qadoshyah
Twitter: therextras
Apr 1, 10
Came back to give this:
http://www.bothhandsandaflashlight.com/2010/04/01/a-prayer-of-st-francis-for-autism/
I keep forgetting to ask, what does that thing that starts with ikw mean?
When we were first introduced to the Down syndrome community, we noticed a heavy emphasis placed on a child’s skills and level of functionality. Plus, I sometimes sense that parents are hesitant to discuss the difficulties of caring for a child with special needs because they don’t want to sound negative. They are, after all, their child’s best advocate.
However, I think people need to hear the good with the bad to understand how incessantly challenging raising a child with special needs can be. While most parents don’t need sympathy, they might need government-funded respite care to keep their family intact. A picture of perfect harmony does little to encourage funding of these important programs.