Posted by: Nancy Brown | August 4, 2007

Frustrating..

The past little bit I have been really frustrated. With myself mostly but also with the situation that is around me all the time. There is no escape it feels like.

Let me start first with a positive note. I LOVE Tyler and the looks and things he says and does. He makes my world and he is my world. He is such a miracle and I am so thankful that I was entrusted to have him as my own. There really is something special about him and I could never deny that.

With that said. I still get frustrated. Not at Ty in particular but at the situation at hand.

First frustration… In the midst of our NICU journey it was repeated several times that preemies generally catch up around 2. With that thought always in the back of my mind we are quickly approaching his second birthday and “catch up” is not a term that I see being fulfilled. I he doing things. Yes, and he is learning new things everyday and he is very smart. Is he still “developmentally delayed” uh.. YA! Is he going to “catch up” by age 2. No. I am pretty sure that in order to not be in denial of the things at hand.. he will not be caught up by 2. I am pretty sure that term is for older preemies who have no brain bleeds and other major issues from their prematurity.

Second frustration..The amount of specialists and therapists we see there are a few things that are repeatedly coming up. When I bring it home and talk about it with”  family and friends I get the exact same answer from multiple people. ” Well I think they are wrong” or ” We knew him being born that early would cause problems” Yes. I knew that there were things that could be wrong with him, but as was mentioned earlier there was always that “hope” that he would catch up and be fine. He had defined the odds so far, why not one more thing.

Three… It goes along with the above mentioned #2,  While you all might say those things * I * am the one that is hearing them and having to tell others. I take it home. I have to be the one to implement any new changes that come with the docs and people telling us something new. Yes, you deal with it to a degree because you are here and around and you love us but ultimately it falls on my shoulders to make sure that all the regimen is followed.

Four. I want to feel normal. I told my mom that sometimes when I leave at night I pretend that I live a normal life at home. I told that to Dallas and he said we are normal. Well, while we are “normal” what we do everyday is not normal. Letting strangers come into our home to help us teach our child to do normal things is not NORMAL. A normal life doesn’t consist of knowing per kilo what your kid can take. Where all the hosptials are that take kids. And my most pressing.. why he won’t sleep. That isn’t “normal”

Five.. Why do insurance companies make it so difficult to get the things our kids need. It was posted on my friend Lisa’s blog that parents with kids with special health care needs are always poor. I never understood that until recently.  While we don’t have a deductible here in Arizona we do co pays and presription stuff we can’t get our insurance company to pay for AFO’s. They told me that they were “cosmetic.” How is that cosmetic? They are braces for their legs. It isn’t cosmetic. I told the girl that we needed them to walk and she said we would rather buy a wheel chair. HELLO… Have you ever met my child. He isn’t going to sit down in a wheelchair. He also doesn’t NEED a wheelchair. So in order to get them a parent has to 1) divorce their spouse to say they don’t have an income. 2) Make not enough money to live on in order to get Access (AZ version of medicaid) 3) be lucky enough to get long term care the first time you apply 4) Pay out of pocket. No wonder special needs people are POOR!!

* Just so you know. We did find a place to get his braces. Shriners hospital that we were connected with in Utah has a Pheonix clinic every other month and we will be going there to get our AFO’s. Shriners is FREE!! Thank you SHRINERS!!*

Six. I am sick and tired of people of “normal” kids getting angry at me for feeling all the things listed above. But remember number three. You don’t have strangers coming in your house. And I am sick of the “normal” people telling me that they understand when they have never once asked me how it is for me and then asked questions.

SEVEN!! ( told you I was frustrated) Why is it that if your friends have kids with problems.. IE Autism or something. You have amazing support and comfort and think of them so highly but when someone in your family circle has other things wrong you think they are whiny people who should get over it? Why not ask us what it is like. Why not think of us highly and think they go through a lot and show COMPASSION!! * check out the post like three down for more info and reasons why compassion is GOOD!*

I get frustrated with therapist telling me that I am still grieving for the child I *thought* I would have. Grieveing for the *normal* child. No, actually I am crying in your office because I am so sick of feeling alone in a world that doesn’t want to ask me questions or ask me what can I do or just be there when I need something.

I get frustrated with people who are suppose to be in a support group but are constantly back stabbing.  Why go behind someones back to someone else and tell them all the horrible things that you dislike about them when you have NEVER come to that person.

I am frustrated at my self for having less patients for Tyler. He seems so fussy recently and I am at a loss as to why and what to do to help him. He is getting teeth but the constant fussy is enough to make me go nuts.

I am frustrated for feeling bad that I go to work at night and am happy to be in the “normal” world and feel “normal”

I feel bad that Ty is so clingy to me that I feel smoothered sometimes. 

I think that is about it. I guess I am just a frustrated person right now. It is hard sometimes to be positive when it feels just really low. If ONE thing could come easy for Ty ( other than being extremely handsome and cute) then I would be happy. Just one thing.

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Responses

  1. Oh Nancy…I’m sorry you are feeling so frustrated right now. I do know how you’re feeling and it’s not easy. You just have to be super picky about who you pick to be your “balcony” people…the ones that will be an encouragement to you…not the ones that will suck the life out of you! I think you are a super mom and a super advocate for Ty…and by the way, I think a lot of therapists are nuts! lol!! I was told by one just a month after Gus died that she thought I was “still grieving the death of my child”….gee….ya think?! Idiot!! Anyway…I gotcha friend…I understand…

  2. Your feelings are all totally justified and normal for any mom of a micro-preemie who’s future is unknown. I find myself thinking many of the same things at times.

    In regards to the insurance, does your state have any programs specifically for medically fragile/disabled children? Dakota has private insurance through my husbands work but unfortunately she reached her lifetime maximum while still in the NICU. That was when I learned about some of the programs offered by the state for families who would not qualify for your typical state-aid due to higher incomes. The program Dakota’s in (Medically Dependent Childrens Program) provides her with medicaid in addition to many other benefits and totally disregards my husband’s income, looking only at Dakota’s personal income. Unfortunately there’s typically a wait (for MDCP it’s 8-10yrs) but there are back ways to get into those programs if it’s needed.

  3. Nancy,
    I am so sorry that you are frustrated. It is okay to feel frustrated. I can not imagine what you have been through and continue to go through. I do know that you have an adorable little boy who loves you more than anyone or anything in the world. Without a mom like you, Tyler wouldn’t have progressed at much as he has….which is a miracle in and of itself. You are doing a wonderful job as a mother to a little boy who may have a lot of needs, but who’s smile alone lets us all know that he is an angel.

  4. Nancy,
    I am very proud of you, even when you are frustrated! Yes, life is hard! (Not to down play your feelings) Even when your children are *normal*, but exspecially so when they have extra issues. But one thing I have learned is that children like sweet Tyler were given to Mothers and Fathers who have the love, ability and the inner strength to provide for thier needs. I have watched you and I know Tyler is as *normal* as he is because of your care and constant attention. I guess we are all on the rides of our lives. When the roller coaster ends we will miss it and cherish the up AND down memories. Don’t blink – Tyler will be 19 and leaving on a mission if you do! I wish I could go back to the day that Dallas wanted me to rock him all day long when I had so much to do. I love you, I could not have picked a better wife for my son or mother for my grandson.
    Mom Brown

  5. Awwwwwwww the pp made me tear up, but she said it so well..It is hard, I know the frustrations, the why’s, the what if’s…If their is one thing I tell people when they ask about Kellar and how he’s doing is that it’s not easy, it’s not all fun and games, don’t get me wrong I love the time that I can play with Kellar, but to have to do therapies, stretches, neck turns is work, it’s hard and people don’t understand what it’s like to have so many different appointments, therapist and traveling here and there to all these things…I find myself so upset when I see other kids walking and doing these things that if Kellar had came when he was supposed to he’d be doing…You are doing great, and yes before we know it these feeelings will be a thing of the past..

  6. Hello Nancy. I have just now visited your site for the first time and finally found a person who tells it like it is…I feel that so many parents tell the “my child is disabled but it’s all such a miracle roses and sunshine” that it’s nice to hear some reality.
    also, Tyler looks like my son in terms of coloring, etc, so I plan to visit the site often. do you have a private email?


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