Nathaniel is four months yesterday and several parents told me by now I would be getting a grip but you know at times I still feel so overwhelmed.

Feeding is still a big deal even though we are a few months past g-tube placement. I could write a book on that alone.

Breathing is much better but he just had his first serious cold and spent a week on oxygen but not in the hospital!

He is weaned, that is super sad but he was never able to nurse and I just ran out of milk this past week. I held out hopes that might happen but it never did.

There is so much we need to do therapy wise. We have the evaluations and get pages of things we need to be doing with him and there isn't time in the day. Feeding and suctioning snot seems to take all my time and then he does need diaper changes and kisses too. We don't see the doctor as often but still at least one a week.

I still never got that new mommy glow, how else to you describe that but if you have children you know what I mean. An hour after he was born they agreed to let me off the bed and I have been running ever since. We are not in love yet. Too sad. We never got to be all snuggly and bond and bask in each other. All of a sudden he is not a newborn anymore. I'm not depressed but not over the moon either.

It is really beginning to sink in that this is a lifelong disability. He is approved now for mental retardation services for life they told me. We are still working on Medicaid but that should be approved too under Katie Beckett. He has a repite worker and Early Intervention. All of these people are going to be involved with us for a long time. I'm not going to be able to cure this next week KWIM. We are going to have to work very hard with him to help him reach his full potential. I just keep thinking I am going to get on top of this.

I guess that is all but I am feeling very sad, not really a question, just don't know where else to put it.

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Mom of eight here on earth and four more in heaven.

I have the gift of a little perspective, it's only mine, but here goes:
I'm not a Mom, so my feelings may be a bit different. When both of my children were born, the event itself was world-altering. The next day, I was confronted with this being that only needed stuff from me. Sincerely, I didn't really 'fall in love' with either of my kids until they started to emerge as persons. If my memory serves, that was several months into the deal. What I mostly remember is being beyond exhausted, and I wasn't Mom. Mom carries the brunt of this arrangement (she still does).
I remember then, and I say to you, now, that there were weeks when all there was was the doing - that's what I read in your post. This is hard stuff.
You just have to find the strength, and get help where you can, to keep it going. I hope we can help, some. There are better times ahead. "One Day at a Time" is cliche', but it's also a truth. Emma's making progress on her potty training, finally. I'll still take changing her diaper for her hugs, smiles, and humor today, and celebrate each trip to the potty when she gets it right. There will be joy, and Nathaniel will bring it.
-Jeff

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Nature goes her own way and all that to us seems an exception is really according to order.
-Goethe

When Angela was born, we were very much in your shoes, except that she didn't have her first major surgery (nissen and gtube) until 11 months. That whole first year I kept telling myself, "If we can get to the 12 months mark, most of this medical crap will be behind us." except that as her birthday approached, instead of getting better she had surgeries looming in front of her.

The whole "life-long" thing didn't bother me so much. My other kids have things that are "life-long" too. Like Tourette Syndrome. I just took each day one step at a time, and if I didn't get to the therapies, etc. OH WELL!!! She was a baby first!

I did have the big kids help with therapy stuff A LOT which they absolutely loved doing! Every week after each therapist left, that night I'd say, "This week we need to work with Angela on (insert skill here). Is anyone interested in helping me with that? Anyone have any ideas how we could work on it?" All the boys would jump in with ideas. My older boys who were 10 and 11 at the time very quickly learned how to work the feeding pump. I'd always check it of course, but we never had any problems. Afterall, they could work a computer better than I could, why not the feeding pump? LOL

What I'm saying is, don't be afraid to let your other kids help out with him. They're very capable, and the best teachers you could ask for. You'll be amazed at what he learns from them!

When you decide to have kids, nobody tells you about these 'what if" situations. In your wildest dreams you would never put yourself in this situation EXPECTING to be there. Its only natural to be a bit put out by it. I never would have thought my son would end up developing paranoid schizophrenia either. Just like nobody told us we needed a nursing degree, or a background in genetics, nobody told me I needed a ph.d. in psychiatric medicine either. But I'm here...I just do it because I'm the mom and it's my job. I don't LIKE it. It made getting from age 14-19 with my son beyond difficult.

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~Leah~

Did you vote for my mom today? http://www.blogforayear.com/profiles/leah

http://www.gardenofeagan.blogspot.com
mom to Noah 20, Tyler 18,Angela 11 (DS)

Jeff~Exactly, we are busy doing. I am old enough to know my emotions can't be trusted and I keep putting one foot in front of the other and know sometime the feelings will happen. We have good moments of course but it is very different from having a baby without disabilities.

Leah~All of the kids do help with therapy. So much is little stuff like offering toys on the right side to encourage him to look more that way. They help with the rocking and cuddling too. There is always a line to hold the baby.

He is fortunate to be youngest of a large family because if I can't do something there is always someone else who will.

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Mom of eight here on earth and four more in heaven.

We were very fortunate to not have the feeding issues and problems to deal with. But, at 9 weeks Carson had surgery and then we were in a world wind of Dr.'s and talks of chemo and my life just felt out of control. That was such a difficult time because we couldn't just be normal and enjoy our baby- we were too busy trying to make decisions regarding his health and fighting Dr's. Those months I can honestly say I was just going through the motions - not living life. I don't know when if finally happened, but all of sudden DS was not that big of a deal and my little man was the light of every day. Hang in there, I promise it gets easier. If someone had told me our life would be normal at that time I would not have believed them. Now, I can't imagine life any other way.


Kayla

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Callan 7, Kenna 4, Carson 2

Kayla~I love your new Christmas pics!

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Mom of eight here on earth and four more in heaven.

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,
,


Callan 7, Kenna 4, Carson 2

I understand where you are coming from to a point. In the beginning I never had any real health issues with Shaun but later on things have developed. Shaun has feeding issues in regards to aspirating and everything needs to be thickened for him. I remember in the very beginning I wondered how I was going to do everything especially being a single parent and working full time but it all worked out. Am I exhausted?? Yes, this is partially because I am an older mom and trust me I had no maternal glow after Shaun was born. I had to stop nursing Shaun as well and I cried so much those first few weeks I stopped I felt like he was being robbed of something or maybe it was because I just loved those moments holding him so close. Shaun just turned a year and now we are doing are rounds of doctors between therapy visits and it can get crazy but I take it day by day. That's all I can do I am only one person and so are you.

I use to look at the future all the time but I don 't do that anymore because all it would do is weigh my heart down and take away from what Shaun could and would be able to do. I had to stop focusing in so much on the dx and just look at him as my baby that need a little bit of extra care. I rarely think about the DS anymore because I am now so in love with my son that it doesn't even matter. You will get there and you will figure a system out that will get everything accomplished for Nathaniel. It just takes some time but you'll get there. Once Nathaniel starts blooming into his own little person you will be amazed and fall in love. Hang in there momma it will get better it's a little tough now but in the end you'll have no regrets.

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Dawn
Mom to Anthony 5/19/86 Elizabeth 10/5/88 Shaun 12/06/06 (DS)

I just want to add that I think you've probably come a lot farther than you realize. When I read your post today, and I think back on your posts from 2 months ago, the difference is huge. Sometimes it's baby steps...one day at a time. And that first year really is the hardest. You're still dealing with the diagnosis. And on top of that you're totally inundated with doctors and therapies, etc. You're doing good. Give yourself a little more time. And you don't have to be "in love" with him just yet. As long as you love him (there is a differnence between love and in love) that is what counts. Hold, love, nurture, learn to accept, take one day at a time. That's all you can do and that's what you're doing. You WILL get there...soon.

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Mr. Oliver...3 years old

And little brother Sebastian--19 months

I think we all feel like that from time to time. It doesnt matter how old they are.

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Kelly Rimmer
Mom to
Paige-11-12-92
Aaron-06-16-99(Adhd and Dyslexia)
08-19-05 (DS)
Kristen-11-1-2006
Baby #5 due 3-18-08


Helen Keller once said,
"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved".


www.discoverytoyslink.com/kellystoybox
www.firstgiving.com/AlexisRimmer

We understand your feelings of being overwhelmed. I spent my whole first year basically overwhelmed. I think it's hard to wait and see...to see the first smiles, to see how they begin to interact with you and their sibs, how they do with their milestones. So much is "what if" in the beginning and it can be a very scary place. And we are all different. Some of us get past the what if's quickly, some dwell there. Either way, with time, it does get better, and with time, you will fall in love with your little guy and it will be beyond anything you've felt before. My blog is at the bottom of my post. If you ever get a chance, check out my post on there entitled, "Red Balloon". It sums up what I am trying to say.

Hang in there,

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Gillian
wife to Sergei and mom to Elaina (7), Zoya (5 1/2) and Polina (04/05/06 DS)

http://lintofpocket.wordpress.com/

We all feel overwhelmed at some point or another. Maeve had 2 major surgeries within 4 months - we spent more time in the hospital than at home. Heck, we even went to the wedding of one of Maeve's favorite nurses! All those doctors visits, that is what overwhelms me. Getting to the hospital, parking, getting us out of the car, into the hospital, keeping Maeve off the floor and entertained as our 10AM appointmentt drags on to Noon - that's what drives me crazy.

We have our therapy 4 days a week, but Sean and I just play with her the rest of the time. We don't stress too much about the "work" part of play. She is doing really well, so we must be doing something right ; )

I don't often think about her DS being a lifelong problem. I see challenges in her future, but we'll get to them when we get to them. Her medical issues cause me more stress than any delays. I just want to get her healthy and spend one month without a doctors appt!

We just try to enjoy and live each day, even if its just dancing in the kitchen. The smile on Maeve's face and her giggle are enough to make my heart melt and realize the laundry can wait and we cuddle and play. She is our Princess!

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GinnyM - 33
SeanM - 35
Maeve - 25 August 2006


Maeve's CaringBridge site: www.caringbridge.org/visit/maevemannion

Maeve's First Giving site:
www.firstgiving.com/maevemannion

Down Syndrome & Awareness Accessories
www.got47.blogspot.com









"I can do all things through him that strengthens me" - Phillipians 4:13

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Mom of eight here on earth and four more in heaven.

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GinnyM - 33
SeanM - 35
Maeve - 25 August 2006


Maeve's CaringBridge site: www.caringbridge.org/visit/maevemannion

Maeve's First Giving site:
www.firstgiving.com/maevemannion

Down Syndrome & Awareness Accessories
www.got47.blogspot.com









"I can do all things through him that strengthens me" - Phillipians 4:13

Hi,

I can completely relate to what you are feeling. Julia is almost 8 months old and I am so very thankful that she is still with us. She has undergone 7 surgeries total (4 open heart) and is now on oxygen and gtube feeding at home. Like you, the feeding is what gets me down the most. We are tied to that damn pump and since she is getting more mobile it makes it difficult to keep her still while her feeds run. Every 3 hours I have to try to bottle feed her and when that doesn't work give her a gtube feed.

I can't even move her from room to room easily because of the oxygen. I can't take her upstairs to her room without help from my husband and that just isn't right, in my opinion. The DS diagnosis on its own is hard enough to bear at times but when your child also has a multitude of health issues, it is a competely different story.

We also have a 2 year old and I feel like I have to brush her off so much because I am always doing something for Julia. I just don't want her to feel resentment because mommy spends more time with her sister right now.

I am hopeful that we can at least get off the oxygen in the next 2 months and that will make a world of difference!

Hang in there, you are not alone!!!

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Kimberly

DD Sofia 11-20-05
DD Julia 05-04-07

i am not a maternal person. i work construction and kind of have a more of a manly approach on life. before, i was ashamed of this. then after having my third child i woke up one day and was upset that my "maternal instincts" hadn't "kicked in". i thought there was something wrong with me. but when i look at my children, i love them (probably as most fathers love their children) and i realize that i am a GOOD PARENT. that's all that really matters. when my children need me, i'm there. i always will be, and WHO COULD ASK FOR MORE?

we are all different, and NO ONE should be ashamed of being overwhelmed of parenthood even if one particular child is more needy than others. only you know how to dish out your love and care. i know it was very hard for me to bond with jace, and i realized after his death that it was because his needs were being met by hospital personnel and all that was left for me to do was look at him and smile and sometimes even cry. that was the hardest part. when you can't be hands on, it's hard to BE THERE for your kids, you can just be there. if you know what i mean.

i hope this helps.

heather

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AMATUERS BUILT THE ARC, PROFESSIONALS BUILT THE TITANIC




connor 5/29/02 fayrhon 3/23/06 and coming soon, jace(ds)

i am not a maternal person. i work construction and kind of have a more of a manly approach on life. before, i was ashamed of this. then after having my third child i woke up one day and was upset that my "maternal instincts" hadn't "kicked in". i thought there was something wrong with me. but when i look at my children, i love them (probably as most fathers love their children) and i realize that i am a GOOD PARENT. that's all that really matters. when my children need me, i'm there. i always will be, and WHO COULD ASK FOR MORE?

we are all different, and NO ONE should be ashamed of being overwhelmed of parenthood even if one particular child is more needy than others. only you know how to dish out your love and care. i know it was very hard for me to bond with jace, and i realized after his death that it was because his needs were being met by hospital personnel and all that was left for me to do was look at him and smile and sometimes even cry. that was the hardest part. when you can't be hands on, it's hard to BE THERE for your kids, you can just be there. if you know what i mean.

i hope this helps.

heather

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AMATUERS BUILT THE ARC, PROFESSIONALS BUILT THE TITANIC




connor 5/29/02 fayrhon 3/23/06 and coming soon, jace(ds)

Julia's mom~ She is so precious. I can't even imagine going through open heart surgery four times and three other surgeries as well. That is sooo much in seven months. She is so full of joy and the love just comes through in her pictures. I know what you mean about the two year old as well. I feel so much guilt a lot of the time because I feel spread thin and that I am not doing anything well. I feel that I am not giving him as much as I gave the other children at that age and that feels bad too. There is just so much doing for the medical stuff I feel like there is nothing left of me for fun. I hate the g-tube. We are missing so much of a normal feeding relationship. All my dreams of how it would be to mother this baby went up in smoke.

Heather~I am sorry for all you are going through. The worst is when we can't hold them and feel that they belong to the hospital and not to us. Losing a baby is by far the greatest loss we can go through. I have lost four pregnancies and it was devastating. When Nathaniel was born and placed on a vent we didn't know if he would make it and that was terrifying.

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Mom of eight here on earth and four more in heaven.

I know how you feel. Just know there is no "time limit" on how you should feel towards your child. Chase is almost 13 months and the type of bond I have with him feels sort of like that of a caretaker rather than a mother. He was born "healthy" so I was fortunate enough to be able to just sit there and obsess over the fact that I am the mother of a child with Down syndrome. I hear from EVERYONE that the bond will happen. If they say when it will happen, I don't hear it. No true crystal ball exists, therefore, there is no way of knowing when anything like that will happen. Just keep taking care of your son, as you did with your other children, and focus on that. Everything will fall into place when you least expect it (at least that's what I am hoping for. ) Just know that you are not alone.

Sincerely,

Linda

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Linda - mom to Brendan 4/28/03, Chase 11/27/06 and wife to Ted

first off-your baby boy is precious. i know these times are hard, as i am sure most has told you it gets better. i so know the feeling of never having the baby glow. instead i looked horrible and slipped into a horrible depression, i had no problems falling in love with matthew...i would lock himself and me in my room not wanting to enter the real world.

my matthew is now 2 1/2 and i still get overwhelmed...but it just becomes a way of life, as hard as it is....your love will shine! i promise you-hang in there and if you need a friend i am here.

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Wife to Josh & Mommy to....
Kyle, Krystin & Matthew


"Every good and perfect gift is from above."

James 1:17