How to just take one day at a time

[Linny]

It's a bit of a pointless thread really but I'm kind of struggling with the old saying one day at a time that I keep getting told to do.

My daughter was diagnosed with a rare chromosome disorder at 5 weeks old and her future is very unknown. So far as we know at the moment, her health isn't massively impacted so for that I'm really thankful, but we are still going through appointments.

When I put aside the health part, we have been told she will most likely be delayed in every aspect of development and learning and the not knowing I'm finding really hard. I already see delays at 16 weeks and my head is just tired. I want to just enjoy this baby phase as she is most definately my last but I can't stop wondering and worrying if I could be doing more...

Sorry, more of a ramble really. I just can't seem to find my feet with it all and her future scares me!

 

[Blue12]

Hi. I'm not in your same shoes. But when I've had very upsetting things I've gone through I find that no one really knows what to say and you hear a lot of "advice". Like one day at a time and like things will get better and on and on and on. What I found helped is to tell myself to breath and tell myself yes this may be true but ten also state another truth - like this isn't fair - or this is emotionally draining. Kind of like stating one positive thing and one negative thing. All in the same sentence. It was like it allowed me to acknowledge te upset but also focus on a positive. I how that makes any sense. Hugs!!!!

 

[Ramanie]

Hi Linny,
I am so sorry for your situation. I have a child with Cerebral Palsy. He is a young man of 28 years now. I know what my DH and I went through when he was born.It was so very difficult that I almost went off my mind. Yes it was a one day at a time for us but we were able to cope with all the support we received. It was a continuous therapy of everything. So please seek medical help and continue therapy.
Saying this I want you to have strength and courage and never never give up. The sun shines at the end of our rainbows.. I will pray for you and your baby as it was our faith and prayer that saw us through.

 

[Linny]

Thank you both for your replies and kind words.

 

[DonnaBallona]

Hi Linny.

I have a nearly 2 year old with a very uncertain future too, we are waiting on an appt in a couple of weeks to find out whether his condition is inherited, genetic or life limiting.

we have endured 2 years of illness, oxygen at home, battled so many hospital stays I have lost count, we've had time away from home, trips to London, stayed in high dependency for an entire month....

saying 'take one day at a time' or 'what will be will be' is by far the worst thing to hear at this time. I feel for you. I wish I could say something to comfort you, or tell you things will get better but I won't because nobody truly knows that! All I will say is that you are not in this situation alone and that the love you have for your baby will see you through.

don't let this mar your time with her, make time just to sit and stare at her, stroke her hair and breathe in her scent as if this isn't happening! I love to sit and read stories to my son, as that's something I can do even when he is seriously ill.

I hope that things get better/easier for you and that your daughter continues to surprise you. We were told initially that it was unlikely my son would ever move at all unaided, he was in a very bad way after birth. now however, he is a walking very much able 23m old. he has some serious issues, but he is amazing in other ways.
stay strong mama. XX

 

[Linny]

Hi Linny.

I have a nearly 2 year old with a very uncertain future too, we are waiting on an appt in a couple of weeks to find out whether his condition is inherited, genetic or life limiting.

we have endured 2 years of illness, oxygen at home, battled so many hospital stays I have lost count, we've had time away from home, trips to London, stayed in high dependency for an entire month....

saying 'take one day at a time' or 'what will be will be' is by far the worst thing to hear at this time. I feel for you. I wish I could say something to comfort you, or tell you things will get better but I won't because nobody truly knows that! All I will say is that you are not in this situation alone and that the love you have for your baby will see you through.

don't let this mar your time with her, make time just to sit and stare at her, stroke her hair and breathe in her scent as if this isn't happening! I love to sit and read stories to my son, as that's something I can do even when he is seriously ill.

I hope that things get better/easier for you and that your daughter continues to surprise you. We were told initially that it was unlikely my son would ever move at all unaided, he was in a very bad way after birth. now however, he is a walking very much able 23m old. he has some serious issues, but he is amazing in other ways.
stay strong mama. XX

Thank you so much for your reply. I'm sorry to hear of your struggles too, I can't imagine the upset of countless hospital stays etc. I hope you get to your appointment soon and get the answers you need cos the not knowing is so hard.

I don't know if it's the same as you but every time I get good news about one thing then something else pops up and I'm back to worrying. And the waiting between for upcoming appointments - 12 weeks for a video fluoroscopy!!!!

She is so lovely though. Such an angel who gives me the sweetest smiles. I just didn't want this life for her and some days I find that harder than others x x

 

[sequeena]

My situation is different but I too worry about the future. We had some shitty news today, not life threatening but not great either. I just want my son to be happy, healthy and to be able to lead a normal life. I don't know if he'll ever be able to do that.

 

[Linny]

My situation is different but I too worry about the future. We had some shitty news today, not life threatening but not great either. I just want my son to be happy, healthy and to be able to lead a normal life. I don't know if he'll ever be able to do that.

I'm so sorry to hear that. It's very difficult to accept the struggles your child is likely going to face, when all you ever want for them is the very best in life. I often get told that she won't know any different as it's all she's known...but I know different and it doesn't make me feel better x x

 

[LaughOutLoud]

Im sorry for what you are going through. I can relate. My DD, now 9wks old, was born with a undetected heart defect requiring surgeries as soon as she was born and then open heart operation at 2 days old. After having her, we came home finally when she was a month old. I feel ive missed out on so much and we still have appointments, medications, things which are 'there', but what scares me the most is that the operation procedure itself is only about 20 years old so there isnt any evidence of what the future will hold. The unknown scares the crap out of me. We have had so many choices taken away from us and many decisions made. It is so hard and to be honest my 4 year old DD has kept me going.

Your last sentence really hit home. I dont have anything i can say to make you feel better because I know the only thing that really can is if this was all a dream and we wake up with what we had 'planned'. All I can say is, I understand and you are not alone. Tk cr x

 

[Linny]

Im sorry for what you are going through. I can relate. My DD, now 9wks old, was born with a undetected heart defect requiring surgeries as soon as she was born and then open heart operation at 2 days old. After having her, we came home finally when she was a month old. I feel ive missed out on so much and we still have appointments, medications, things which are 'there', but what scares me the most is that the operation procedure itself is only about 20 years old so there isnt any evidence of what the future will hold. The unknown scares the crap out of me. We have had so many choices taken away from us and many decisions made. It is so hard and to be honest my 4 year old DD has kept me going.

Your last sentence really hit home. I dont have anything i can say to make you feel better because I know the only thing that really can is if this was all a dream and we wake up with what we had 'planned'. All I can say is, I understand and you are not alone. Tk cr x

Thank you so much, and I'm sorry for what you are going through too. I don't know why our little ones have to go through so much!

Big hugs and love to you, try to enjoy your beautiful baby between all the appointments and worry. I know it's hard but you are doing great mamma x x

 

[RachA]

I'm really sorry for what you are going through.

My lo's issues aren't life threatening but the fear of the unknown is what makes it all so hard. Plus all the appointments make things harder still.
The thought of the future can threaten to overwhelm me at times but I really have to remind myself that in the here and now I have a beautiful and happy little girl. It is really hard but you do have to focus on now because you don't want to look back and realise you've missed huge chunks of your lo's life. Between 2 & 3 years I can't actually remember much about my daughter because I was running round to appointments and focused on helping her rather than just being with her.

 

[Linny]

I'm really sorry for what you are going through.

My lo's issues aren't life threatening but the fear of the unknown is what makes it all so hard. Plus all the appointments make things harder still.
The thought of the future can threaten to overwhelm me at times but I really have to remind myself that in the here and now I have a beautiful and happy little girl. It is really hard but you do have to focus on now because you don't want to look back and realise you've missed huge chunks of your lo's life. Between 2 & 3 years I can't actually remember much about my daughter because I was running round to appointments and focused on helping her rather than just being with her.

Thank you for your reply. I already feel our first four months have been at hospital appointments rather than spending actual time together - also hard as I have another child who is feeling very much left out. Can't seem to do right by either of them!

I just started taking her to a music class when my oldest is in pre-school so that's actually been really nice.

I completely understand about the future feeling so overwhelming it's almost too much to think about, so I try not to. I do have my moments though and I break down. I'm hoping for some light at the end of all this, I hope there is for you too x x

 

[RachA]

That's good you are taking her to a music class-hope she really enjoys it.
I found that for a long time my son went to a few different after school activities (tennis, swimming, beavers) but Esther's 'fun' was at appointments like speech therapy and play sessions at the child development centre. I really wanted to take her to something that was just for fun but really didn't have the time.

I've been on this journey with Esther now for nearly 3 years so I guess I'm much more used to what's going on which gives me the ability to have a much calmer approach to it all. But I do still have lots of wobbly moments.

 

[Linny]

Yeah I'm glad I signed up for the class, not sure what she gets out of it but it feels good to focus on her in a fun way. I know other mums in the group probably see differences in her but I try not to focus too much on it.

We have a first community paed appt in two weeks and following that will meet a board of professionals to assess her needs. I guess that's when it all starts!

I'm beginning to understand that I will prob never get 'over' all of this, I will just adapt to it over time x

 

[HBGirl]

BIG hugs. My daughter was diagnosed with 22Q11.2 gene deletion syndrom at 5 months old. It hit me like a ton of bricks. She is trached and we have no idea what we will face. The only reason we take it one day at a time is because we have no damn choice but to do so.

It took away my joy for a while but when I realise her diagnosis doesn't change a darn thing, it got easier.

 

[Linny]

BIG hugs. My daughter was diagnosed with 22Q11.2 gene deletion syndrom at 5 months old. It hit me like a ton of bricks. She is trached and we have no idea what we will face. The only reason we take it one day at a time is because we have no damn choice but to do so.

It took away my joy for a while but when I realise her diagnosis doesn't change a darn thing, it got easier.

Thanks for your reply. I can't believe how oblivious I was to what other parents were going through before I had D. It's opened up a whole new world to me, and there is definitely joy to be found in the way these babies/children prove doctors and health professionals wrong time and again.

 

[Ramanie]

Hi Linny,

Very glad you are writing to the forum. I have a son with Cerebral Palsy. We did everything possible and it was not easy. Please keep your spirit up and do what ever the therapy there is from day one. There will be a light at the end of the tunnel. Will keep you in my prayers.

 

[Vampire Mom]

We became foster parents to Hannelore knowing something was off from drug exposure (cocaine and methadone), but had no clue to anything else. When the ER doctor caught something besides drug exposure, we got a lot of pressure to not keep her. We left anyone who suggested that behind. She was our child, no matter what.

We had months to quit. It was tempting some days because it's been hard.

But we didn't. Some days we don't move forward. Some days, just giving up on anything is the best we can handle. Because eventually we will level back out. But when all her various lists of what's wrong are highly variable, we don't know what we are going towards. So we'll take 3 good days because it's something.

Then it's just one hour at a time. I had to learn that as frustrated as I am, she's more so because she's stuck and can't fix the issue.

 

[Ramanie]

Hi Vampire Mom,
Sorry I took so long to reply. I think you are both very special couple and you have taken to foster a very special child. You are so courageous that tears come to my eyes. I know how hard the path is. But its worth it because you have taken this special little girl. I will keep you in my prayers.

 

[Amy_T]

My situation is different but I too worry about the future. We had some shitty news today, not life threatening but not great either. I just want my son to be happy, healthy and to be able to lead a normal life. I don't know if he'll ever be able to do that.

I was going to post something similar, as it stands my daughter by no means has a life threatening condition but has had issue after issue since I was pregnant (most of which we have no explanation for!) and sometimes I just wish we could go a while without any appointments or problems. BUT I often try to remind myself how much worse our situation could be, it doesn't always help or make things any easier but I look at the smile on her face and know things will be ok.

Sorry, not much help but I agree the not knowing is hard - try to concentrate on the postitives and enjoy the little lady in front of you.