My baby is six years old. Wha?!?!

Yesterday was Corrigan’s 6th birthday and boy did he enjoy his day!   What a change from years past, when birthdays didn’t register in any fashion to his little brain and the stimulus would often cause meltdowns.  He knew it was his birthday the moment that he woke, which absolutely surprised us. We had been talking about his birthday in order to help him understand the concept for days, like we must do for everything, and Mark told him at bedtime the night before that in the morning he would be six years old, but neither of us expected him to remember.  But alas he did, and we were thrilled!

He enjoyed mini-cupcakes with his classmates during the school day and I prepared a little party for him while he was gone.   I made him a large poster for the front of the house after seeing how much he loved the one that I made for Connor earlier in the week, cheering him on at the State Track Finals, so I made sure that Corrigan had his own sign (and balloons!) when he got off of the bus. He saw them the moment the bus pulled up in front of the house and he was out of that tin can like his butt was on fire!

Forget using the handrails and forget my backpack mom.  There’s bawoons!!!!

6th bday 6

Corrigan is still so easy to please, loving balloons, bubbles and birthday accoutrements just as much at age 6 (!) as he did when he was much smaller.  I had thought about a “theme” because each of Connor’s birthdays had a theme, or character, on the party supplies but Corrigan loves rainbows and colors more than Jake the Pirate or Monsters Inc. so I stuck to what he liked most.

6th bday 5

 

6th bday 4

His favorite part of anyone’s birthday is the singing, but being sung to is the highlight of his life now. A far cry from the earlier birthdays when hearing a group sing Happy Birthday was too much for him to bear and he would become inconsolable.  We sang it several times, and we taught him the “you look like a monkey and you live in a zoo” version earlier in the day so we were obliged to sing that version as well.  He just sat there, proud as a peacock, grinning and laughing, while we all sang.  Have you ever sang a song and you could hear the smile in your voice? I smile-sang all day long.

6th bday 3

He was not interested in his birthday cake much this year, but he did wake this morning asking about it.  The taller candles made him nervous,  so he wouldn’t get close to blow them out, lesson learned on that front.  Sometimes new things, like considerably taller candles than usual, are enough to send him into his shell, but he pushed through and coped by just ignoring his cake mostly.  Which is totally fine, I am proud of him for choosing that way to handle his anxiety, rather than freaking out or sobbing.

6th bday 1

He was gifted many nice things, including a Corrigan-sized swimming pool that I’m sure I won’t be able to keep him out of this summer.  Which is another testament to his progress, a few years ago the thought of a body of water near my house would make me panic, he was so untrustworthy around such things but not anymore.  And it doesn’t hurt that the pool is only 30 inches deep, rather than something over his head.

He did a great job opening presents without assistance and without getting quickly frustrated when the wrapping paper didn’t come off smoothly.  We really noticed how hard he worked at containing his emotions this year and we are so proud of him.

6th bday 7

You know me, I had to compile photos from each birthday to share and I am struck by the lack of “light” in his eyes when he was younger compared to the last two years.

6 years of birthdays

 

We really lost our little boy to his brain injury those first few years and feared we would never see that “light” in his eyes.  He was so withdrawn, anxious and unconnected from those that loved him so much, for so so so long.  I cannot even convey to you the absolute gratefulness in my heart for the emergence of Corrigan’s essence.  That “spark” that makes him who he is, that allows him to laugh, to enjoy and to feel things more as you and I do, instead of pulling inward,  confused and fearful of the world around him.  Time, patience and the dedication of his teachers and therapists have pulled Corrigan out from his shell, slowly but surely, and I believe that you can see it in photos like this one… (click to view larger)

grandmas kisses

I can tell you that, four years ago, I never thought these kind of interactions would ever occur.  He was not affectionate nor did he care for it to be heaped upon himself.  Eye contact was near zero, though I could fake the appearance of it by waiting patiently and capturing it on camera.  What I see in the above photo is amazing. Astounding, really.  I see a little boy who saw his Grandma and was thrilled.  Recognition.  I see how excited he was that she was approaching him.  No anxiety.   I see the way that he is looking at her. Prolonged eye contact.  I see that he knows what to do and wants  to do it, and it is a natural response, not in any way coached.  Love. Affection.   I see that the moment she touched him his hands relaxed.  Safety.   I see so much in five little frames, I see a world of possibilities. I see progress.  I see that spark. I know it was Corrigan’s birthday but seeing these photos with Grandma is such a gift to me.  Clearly, her love is a gift to him.  He is such a lucky boy to have so many people that care for him so much.

You can look back on all of his birthdays by searching “birthday” in the search box on the right side of the blog, he really has changed so much!  I did want to share my post that I wrote for his first birthday HERE.  I invite you to read it and look at the photos. I rarely go back and read my earlier posts, they are too fraught with fear and I am not far away from those same emotions really, all of these years later, so I avoid them to keep myself stronger but my boy is amazing. So brave. So strong. Such a survivor.

We love you, Corrigan!  May year six be the jumping off point to which you soar in all that you endeavor. We are so proud of how far you’ve come and cannot wait to see just how much you change in the next twelve months!  Happy Birthday, sweet boy!

 

14 thoughts on “My baby is six years old. Wha?!?!

  1. Happy 6th birthday corrigan what a hero, I, m new to the world of citrullimenia my gorgeous nephew/godson was born 3 weeks ago and diagnosed 72 hrs later.I, m trying to learn everything I can to help my brother and his partner, your blogs are truly inspirational.

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    • Hi Angela! Congratulations on the birth of your nephew- what a blessing! Thank you for stopping by and for commenting. If you have any questions, or just need to talk, please feel free to email me at any time at mindy.mooney@gmail.com or mindy411@hotmail.com I am always happy to chat! Thank you again for reading, I am so glad that the blog is helpful!

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  2. Thank you mindy how kind of you, I, ve given your email to my brother jason and his partner tina theyre still in the hospital with baby joe they live in liverpool england 10 miles from the children, s hospital so a lot luckier than some , will certainly keep in touch thanks again for your time xxxx

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    • Angela,
      I have a few contacts on your side of the pond, you’ll be happy to know you are not alone over there! We also have the National Urea Cycle Disorders Foundation here in the US but they are available for resources and support for families all over the world! You can find more information at http://www.nucdf.org The Director of the Foundation is Cynthia leMons and she is one of the very best resources for any new family. She is always available at cindy@nucdf.org as well. I do believe that there is a FB group for metabolic disorders in the UK, but there are also several support groups on Facebook that contain members from all over the world! Simply search “Citrullinemia” or “Urea Cycle Disorders” on Facebook and you’ll see most pop up. They are closed groups and private, so you’ll need to request an invite. The NUCDF also runs an informative VERY private and safe page called REACH UCD but you have to request admission through Cynthia (we call her Cindy) at the email I shared above. Also, on the right side of my blog there is a list of UCD blogs and other metabolic disorder bloggers. Treatments are a little different over here than in your area (and the rest of the world, really) but the support that we all need knows no country boundaries and if I can help in any way, I’m always happy to do so. This is a scary thing to face, for sure, but not un-doable and with support you will find it much easier to navigate everything. Again, I am always available!

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    • Angela, if you wish to speak to someone closer to you and your family, Emma Peterson is in Hemel Hempstead(sp), her daughter Olivia has ASA (not Citrullinemia) but the two disorders are treated pretty much the same, with a few differences. She asked that you, or your nephews parents, feel free to email her at emma.peterson76@gmail.com. Olivia is doing beautifully, by the way, if you want to read more, her story is on the Great Ormand Street Hospital blog here: http://blog.gosh.org/patientsandparents/olivia/ Emma would be a wonderful resource too!

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    • Angela, Emma has asked me to pass along this link as well. I am sure the Children’s Hospital already gave you the information, but there is a group that you may find VERY helpful in that they support families with inherited metabolic disorders in the UK. Your brother and his partner may feel more comfortable reaching out to an established group first before individual families. That information can be found here: http://www.climb.org.uk/

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  3. Thanks mindy been hospital today joe is doing so well he may come home thursday will pass all info to my brother and partner his ammonia levels were 2000 hes a miracle baby xx

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  4. I know the dialysis machine sorted him and up to know levels are 16 they told us to expect the worse but thank the lord he proved them wrong, went on to have blood clot in leg , anemia but has made great recovery , we, d have 2 good days then a bad day hopefully the good days will outweigh the bad ones xx

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    • Hi Jason! So nice to “meet” you! Congratulations on the birth of your sweet baby boy! Corrigan’s highest ammonia was 784, so far as we know. That sample did sit for a bit before processing, and was delayed because he was flown to Baltimore while waiting for its return, so it is not a “verified” number but it was in the 600’s and climbing when they ran the blood and it came back in the upper 700’s, so it was likely very close to accurate. Keep in mind that, while no high ammonia is “good” for a brain, it is not necessarily how high the number reached so much as how LONG it stayed at that number before it was brought back down. We know children whose ammonia was well above 1500 (which is a catastrophic number, for sure) who are far better off, developmentally, than Corrigan and he “only” had a 784. That is because when he was first showing signs of illness, he was sent to a University hospital who did not notice the elevated plasma ammonia and for three days he laid as his brain was bombed by ammonia and other toxins. Others who were diagnoses quickly and received very fast interventions, their numbers may have been far higher (as I believe your sister said Joe’s were) but the outcome not as devastating as Corrigan’s case because he did not get the rescue interventions in a timely manner. How is your boy today? Will he be ab;e to come home soon?

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      • he home thanks which made me abit scare but b ok hope corrigan good he look like a lovely boy thank u for email is all new to me so just trying find some things out but the best i still got my joe and love him so much anyway thanks jay

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