It is amazing to me that of the 636 paediatric heart operations SickKids performed in 2013, 4 of those were on my son. 3 open hearts and one pacemaker implantation. Forever indebted to SickKids.
My social media life has been focused on Congenital Heart Defect (CHD) awareness since the beginning of February. It has monopolized my Facebook, Twitter and blog postings because I want the masses to know about this monster and to catch a glimpse of the battles my baby boy has overcome and is fighting daily. I have even taken part in a small interview for an article to be posted on the local health authority's blog. At the beginning of the month I was overwhelmingly excited for this opportunity to connect and share with other Heart Moms and everyone who cared enough to read my post or click a link! Now we're getting towards the middle of the month and I'm not quite so excited any more.
I'm proud to be a "Heart Mom" and I sometimes submerge myself in any and all related news articles, blogs, statistics, research reports and so on. This is my first February/Heart Month as a mother to a baby with a CHD, so I welcomed the barrage of information and other families that I could relate to. With the good stories and improving statistics also comes the negative side - stories of babies and children who have lost their fight with CHD, blogs and articles written by Moms and Dads who want desperately to raise awareness for their little fighters or CHD angels who have already passed on, the statistics, words and phrases like "no cure" and "palliative care" which it turns out that I am not the only parent hearing in reference to their child. It's a scary world out there on the internet for parents who seek understanding and information in relation to their sick child. All of the information that I am finding is laying a heavy weight on my heart this month. I have said this so many times to people who look at Jake pityingly when they hear his story, and I will say it again now. Jake is perfect to his family, and none of us would change a second of the sadness, stress and fear if it meant that we would no longer have Jake in our lives. Do I want Jake to be healed? YES! And I want to give him the opportunity to be happy and live his life for as long as he can - whether that is 5 years, or 100 years, and raising awareness is one of the ways that I can strive to make this happen.
One of my biggest secret fears as a Heart Mom who believes in the healing power of God is that Jake has not been healed because my faith is not large enough or strong enough. I have doubted, and I have had moments when I felt too overcome with pain and sadness to talk to God about it, and there is a significant part of my heart that wonders if that is the reason that Jake has not been given a whole heart by some miracle. It's hard for me to even type that, much less share it with the world. Maybe by sharing it I will be able to relieve some of the burden on my own heart - it's a hard conversation to have with anyone and especially with God.
Here's a photo of myself and Jake waiting for the technician to come and draw his blood to check his Anti Xa level...Jake was all smiles until that needle was rooting around in his arm:
While we're on the topic of blood, do you know that Jake has had at least 10 blood transfusions in his life so far? I say at least because we are unsure how many transfusions were given during his Norwood and Glenn procedures. A stat from the Heart and Stroke foundation's website says that five donors are needed for the blood required for an open heart surgery. I have watched Jake lie in a hospital bed and be incredibly sick, and then receive a blood transfusion and within 24 hours he has made an amazing recovery. So I'd like to challenge those reading this post. If you are physically able, and there is no medical reason for you not to participate, will you consider making an appointment with Canadian Blood Services to donate blood during Heart Month? Appointments can be made online at www.blood.ca . I wouldn't ask you to do something that I am not willing to do myself - I will be donating blood next week, and will post a picture when I make it happen. Donate blood and let me know, and I will keep a tally of how many have given blood in Jacob's honor. I'm setting a goal of at least five donations - enough for one open heart surgery patient. Two of those are taken care of, between myself and my Dad - who else is willing to help out?
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