Thursday, July 5, 2012

Bloom

Today was a very much anticipated day. Today was a day we had waited 8 weeks to arrive. You would think that, after two pregnancies and having to wait that gestational period, that 8 weeks would seem like nothing. For 8 weeks we had processed, stressed, worried, cried, anticipated, researched, discussed, prayed, mulled over, and much, much more. For 8 weeks we had worried about a number of different scenarios knowing that today we would have some answers. We wouldn't know all the answers, but we would know some pretty definitive things.

Today we found out our Baby Raptor has 47 chromosomes. Today we found out that Baby Raptor has three chromosomes on his or her 21st. Today we found out Baby Raptor has Trisomy 21. Today we found out Baby Raptor has Down syndrome. It is so odd to say...it is very, very difficult to say. Matt and I agree that it is a very different story to go from this being a theoretical to this being our reality. This is true about our baby. Period. This is real. This is no longer a "might be happening" and has turned into "this is what we know". I would be lying if I said I wasn't hoping for something different. I would be lying if I said I was able to hold it together for more than about 5 minutes in the Doctor's office before I started crying. It isn't what I expected to hear. We obviously were trying to prepare ourselves to hear that Raptor has Down syndrome. We even went over and over in our heads what it might sound like to hear our Doctor tell us "Baby has Trisomy 13", "Baby has Trisomy 18", "Baby has Trisomy 21", "Baby has some other genetic issue", or "Baby has nothing we can see". We forced ourselves to make sure we knew each of these things was a possibility. But even though we knew that our biggest chances were Trisomy 21 or nothing at all, we were both really pulling for nothing at all. We were both really wanting and maybe even expecting to hear that all testing came back normal. After all, besides the nuchal translucency/nuchal fold measurement, everything looked perfect on all of our ultrasounds since then. Even today, the nuchal fold looked much better in range, our Echogenic Foci (spot on the heart) looked less bright, and all measurements were within days of being spot on perfect with our due date.

Despite all of our preparedness and telling ourselves not to get our hopes up, we had. So we were both let down and we are both pretty overwhelmed by today. There is definite sadness in today, this is not what we had set out for in our journey, but we have been reminded lately by 3 or 4 different situations that we cannot pick and choose what happens with and to our kids. We have also been reminded that things could be a lot, a lot, a lot worse. We actually feel very convicted with that, as someone we know is going through something very difficult and very different from T21. So we are thankful and grateful beyond measure that Baby Raptor looks really healthy, almost out of the ordinary healthy considering the diagnosis. There is still that sadness though...we aren't sure what to expect...and will not know a lot about what this baby can and cannot do until after they are born and in some instances way after they are born. I think a lot of what we are feeling is a release of all of that anticipation that has been building for the past 8 weeks (not to make too light of the situation, but I think I am going to sleep really well tonight).

I expect that we will be sad for awhile longer. I expect that there will be moments throughout Raptor's life that we are sad about this extra chromosome. I expect that there will be times that we are really, really angry about certain things that are beyond our control. I expect that there will be times that we feel that this is way more than we can handle and that we won't be sure of exactly how to proceed.

We still have some immediate hurdles to overcome. I have a very important appointment on Monday to look at Raptor's heart. I obviously pray and hope that the heart is perfectly functioning and normal. Not only do I want the heart to be normal because I want Raptor to be healthy, but I really, really want to stay with my Doctor and to deliver at my hospital. I will of course switch wherever we need to and rejoice that we have such good hospitals at our disposal, but if I can be a little selfish right now (and I think I can be), I really want to stay put! A normal echo on Monday means that as far as labor and delivery goes, everything can proceed as normal, which sounds really great to me. It means that Matt can cut the cord, Raptor can be placed on my chest immediately, breastfeeding shouldn't be a problem, and that hopefully no NICU space need be allotted for us.  Furthermore, we have a lot of extra monitoring that will take place to make sure that baby is growing well, that my fluid levels are normal, and that my placenta is nourishing like normal. There is still a good deal of risk for complications associated with Down syndrome later in pregnancy so we are prepared for cautiousness.

After a few days, I will be ready to move forward, I think. I will be ready to Bloom. I borrowed that from the title of a wonderful book written by Kelle Hampton. She found out at birth that her daughter, Nella, was chromosomally enhanced with T21 and is one of the Down syndrome blogging "rock stars". If you have time and want to read a very emotional birth story please do so here. The way she talks about Nella wanting love and her older daughter showing unconditional love and pride in her little sister spoke volumes to my heart. I found a lot of comfort and pearls of wisdom from her blog and book and hope to glean information from her writing in raising all three of my kids. I am currently latched on to this quote said by her sister Carin when she came to see Nella at the hospital- "I want you to picture some hypothetical person in your mind- someone who handled Down syndrome exactly like you wish you could. Now go and be that person. Rock this out, rock it out and show the world another way." I really, really want to do right by this kid. I don't want him or her, or us, or our family, or our girls to be pigeon holed into some preconceived idea or misconception about what we "should" be like. I just want all of us to show each other what we are capable of. I know it's going to be hard, and challenging, and difficult, but I want to do what is best for all of my kids and so I am going to fight my hardest to make it happen.

Yes, I am sad now...but we got the testing done early so we could move past that. So sadness now and ecstatic happiness that Baby Raptor is gleefully kicking away as we "speak" and is either poking or using my bladder as a trampoline just to make sure that Mommy knows who is boss. And soon it will be all (or mostly) happiness peppered with struggles...at least I think so! We are beyond thankful to God for so many blessings in our life and we continue to thank all of our support network for the amazing job loving us and Raptor even when we didn't feel so worthy of love. I can really and truly say today that I love Baby Raptor and cannot wait to snuggle and cuddle him or her.

5 comments:

The Marin Family said...

What a wonderful quote you pulled out! I know that's exactly you will do too because that's pretty much your life attitude! Every parent wishes only for their child to be perfect so I know this is devastating news, but I'm positive that Raptor will be "perfect" in many ways and we can't wait to meet him/her!!

Regina Payton said...
This comment has been removed by the author.
Regina Payton said...

He or she is perfect in God's. Things happen for reasons we don't understand, but life has it's ways of blessing us in so many situations. I know you, Matt and the girls will embrace this with all the love you have and with God's grace. You have family and friends that love you, and because of that, will love your new addition no differently. Can't wait to meet this little gift.

Beth said...

My heart goes out to your family with this news, I know with even all the preparing you can do, it still must be a shock and something to adjust to. I've never had a child with down syndrome, but my "adopted" family's last child has it (he is now 20), and I have worked with plenty of other children with it too. What I can almost guarantee you is that your sadness will turn to joy in the coming years. They are the most loving, sweetest, and forgiving spirits God puts on this earth. They teach us patience and how to love in the purest way and every family I have met that has a child with down syndrome has told me that child has been the greatest blessing to their family. I believe that when this life is over and we are made whole through Christ, these special spirits will have full mental capacity again and will especially thank their parents and loved ones for the patient care they were given. Our prayers are with your family at this time as you process the information and prepare for your little one. I don't know you personally, but from your blog know that you are an amazing mother! God bless your family!

Beth said...

I wanted to also share this with you, in case you have not come across them. My last year of teaching we had a 12 year old with down syndrome whose parents had discovered the National Association of Child Development program. The work they did with this little boy was amazing in helping him reach his capacity and even expand it. They also didn't take him out of the classroom, but helped him become part of it and become friends with the other children. They start working with children from infancy clear up through adulthood, helping both with the children and educate the parents how to work with the special needs. When you are ready to look through it, and if interested, their website is here: http://nacd.org/ , with a link taking you to a section on down syndrome. I hope I am not imposing by sharing this, it's just a program I've seen help a LOT of children during my teaching years and I try to spread the word about it.
~Beth
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