I hope when more people read our stories they will see just how special children with Down Syndrome are. I know that it is an unmarked path that you are heading down but one well worth the journey. You are about to learn the meaning of true love.
Thursday, 17 September 2009
Max's Story
our story.... its a long one.
i guess it really starts back with my first baby, nick and i had a miscarriage with our first baby. so that pregnancy was short but still very difficult.
then my pregnancy with lilly we saw a specialist for her because they said she had two cyst on her umbilical cord, which can be the cause for many major health defects... Down syndrome being one of the good ones. so for over a month of lillys pregnancy i really was just scared for her life. when lilly was born the only health problem was two dislocated hips (at that time seemed like such a big deal.. only if i knew then what i know now.)
now onto max... i had bleeding in the beginning, and i thought that i was going to loose him too(like our first baby). they started me on some type of med to make it a "better environment" for him to live in. the bleeding stopped and i felt for a month or so that everything was going to be okay. we went for his 3 month ultrasound and they said he was measuring small. i didn't know what that meant...i felt like i was doing something wrong maybe his "environment" still wasn't good. we saw a specialist for that and we continued to see him every two weeks till max was born, with the test that he did, he didn't see any other physical characteristics of a baby with Down syndrome. besides the small size. i didn't see the point in having an amino test done due to the higher risk of miscarrying, nick and i both felt that either way this was our baby.. i could never abort my child, disability or not. the dr. also started my on a high cal. diet:( that's seems to still be with me today. when i was around 35 1/2 weeks i was having trouble feeling max move and my dr. was getting concerned due to his small size that their would be a higher risk for a still birth. just thinking that could have happened makes my stomach turn. well i had to stay in the hospital on bed rest for 2 1/2 weeks. it was really difficult since nick and lilly we're home and i would only see them once a day for a hour or so. we took a tour of the nicu because this whole time we thought max was going to be this little itty bitty baby. we were scheduled for a c-section on friday morning but max being max he came thursday morning 1:20 am Nov. 20. big surprise to my husband when i called to have come to the hospital "we're having a baby" in the middle of the night. it was all very exciting and scary at the same time. max was 20" -- 6 lb. 11 oz.
when max was born i was so sick form the pain medication i didn't get to have that instant loving connection that i had with lilly until 2 or so in the afternoon, i still feel really bad about that.
a pediatrician came in that morning and told us that they were going to be testing max for down syndrome, i was still so sick that it didn't really hit me what she was saying, after she left nick was holding him and started to cry (that was the only time i saw him cry for max) i could just say if max has Down syndrome, then that is who he is and there is nothing that could ever be wrong with that. the medications made me have no emotions, it didn't sink in till the they wore off in the afternoon... it hurt.
for the whole 3 weeks i lived at the hospital i only had one bad experience with a nurse, she came in the day after max was born and said oh i saw that you had your baby,(i was holding him) i said yes isn't he a beautiful baby boy! she responded "oh they told me that he has Down syndrome." i didn't know what to say..... i just said "yes.. but that doesn't mean he is not a beautiful baby." all i could think.., is that the way the world is going to treat my baby? (now,.. i know i was wrong)
we didn't find out about the test results till that wednesday, the day before thanksgiving. finding out was heartbreaking, i was sad for the dreams i had for my little boy and i felt bad for that, i felt i shouldn't be feeling that way, i should feel like what i told nick at the hospital. and its taken me till now to truly be okay with it, not that i don't cry every once in awhile because i would be lying if i said that. but i love him and lilly with all my heart, and i just want them both to be happy and health. and we really are blessed with that, besides a low white blood cell count for max, my children are happy and health. i know how lucky we are, i don't take that lightly.
life has for me as a mother changed the day max was born, i feel like i have become a much more compassionate person. less judgemental of things i do not know or understand. i am able to see some of the things i feared at first for max was just due to being uneducated on Down syndrome.
i thank max for my life now, without him i would not be the person i am today. i would not know or have met the families i have come so very close to.
one of the luckest moms in the world,
sara
http://lifewithextras.blogspot.com
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Thanks for sharing your story. I'm afraid that will not be the last time someone will hurt you with their words concerning your child. He is beautiful. Absolutley beautiful. Congratulations.
ReplyDeletei just waned to thank you again for posting our story, im so happy to be a part of your blog, its a great place for other new moms and dads to see even though they are more then likely having so many feelings... they need to look at the big picture, our children are blessing, wonderful and amazing... all children are.
ReplyDeletethe big thing is that they are not alone in this. so thanks again to you for letting us share maxs story:)- maxs mom