Sometimes you try so hard to stay positive about stuff that all of the negative or sad feelings you have build up and decide one day to just all come out. I hit one of those days.
Wednesday night we met up with a couple for dinner. The guy has a sister with Down syndrome and they thought it would be worth meeting us to talk about Down syndrome. It ended up being a big mistake. The guy doesn't even get along with his sister. He talked of her like she was nothing to him. I don't think he said one positive thing about her. It left me feeling angry. Didn't he realize his words were supposed to help us? That I only needed to hear good things?
Also, I'm just not ready to think of my girl as having difficulty with anything. I am only able to think of her as my BABY. I am not able to read much information on Down syndrome, or think about her schooling, or other issues she may have, because right now she is perfect. She could be like any other baby girl. She could go to college. She could grow up and get married and have children. She could be a doctor. I guess I'm not ready to face reality at the moment but I know I will have to as she grows up. I just need time to adjust.
Yesterday, we also found out Rachel lost weight. She was so close to 4 pounds. I was so ready to hear the nurse say that she gained and hit 4 pounds. But instead we walk in to a 60 gram loss and the news that she needed a red blood cell transfusion. Another needle stick and wire to deal with. Awesome. I just lost it. Everything that has been going around in my head needed to come out and it came out in tears. Poor Stephen had no idea what was wrong with me.
I cried for her weight loss, for her future, for all the tubes and wires on her body, for the callous comments of the night before, for our future children and their increased chances of Down with every year we wait and selfishly, for myself. This new world I am living in wasn't what I thought of while going to sleep at night during my pregnancy. Some days I still wake up thinking this is all a dream, that I'll still have that normal birth and a baby to bring home right after. I am angry and I feel cheated out of Rachel's birth. I never got to hear her cry or hold her. There is part of me that grieves for that lost life. I hate how that sounds though and I am taking a chance putting those feelings out here because it sounds like I don't care about Rachel and that simply is not true. I am so happy that she is here and is our baby. I couldn't see our lives without her in it. Someday, I will be able to wake up in the morning, walk to her room and hold her without worrying about wires or hearing the constant beeping and dings from all the machines and that is what keeps me going.
Wednesday night we met up with a couple for dinner. The guy has a sister with Down syndrome and they thought it would be worth meeting us to talk about Down syndrome. It ended up being a big mistake. The guy doesn't even get along with his sister. He talked of her like she was nothing to him. I don't think he said one positive thing about her. It left me feeling angry. Didn't he realize his words were supposed to help us? That I only needed to hear good things?
Also, I'm just not ready to think of my girl as having difficulty with anything. I am only able to think of her as my BABY. I am not able to read much information on Down syndrome, or think about her schooling, or other issues she may have, because right now she is perfect. She could be like any other baby girl. She could go to college. She could grow up and get married and have children. She could be a doctor. I guess I'm not ready to face reality at the moment but I know I will have to as she grows up. I just need time to adjust.
Yesterday, we also found out Rachel lost weight. She was so close to 4 pounds. I was so ready to hear the nurse say that she gained and hit 4 pounds. But instead we walk in to a 60 gram loss and the news that she needed a red blood cell transfusion. Another needle stick and wire to deal with. Awesome. I just lost it. Everything that has been going around in my head needed to come out and it came out in tears. Poor Stephen had no idea what was wrong with me.
I cried for her weight loss, for her future, for all the tubes and wires on her body, for the callous comments of the night before, for our future children and their increased chances of Down with every year we wait and selfishly, for myself. This new world I am living in wasn't what I thought of while going to sleep at night during my pregnancy. Some days I still wake up thinking this is all a dream, that I'll still have that normal birth and a baby to bring home right after. I am angry and I feel cheated out of Rachel's birth. I never got to hear her cry or hold her. There is part of me that grieves for that lost life. I hate how that sounds though and I am taking a chance putting those feelings out here because it sounds like I don't care about Rachel and that simply is not true. I am so happy that she is here and is our baby. I couldn't see our lives without her in it. Someday, I will be able to wake up in the morning, walk to her room and hold her without worrying about wires or hearing the constant beeping and dings from all the machines and that is what keeps me going.
Awh Mags...I'm so sorry about the sad time you're having. I can't imagine what you're going through but know that it will all be ok. God had a plan and he totally knows what he's doing. He knows you and Stephen are strong, loving people who will stay positive (with the obviously normal negative days too) and who will love Rachel for the sweet, beatiful woman that she will become. Try not to get discouraged, your baby girl will accomplish everything in life that you want her to, I'm positive about that!!! Take care, get some rest, and hold that beautiful baby of your as long as you can!!! Talk soon!
ReplyDeleteLove,
Ky
I got to your blog thru a friend. I have been reading your posts and believe me, you are a very strong person. I admire you for being there for your daughter, for waking up everyday and try to give the best of you for your daughter and husband. Yes, it is tru that she has a lot of wires but God is with you all and sooner than later you'll be able to take her home, hold her, spoil her. I agree with you. You don't need to worry about Down Syndrome right now. There are other priorities. Keep the faith. You all are going to be ok. I just wanted to let you know that I admire your courage and you have all the right to cry and be mad, that is Ok. You also need to let your feelings out, get everything out of your system and get yourself together to be strong for Rachel. Just keep going and have faith. Everything will be fine. And don't worry. People who know you know how much you love your daughter. You don't need to apologize. I'll keep you in my prayers.
ReplyDeleteYou have every right to feel the way you do! It is hard and even harder to be hit with unexpected news. But she is perfect- she is an angel! She is so precious!
ReplyDeleteI know it is hard but she will come home without the monitors and no more beeping!! Rachel is in my prayers everyday!
I got my card and it is precious! Wow!! I can't get birth announcements out yet!! LOL
i agree with you 100%. Screw that guy!v Kids with down syndrome are kids first. I work with kids with devleopmental disabilities and most kids with DS do not need our services. So, yes, she can go to college. She can do anything!
ReplyDeleteI know this is a lot to deal with, and it sure takes a tough momma... I am going to pray that you find healing through this. Keep your head up!
ReplyDeleteMaggie, I have an amazing little 8 year old boy with DS who was in the NICU at Women's and had duodenal atresia repaired at 3 days of life. He is a happy and healthy boy who is incredibly bright and engaging. Please don't despair we have all had the sad days, they get fewer and fewer as you fall deeper in love with your child. Once the medical complications pass it gets easier. Hang in there. I would love to talk and meet you. I heard from a dear friend that you may be at Mom's night out tomorrow night?? I hope to meet you then. Diane Kroeger email: dkroeger@triad.rr.com
ReplyDeletehi Maggie, This is Sue Fischer (Young), a friend of your mother. When you have a chance, please Email me. My youngest daughter was also born with problems at birth - we had no idea there would be problems, until she was born. I understand many of the feelings that you mentioned - I'd just like to try to give you some encouragement, and someone to talk to who understands. I hope to hear from you.
ReplyDeletesueroo@adelphia.net
Rachel is beautiful !
Sue
{{{{{Oh Maggie}}}}}} Please don't feel bad for articulating what every single NICU parent feels.NICU parents have much to grieve. Whether it's the perfect pregnancy, idyllic birth plan,anomalies,alarms and machines and medical terminology that makes your head spin for the first week, being discharged from the hospital with a baby in your arms,picture perfect health. When you look at some of those things you will see that you have been dealt at least a triple whammy, so allow yourself those thoughts as it will only make you a stronger advocate for Rachel.NICU life is often one step forward,two steps back, and in the grand scheme of things, she is doing beautifully,especially considering her obstacles.She'll get to fighting weight soon,and postoperatively you may find that she gains at the speed of light and will be home in the blink of an eye.Allow yourself to be nurtured as you are doing for Rachel. I see you rocking her in her picture perfect room in no time. Hang in there.~~~~~~~~~Dutch
ReplyDeleteMaggie, it's not even the tiniest bit selfish! You get to mourn for the loss of those hopes and dreams and the life you thought you'd have (and in fact, I'd say you have to). It is no reflection on how much you love her or how grateful you are to have her. Anyone who reads otherwise is an idiot. ;)
ReplyDeleteLolo
Oh Maggie. Hugs to you. You have been so strong. Sometimes, you just need a melt-down. It always makes me feel better. She IS perfect just the way she is. She will be home soon & you can cuddle her all you want. Soon she'll be chasing Jack & Dizzy around the house & making you laugh. Just hold on to that. Love ya! Melinda
ReplyDeleteMaggie - I understands your feelings and tears. I can only imagine all the emotions that you are feeling right now. My Mom kept a quote near and dear to heart on a sticky note that she always carried with her - "God never gives us more than we can handle." Everytime I think I am at the end of my rope and cannot possibly handle anything else I remember that quote and can I can still hear my Mom telling me that everything will be okay. We can only take one day at a time, one moment at a time, and one step at a time. So for now, hold precious Rachel and only think of this moment in time. Don't stress over the tomorrows that will come, just concentrate on holding and loving Rachel Jane. That will make the biggest difference for you and her!
ReplyDeleteDiana
PRONC
You have the right attitude stick with it! Love you guys and we are here for you all!
ReplyDeleteMaggie,
ReplyDeleteI am a friend of your Mom's. I pray for you and your precious little girl. Stay strong, and if you have days where you need to cry, go right ahead. Hugs to you and Stephen and a big HUG to Rachel. She is beautiful and absolutely perfect! I can hear your love for her in your words, you have touched my heart! God Bless. Lauri Lewis
Maggie, don't feel bad for any of it. There's not a person alive who wouldn't have those thoughts and I can't imagine anybody having half the aplomb you do.
ReplyDeleteAs for Rachel's future, I truly believe she'll have almost if not all the same opportunities as any other kid. She's amazing already... I can't wait to see what lies in store for her.
Thank you for sharing! You are in a lot of folks prayers and well wishes. Your honesty is refreshing mama.
ReplyDeleteMaggie, one of the women in my condo has a downsyndrome grandson. He's 19 and lives with his girlfriend (she also has DS). They talk of marriage and their future. Your feelings are natural and yes, you may have a harder path than some... but you will make it to the same place. Just a little more work and love needed. Stay strong.
ReplyDeleteMichele
Maggie, please know that nobody said it was easy! and you have every right to feel anger and frustration...
ReplyDeleteHowever, please keep in mind also, that God only puts angels in the lives of those who can really handle them...
I talk from experience.. Like I told you once, I had a sister with mental retardation, and although I gotta say that it was tough, she was an angel in our lives... After she passed away, my life just changed.. and it hasn't been the same ever since.. because she was my reason to smile every day.. and that's what little Rachel will always be for you!
Love,
Adriana