I am sit­ting in the li­ving-room of a hou­se that is not ours, a hou­se where we are on­ly sta­ying tem­po­ra­ri­ly. I will try to ver­ba­li­ze even a small part of what we have ex­pe­rien­ced over the past few weeks. Our baby was born and is still ali­ve. It is a mi­rac­le! This lit­t­le one has ex­pe­rien­ced more hards­hips du­ring the first weeks of her life than most of us ex­pe­rien­ce du­ring our li­fe­ti­me. It has been a time of up­he­a­val for our whole fa­mi­ly.

As I men­ti­o­ned in a pre­vi­ous blog post, our baby was pre­na­tal­ly di­ag­no­sed with a lar­ge tu­mor. But we could ne­ver have ima­gi­ned the true scale of things. When the baby was born, we were told that the tu­mor was much lar­ger than ex­pec­ted. It weig­hed more than the baby her­self and had spread to in­vol­ve her spi­nal cord. We were al­so told that the baby could not move her legs. She had to be air­lif­ted im­me­di­a­te­ly to Hel­sin­ki for sur­ge­ry. We had all this in­for­ma­ti­on on the day fol­lo­wing her birth. That Tu­es­day was full of bad news.

Be­fo­re the baby was mo­ved to the big­ger hos­pi­tal, we had a simp­le bap­tism in the pe­di­at­ric in­ten­si­ve care unit. The ce­re­mo­ny was ext­re­me­ly sad and touc­hing. Our tiny girl was lying in her hos­pi­tal cot sur­roun­ded by tu­bes and wi­res. The bap­tis­mal gown had been spread over her body like a blan­ket. We stood there stun­ned. We sang and cried and loo­ked at our dear baby.

Af­ter the bap­tism we had to say good­bye to her. That was one of the har­dest things in my life. We knew it was qui­te pos­sib­le we would ne­ver see her ali­ve again. We told her how much we lo­ved her. We whis­pe­red in­to her tiny ears: “You will make it. We are sure you will make it.” Though we were overw­hel­med by grief, des­pair and pain, we ma­na­ged to get on with our li­ves en­cou­ra­ged by the fact that the child was still ali­ve.

On Wed­nes­day the tu­mor was sur­gi­cal­ly re­mo­ved, with the ex­cep­ti­on of the part in the spi­nal ca­nal. My wife and I were wai­ting for the news in the hos­pi­tal. It is dif­fi­cult to desc­ri­be our fee­ling when we saw the sur­ge­on’s phone num­ber on the screen. Mi­ra­cu­lous­ly, our baby had sur­vi­ved the sur­ge­ry. Re­lief fil­led my whole body. The tiny figh­ter had not gi­ven up!

On Fri­day, ho­we­ver, the sur­ge­ons had to am­pu­ta­te her left leg. More than a week la­ter, while our fa­mi­ly were again dri­ving to the hos­pi­tal, we had furt­her bad news: The tu­mor was ma­lig­nant. There would be can­cer tre­at­ments ahe­ad.

It is ea­sy to un­ders­tand that the past few weeks have been more shoc­king than anyt­hing in our life so far. It is simp­ly hor­rib­le to be af­raid eve­ry day of lo­sing our child. It has been ext­re­me­ly stres­s­ful to have more and more bad news. It has been so sad not ha­ving been ab­le to take care of our baby for weeks. For­tu­na­te­ly, we are slow­ly re­gai­ning our pa­ren­tal role. But we do not know yet when our baby can be mo­ved to the hos­pi­tal clo­ser to our home – and we have no idea of when we can bring her home.

There are ti­mes when I feel we are li­ving in a stran­ge night­ma­re that seems to ne­ver end. Over and over again the sce­na­rio ”it is ext­re­me­ly un­li­ke­ly” has be­co­me re­a­li­ty. The on­ly thing for us has been to ac­cept the si­tu­a­ti­on.

These weeks have made me qu­es­ti­on of pur­po­se of all this. Why has she, the tiny, in­no­cent baby, been al­lo­wed to suf­fer so much? Does God see how much we as pa­rents are suf­fe­ring? Up till now we have been gi­ven the strength to go on, and we be­lie­ve we will be gi­ven enough strength even in the fu­tu­re.

This cri­sis has al­so gi­ven rise to many be­au­ti­ful things. We would not have ma­na­ged wit­hout the help of ot­her pe­op­le. It has been touc­hing to ex­pe­rien­ce the abun­dan­ce of love, prac­ti­cal help and fi­nan­ci­al sup­port from our fa­mi­lies and friends. Our wel­fa­re so­cie­ty has al­so shown its ex­cel­lent abi­li­ty to pro­vi­de for our baby and to sup­port us in many ways. We even found tem­po­ra­ry ac­com­mo­da­ti­on near the hos­pi­tal very quick­ly with the help of friend­ly pe­op­le. We have cer­tain­ly not been alo­ne!

We be­lie­ve that all this has a pur­po­se that now re­mains hid­den to us. We know that our baby’s life has al­re­a­dy been sig­ni­fi­cant. It has spo­ken to pe­op­le, made them pau­se and con­nect with ot­hers. It has taught us to ap­p­re­ci­a­te things that used to be self-evi­dent and to love our dear ones even more.

This jour­ney is on­ly at the be­gin­ning. We have no idea what will be ahe­ad of us. No doubt there will be many comp­li­ca­ted tre­at­ments and nights in the hos­pi­tal. But I am sure there will al­so be a lot of ho­pe­ful­ness, joy and hap­pi­ness. I am al­re­a­dy loo­king for­ward to the hap­py day when we can bring our dear lit­t­le daugh­ter home!

Text: Sau­li Ter­va­nie­mi

Trans­la­ti­on: Sirk­ka-Lii­sa Lei­no­nen

You will find the ori­gi­nal blog post here.